- Geriatric Psychiatry
Professor - Med Center Line, Psychiatry and Behavioral Sciences
Associate Division Chief, Division of General Adult Psychiatry and Psychology, Department of Psychiatry and Behavioral Sciences, Stanford University (2019 - Present)
Section Chief, Geriatric Psychiatry, Department of Psychiatry and Behavioral Sciences, Stanford University (2017 - Present)
Director, Geriatric Psychiatry Fellowship Training Program, Department of Psychiatry & Behavioral Sciences, Stanford University (2015 - 2019)
Boards, Advisory Committees, Professional Organizations
Member, American Association for Geriatric Psychiatry (1998 - Present)
Board Certification: Geriatric Psychiatry, American Board of Psychiatry and Neurology (2006)
Board Certification: Psychiatry, American Board of Psychiatry and Neurology (2005)
Fellowship:University of California, San Diego (2002) CAUnited States of America
Residency:University of California, San Diego (2001) CAUnited States of America
Medical Education:University of California, San Francisco (1997) CA
Graduate and Fellowship Programs
Geriatric Psychiatry (Fellowship Program)
DISTINCT STRESS PROFILES AMONG ONCOLOGY PATIENTS UNDERGOING CHEMOTHERAPY.
Journal of pain and symptom management
CONTEXT: Cancer and its treatment are inherently stressful and stress impacts important patient outcomes. Patients vary considerably in their response to stress. Understanding this variability requires a patient-centered multidimensional approach.OBJECTIVES: The objectives of this study were to identify and characterize patient subgroups with distinct multidimensional stress profiles (stress appraisal, exposure, and adaptation) during cancer treatment.METHODS: Among 957 patients undergoing chemotherapy for breast, gastrointestinal, gynecological, or lung cancer, latent profile analysis was performed to identify patient subgroups using concurrent evaluations of global (Perceived Stress Scale) and cancer-specific (Impact of Events Scale-Revised) stress, lifetime stress exposure (Life Stressor Checklist-Revised), and resilience (Connor-Davidson Resilience Scale-10).RESULTS: Three latent classes were identified: "Normative" (54.3%; intermediate global stress and resilience, lower cancer-related stress, lowest life stress); "Stressed" (39.9%; highest global and cancer-specific stress scores, lowest resilience, most life stress); and "Resilient" (5.7%; lowest global stress, cancer-specific stress comparable to Normative class, highest resilience, intermediate life stress). Characteristics that distinguished the Stressed from the Normative class included: younger age, female gender, lower socioeconomic status, unmarried/partnered, living alone, poorer functional status, and higher comorbidity burden. Compared to Stressed patients, Resilient patients were more likely to be partnered, not live alone, and had a higher functional status. No demographic or clinical characteristics differentiated Normative from Resilient patients. Exposure to specific life stressors differed significantly among the classes.CONCLUSION: A subset of patients warrants intensive psychosocial intervention to reduce stress and improve adaptation to cancer. Intervention efforts may be informed by further study of Resilient patients.
View details for DOI 10.1016/j.jpainsymman.2019.10.025
View details for PubMedID 31711968
Psychotherapy for patients with mental health concerns in primary care
CANADIAN FAMILY PHYSICIAN
2019; 65 (10): 689–90
View details for Web of Science ID 000489735400010
- Patient-Reported Outcomes and Quality of Life after Treatment for Choroidal Melanoma OCULAR ONCOLOGY AND PATHOLOGY 2019; 5 (6): 402–11
- Morning Fatigue Severity Profiles in Oncology Outpatients Receiving Chemotherapy CANCER NURSING 2019; 42 (5): 355–64
Psychotherapy for patients with mental health concerns in primary care.
Canadian family physician Medecin de famille canadien
2019; 65 (10): 689–90
View details for PubMedID 31604734
Safeguarding Participants in Psychiatric Genetic Research: Perspectives of Key Stakeholder Groups.
Ethics & human research
2019; 41 (6): 12–22
Public trust in research depends on implementation of research protections. Genetic and psychiatric research may elicit "exceptionalism," the belief that these types of research deserve special protections. Genetic information has been viewed as different from other health information. Psychiatric research has been scrutinized based on concerns about the impact of psychiatric illness on individuals' abilities to make decisions. This study compared four stakeholder groups' attitudes toward research safeguards. Psychiatric genetic researchers and institutional review board chairs received structured surveys. Individuals with mental illness and family members participated in semistructured interviews. Paired sample t-tests were used to compare mean ratings of importance of safeguard procedures for genetic versus nongenetic research on physical versus mental illnesses. All groups provided higher ratings for the importance of safeguards for genetic research and for mental illness. Individuals with mental illness and family members rated the importance of safeguards more highly than researchers and chairs did. Results of generalized linear models showed significant effects of gender and ethnicity.
View details for DOI 10.1002/eahr.500034
View details for PubMedID 31743628
Psychological Symptoms and Stress Are Associated With Decrements in Attentional Function in Cancer Patients Undergoing Chemotherapy.
Decrements in attentional function-perceived effectiveness in everyday functioning related to cognitive dysfunction-are frequently reported by cancer patients during treatment. However, patients vary widely in their experiences of changes in attentional function.The aim of this study was to understand differences in attentional function among cancer patients during chemotherapy.Patients (n = 1329) undergoing chemotherapy were assessed at 6 time points during 2 rounds of chemotherapy. Latent profile analysis was used to identify subgroups of patients based on patterns in changes on the Attentional Function Index. Differences among the subgroups in demographic and clinical characteristics, psychological symptoms, and stress were evaluated.Three latent classes (ie, high, moderate, and low attentional function) were identified. Patients in the low and moderate classes were younger, more likely to be female, and less likely to be employed compared with those in the high class. Patients in the low class had higher levels of depressive and anxiety symptoms, cancer-related distress, and perceived stress compared with those in the moderate class, who, in turn, reported higher levels of these symptoms compared with those in the high class.Different experiences of changes in self-perceived attentional function are associated with psychological symptoms in cancer patients.Relationships between changes in attentional function and psychological symptoms and stress suggest that clinicians should attend to the potential that patients' cognitive and psychological experiences may be closely linked and may need to be addressed as related phenomena. Clinical trials are needed that evaluate treatments for both attentional and psychological symptoms.
View details for PubMedID 30998605
Do human subject safeguards matter to potential participants in psychiatric genetic research?
Journal of psychiatric research
2019; 116: 95–103
Despite longstanding concerns about the adequacy of human research protections in mental illness investigations, minimal work has focused on the perspectives of key stakeholders regarding these safeguards. This investigation examined the perspectives of potential research participants regarding safeguards for psychiatric genetic research. Individuals with mental illness (n = 71), first-degree family members of individuals with mental illness (n = 54), and individuals with no personal or close family history of mental illness (n = 57) provided responses to items regarding perceptions of: 1) protectiveness of a range of research safeguards in genetic research on mental illness; 2) influence of these safeguards on research participation decision-making; and 3) importance of these safeguards depending on the nature of the research (i.e., genetic vs. non-genetic mental illness research; and genetic research on mental illness vs. physical illness). Potential research participants perceived existing safeguard procedures as generally protective. The three groups did not differ in their ratings of protectiveness, with the exception of the safeguard domain of "Informed Consent or Alternative Decision-Making Procedures," which was viewed as more protective by family members of people with mental illness than by individuals with mental illness or comparison participants. Safeguard procedures were perceived as strongly influential with respect to willingness to enroll in psychiatric genetic research. These findings suggest that the presence of safeguards positively influences enrollment decision-making by research volunteers and indicate that potential psychiatric genetic research participants find safeguards to be protective, underscoring the responsibility to implement safeguard practices conscientiously.
View details for DOI 10.1016/j.jpsychires.2019.06.004
View details for PubMedID 31226581
Identification of subgroups of chemotherapy patients with distinct sleep disturbance profiles and associated co-occurring symptoms.
Purposes of this study were to identify subgroups of patients with distinct sleep disturbance profiles and to evaluate for differences in demographic, clinical, and various sleep characteristics, as well for differences in the severity of co-occurring symptoms among these subgroups.Outpatients with breast, gynecological, gastrointestinal, or lung cancer (n = 1331) completed questionnaires six times over two chemotherapy cycles. Self-reported sleep disturbance was evaluated using the General Sleep Disturbance Scale (GSDS). Latent profile analysis was used to identify distinct subgroups.Three latent classes with distinct sleep disturbance profiles were identified (Low [25.5%], High [50.8%], Very High [24.0%]) across the six assessments. Approximately 75% of the patients had a mean total GSDS score that was above the clinically meaningful cutoff score of at least 43 across all six assessments. Compared to the Low class, patients in High and Very High classes were significantly younger, had a lower functional status, had higher levels of comorbidity, and were more likely to be female, more likely to have childcare responsibilities, less likely to be employed, and less likely to have gastrointestinal cancer. For all of the GSDS subscale and total scores, significant differences among the latent classes followed the expected pattern (Low < High < Very High). For trait and state anxiety, depressive symptoms, morning and evening fatigue, decrements in attentional function, and decrements in morning and evening energy, significant differences among the latent classes followed the expected pattern (Low < High < Very High).Clinicians need to perform in-depth assessments of sleep disturbance and co-occurring symptoms to identify high-risk patients and recommend appropriate interventions.
View details for DOI 10.1093/sleep/zsz151
View details for PubMedID 31361899
Co-occurring Gastrointestinal Symptoms Are Associated with Taste Changes in Oncology Patients Receiving Chemotherapy.
Journal of pain and symptom management
Over 80% of cancer patients report taste changes. Despite the high prevalence of this symptom and its negative effects on health, few studies have assessed its association with other gastrointestinal (GI) symptoms.Determine the occurrence, frequency, severity and distress of patient-reported "change in the way food tastes" (CFT) and identify phenotypic and GI symptoms characteristics associated with its occurrence.Patients receiving chemotherapy for breast, GI, gynecological, or lung cancer completed demographic and symptom questionnaires prior to their 2nd or 3rd cycle of chemotherapy. CFT was assessed using the Memorial Symptom Assessment Scale. Differences in demographic, clinical, and GI symptom characteristics were evaluated using parametric and nonparametric tests.Of the 1,329 patients, 49.4% reported experiencing CFT in the week prior to their 2nd or 3rd cycle of chemotherapy. In the univariate analysis, patients who reported CFT had fewer years of education; were more likely to be Black or Hispanic, Mixed race, or other, and had a lower annual household income. A higher percentage of patients with CFT reported the occurrence of thirteen GI symptoms (e.g., constipation, diarrhea, abdominal cramps, feeling bloated). In a multivariable logistic regression analysis, Compared to patients with breast cancer, patients with lung (OR=0.55; p=0.004) had a decrease in the odds of being in the CFT group. Patients who received a neurokinin-1 receptor antagonist and two other antiemetics were at an increased odds of being in the CFT group (OR=2.51; p=0.001). Eight of the thirteen GI symptoms evaluated were associated with an increased odds of being in the CFT group.This study provides new evidence on the frequency, severity, and distress of CFT in oncology patients undergoing chemotherapy. These findings suggest that CFT is a important problem that warrants ongoing assessments and nutritional interventions.
View details for DOI 10.1016/j.jpainsymman.2019.07.016
View details for PubMedID 31349034
Patient-Reported Outcomes and Quality of Life after Treatment for Choroidal Melanoma.
Ocular oncology and pathology
2019; 5 (6): 402–11
Patients with choroidal melanoma can develop psychological morbidity because of visual disability, pain, facial deformity, and fears of metastatic disease. The aim of this study was to report on the prevalence of symptoms, moods, and well-being after radiotherapy or enucleation for choroidal melanoma and how these outcomes changed over time.Participants were mailed questionnaires approximately 6 months following treatment, then annually on every anniversary of their treatment.Soon after enucleation, patients experienced visual difficulties because of loss of stereopsis and visual field and were concerned about their appearance and about metastatic disease. After radiotherapy, patients were more concerned about local tumor recurrence and more troubled by diplopia and headache. Over time, visual difficulties diminished after enucleation but increased in patients who had received radiotherapy, with concerns about metastasis, loss of health, and tumor recurrence diminishing in both groups. Anxiety tended to diminish whereas depression increased, especially after enucleation. Emotional well-being improved after both kinds of treatment, whereas functional and physical well-being diminished after enucleation but improved after radiotherapy. Self-reported quality of life diminished equally with both kinds of treatment.The findings of this study should help physicians understand what patients tend to feel after treatment for choroidal melanoma.
View details for DOI 10.1159/000496927
View details for PubMedID 31768363
View details for PubMedCentralID PMC6873060
Canadian family physician Medecin de famille canadien
2019; 65 (10): e420–e421
View details for PubMedID 31604750
Resilience: A Rich Concept in Need of Research Comment on: "Neurocognitive Correlates of Resilience in Late-Life Depression" (by Laird et al.).
The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry
View details for PubMedID 30391095
Response to Open Peer Commentaries on "The Ethics of Smart Pills and Self-Acting Devices: Autonomy, Truth-Telling, and Trust at the Dawn of Digital Medicine".
The American journal of bioethics : AJOB
2018; 18 (10): W4–W7
View details for PubMedID 30339081
Perspectives of psychiatric investigators and IRB chairs regarding benefits of psychiatric genetics research.
Journal of psychiatric research
2018; 106: 54–60
There is hope that psychiatric genetics inquiry will provide important insights into the origins and treatment of mental illness given the burden of these conditions. We sought to examine perspectives of psychiatric genetic investigators regarding the potential benefits of genetic research in general and the potential benefits of genetic research for the diagnosis and treatment of mental illnesses specifically. We compared investigator attitudes with those of chairs of Institutional Review Boards (IRBs) entrusted with evaluating the benefits and risks of human research studies. Two groups directly engaged with the conduct and oversight of psychiatric genetic research were examined (psychiatric investigators, n = 203; IRB Chairs, n = 183). Participants rated 15 survey items regarding current and future benefits of general genetic research, possible benefits of psychiatric genetic research, and the importance to society of genetic vs. non-genetic research examining causes and treatments of illnesses. Investigators and IRB Chairs strongly endorsed the future benefits of general genetic research for society and for the health of individuals; compared to IRB Chairs, investigators were more positive about these benefits. Even after adjusting for demographic variables, psychiatric genetic investigators were significantly more optimistic about genetic research compared with IRB Chairs. Both groups were moderately optimistic about the possible benefits of genetic research related to mental illness. Greater optimism was seen regarding new or personalized medications for mental illnesses, as well as genetic predictive testing of mental illnesses. Greater precision and circumspection about the potential benefits of psychiatric genetic research are needed.
View details for PubMedID 30273801
Is It Ethical to Use Prognostic Estimates from Machine Learning to Treat Psychosis?
AMA journal of ethics
2018; 20 (9): E804–811
Machine learning is a method for predicting clinically relevant variables, such as opportunities for early intervention, potential treatment response, prognosis, and health outcomes. This commentary examines the following ethical questions about machine learning in a case of a patient with new onset psychosis: (1) When is clinical innovation ethically acceptable? (2) How should clinicians communicate with patients about the ethical issues raised by a machine learning predictive model?
View details for PubMedID 30242810
Morning Fatigue Severity Profiles in Oncology Outpatients Receiving Chemotherapy.
BACKGROUND: Morning fatigue is a distinct symptom experienced during chemotherapy that demonstrates significant interindividual variability.OBJECTIVES: The aims of this study were to identify subgroups with distinct morning fatigue profiles and evaluate how these subgroups differed by demographic, clinical, and symptom characteristics.METHODS: Outpatients (N = 1332) with breast, gastrointestinal, gynecological, or lung cancer completed questionnaires 6 times over 2 cycles of chemotherapy. Morning fatigue was assessed with the Lee Fatigue Scale. Latent profile analysis was used to identify distinct morning fatigue profiles.RESULTS: Four morning fatigue profiles (ie, very low, low, high, and very high) were identified. In the high and very high classes, all 6 morning fatigue scores were higher than the clinical cutoff score. Compared with those in the very low and low classes, patients in the very high class were younger and not married/partnered; lived alone; had higher incomes, higher comorbidity, and higher body mass index; and did not exercise regularly. Across the 4 classes, functional status and attentional function scores decreased and anxiety, depression, sleep disturbance, morning fatigue, and evening fatigue scores increased across the 2 cycles.CONCLUSION: Results provide insights into modifiable risk factors for morning fatigue. These risk factors can be used to develop more targeted interventions.IMPLICATIONS FOR PRACTICE: Patients in the high and very high morning fatigue classes experienced high symptom and comorbidity burdens and significant decrements in functional status. Using this information, clinicians can identify patients who are at an increased risk for higher levels of morning fatigue and prescribe interventions to improve this devastating symptom.
View details for PubMedID 30024437
Patient-reported Outcomes and Quality of Life After Treatment of Choroidal Melanoma: A Comparison of Enucleation Versus Radiotherapy in 1596 Patients.
American journal of ophthalmology
PURPOSE: To test the hypothesis that patients treated with radiotherapy for choroidal melanoma enjoy better quality of life (QoL) than patients who have undergone enucleation.METHODS: In this nonrandomized study, patients with choroidal melanoma treated at the Royal Liverpool University Hospital, Liverpool, UK, were invited to complete QoL questionnaires approximately 6months postoperatively and then on each anniversary of their primary treatment. These instruments consisted of the European Organization for Research and Treatment of Cancer (EORTC) QLQ-OPT30 questionnaire, Hospital Anxiety & Depression Scale, and the Functional Assessment of Cancer Treatment questionnaire. Patient-reported outcomes were correlated with demographics, ocular treatment, social factors, presenting tumor and ocular status, self-reported general health, marital status, and employment status.RESULTS: The 1596 patients were treated with radiotherapy (72.3%) or enucleation (27.7%). Enucleation was associated with male sex (chi2, P= .004), older age (t test, P < .001), larger tumor diameter (t test, P<.001), monosomy 3 (chi2, P < .001), depression (linear regression, 95% confidence interval [CI], .17 to 1.01), and reduced physical and functional well-being (linear regression, 95% CI,-1.14 to-0.12 and-1.96 to-0.47), respectively. Poor QoL was attributed to the ocular disease by 21% and 20% of enucleated and irradiated patients, respectively (chi2, P= .938).CONCLUSIONS: Patient-reported outcomes and QoL were worse in patients who had undergone primary enucleation for choroidal melanoma. These outcomes may partly have been caused by factors predisposing toenucleation rather than enucleation itself, because enucleated patients tended to be older, with more advanced disease at presentation, and a worse prognosisfor survival.
View details for PubMedID 29555484
Depression increases subjective stigma of chronic pain
JOURNAL OF AFFECTIVE DISORDERS
2018; 229: 456–62
Individuals suffering from mental as well as physical conditions often face stigma, which can adversely affect functioning, treatment seeking, and emotional health. We compared levels of stigma experienced by individuals with depression and/or chronic pain, to contrast the perception of stigma experienced by the sufferers with that of individuals who have never experienced these conditions, and to determine whether depression is related to greater experience of stigma for chronic pain.Four groups of participants (N=236) took part in the study: depression only, chronic pain only, comorbid depression and chronic pain, and healthy controls. Participants underwent a clinical interview and completed a stigma measure that assessed general self-stigma, public stigma, treatment stigma, secrecy, and stigmatizing experiences.Healthy controls largely underestimated the stigma experienced by individuals with depression, but were not inaccurate in estimating stigma experienced by individuals with chronic pain. Further, individuals with chronic pain alone generally perceived less stigma for their condition than did those with depression alone. However, comorbid individuals perceived worse stigma of chronic pain compared to individuals with chronic pain alone, suggesting that depression may affect the stigma felt by sufferers of conditions other than depression.Social desirability may have influenced stigma scores. Comparing several groups required adapting a standardized instrument.Results suggest that depression may play a role in the social experience of having a health condition, as well as indicate that the general public continues to fail to appreciate the negative social pressures experienced by individuals with mental health conditions.
View details for PubMedID 29331708
View details for PubMedCentralID PMC5807144
Behavioral Activation Therapy for Older Adults with Depression: A Systematic Review of Effectiveness
ELSEVIER SCIENCE INC. 2018: S132
View details for Web of Science ID 000432438300146
Changes in the Occurrence, Severity, and Distress of Symptoms in Patients With Gastrointestinal Cancers Receiving Chemotherapy
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
2018; 55 (3): 808–34
Studies on multiple dimensions of the symptom experience of patients with gastrointestinal cancers are extremely limited.Purpose was to evaluate for changes over time in the occurrence, severity, and distress of seven common symptoms in these patients.Patients completed Memorial Symptom Assessment Scale, six times over two cycles of chemotherapy (CTX). Changes over time in occurrence, severity, and distress of pain, lack of energy, nausea, feeling drowsy, difficulty sleeping, and change in the way food tastes were evaluated using multilevel regression analyses. In the conditional models, effects of treatment group (i.e., with or without targeted therapy), age, number of metastatic sites, time from cancer diagnosis, number of prior cancer treatments, cancer diagnosis, and CTX regimen on enrollment levels, as well as the trajectories of symptom occurrence, severity, and distress were evaluated.Although the occurrence rates for pain, lack of energy, feeling drowsy, difficulty sleeping, and change in the way food tastes declined over the two cycles of CTX, nausea and numbness/tingling in hands/feet had more complex patterns of occurrence. Severity and distress ratings for the seven symptoms varied across the two cycles of CTX.Demographic and clinical characteristics associated with differences in enrollment levels as well as changes over time in occurrence, severity, and distress of these seven common symptoms were highly variable. These findings can be used to identify patients who are at higher risk for more severe and distressing symptoms during CTX and to enable the initiation of preemptive symptom management interventions.
View details for PubMedID 29051114
View details for PubMedCentralID PMC5834370
Understanding Culture and Diversity in Spiritual Care
ELSEVIER SCIENCE INC. 2018: S81–S82
View details for Web of Science ID 000432438300085
Personality Profiles are Associated with Psychological and Physical Symptoms in Older Oncology Patients Undergoing Chemotherapy
ELSEVIER SCIENCE INC. 2018: S82
View details for Web of Science ID 000432438300086
Examination of Spiritual Needs in Hurricane Sandy Disaster Recovery Through Clinical Pastoral Education Verbatims
JOURNAL OF PASTORAL CARE & COUNSELING
2018; 72 (1): 8–21
Objectives Spiritual support is an essential component to disaster response and recovery. The goals of this study were to (a) provide a qualitative examination of spiritual needs of recipients of disaster relief after Hurricane Sandy, as observed by spiritual care interns in "verbatims"; (b) demonstrate the feasibility of conducting research with providers of disaster spiritual care. Methods The study was accomplished through analysis (including codebook development and transcript coding) of written pastoral reports-aka "verbatims" ( n = 18)-as well as audio-recorded, transcribed seminars ( n = 23). Clinical Pastoral Education verbatims offer qualitative data in the form of confidential, anonymous reports of what the students do in the field. Results Analysis of coded transcripts yielded several themes and subthemes as results. Significance of Results Major themes include: (a) the feasibility of research for CPE students as subject; (b) the discussion of magnitude of the storm and aftermath, as a spiritual need in disaster;
View details for PubMedID 29623794
Differences in symptom clusters before and twelve months after breast cancer surgery
EUROPEAN JOURNAL OF ONCOLOGY NURSING
2018; 32: 63–72
Given the inter-relatedness among symptoms, research efforts are focused on an evaluation of symptom clusters. The purposes of this study were to evaluate for differences in the number and types of menopausal-related symptom clusters assessed prior to and at 12-months after surgery using ratings of occurrence and severity and to evaluate for changes in these symptom clusters over time.Prior to and at 12 months after surgery, 392 women with breast cancer completed the Menopausal Symptoms Scale. Exploratory factor analyses were used to identify the symptom clusters.Of the 392 women evaluated, the mean number of symptoms (out of 46) was 13.2 (±8.5) at enrollment and 10.9 (±8.2) at 12 months after surgery. Using occurrence and severity, three symptom clusters were identified prior to surgery. Five symptom clusters were identified at 12 months following surgery. Two symptom clusters (i.e., pain/discomfort and hormonal) were relatively stable across both dimensions and time points. Two symptom clusters were relatively stable across both dimensions either prior to surgery (i.e., sleep/psychological/cognitive) or at 12 months after surgery (i.e., sleep). The other four clusters (i.e., irritability, psychological/cognitive, cognitive, psychological) were identified at one time point using a single dimension.While some menopausal-related symptom clusters were consistent across time and dimensions, the majority of symptoms clustered together differently depending on whether they were evaluated prior to or at 12 months after breast cancer surgery. An increased understanding of how symptom clusters change over time may assist clinicians to focus their symptom assessments and management strategies.
View details for PubMedID 29353634
View details for PubMedCentralID PMC5783198
A review of the literature on symptom clusters in studies that included oncology patients receiving primary or adjuvant chemotherapy
JOURNAL OF CLINICAL NURSING
2018; 27 (3-4): 516–45
To summarise the current state of knowledge of symptom clusters research from studies that included, as part of their sample, patients who were receiving primary or adjuvant chemotherapy.Since the concept of a symptom cluster was first introduced into the oncology literature in 2001, only four comprehensive reviews of symptom clusters research in oncology patients were identified that provide insights into this important concept in symptom management research.A comprehensive review of the literature.A comprehensive literature search was conducted for the years 2000 to 2016. Only 19 studies met the inclusion criteria for this literature review. These studies were evaluated in terms of the symptom assessment instruments used; the statistical analysis methods used; the symptom dimension(s) used to create the symptom cluster(s); the number and types of symptom clusters identified; and whether the specific symptom clusters changed over time.The number of symptom clusters identified ranged from one-seven. The majority of the studies used some type of factor analysis to create the symptom clusters. The most common symptom dimension used to create the clusters was symptom severity. A "gastrointestinal symptom cluster" was the most common symptom cluster identified. Across the eight longitudinal studies, for half of these studies the symptom clusters remained relatively stable over time.Additional research is needed in oncology patients to address the assessment of symptom clusters, the specific nature of symptom clusters and whether symptom clusters change over time.
View details for PubMedID 28859255
View details for PubMedCentralID PMC5823712
- Multimedia Aided Consent for Alzheimer's Disease Research CLINICAL GERONTOLOGIST 2018; 41 (1): 20–32
The Ethics of Smart Pills and Self-Acting Devices: Autonomy, Truth-Telling, and Trust at the Dawn of Digital Medicine.
The American journal of bioethics : AJOB
2018; 18 (9): 38–47
Digital medicine is a medical treatment that combines technology with drug delivery. The promises of this combination are continuous and remote monitoring, better disease management, self-tracking, self-management of diseases, and improved treatment adherence. These devices pose ethical challenges for patients, providers, and the social practice of medicine. For patients, having both informed consent and a user agreement raises questions of understanding for autonomy and informed consent, therapeutic misconception, external influences on decision making, confidentiality and privacy, and device dependability. For providers, digital medicine changes the relationship where trust can be verified, clinicians can be monitored, expectations must be managed, and new liability risks may be assumed. Other ethical questions include direct third-party monitoring of health treatment, affordability, and planning for adverse events in the case of device malfunction. This article seeks to lay out the ethical landscape for the implementation of such devices in patient care.
View details for PubMedID 30235091
Stability of Symptom Clusters in Patients With Breast Cancer Receiving Chemotherapy
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
2018; 55 (1): 39–55
Patients with breast cancer who undergo chemotherapy (CTX) experience between 10 and 32 concurrent symptoms. An evaluation of how these symptoms cluster together and how these symptom clusters change over time may provide insights into how to treat these multiple co-occurring symptoms.The purposes of this study were to determine the occurrence rates and severity ratings for 38 common symptoms, evaluate for differences in the number and types of symptom clusters, and evaluate for changes over time in these symptom clusters (i.e., before CTX, the week after CTX, and two weeks after CTX).At each of the assessments, a modified version of the Memorial Symptom Assessment Scale was used to assess the occurrence and severity of the 38 symptoms. Exploratory factor analyses were used to extract the symptom clusters.Although across the two symptom dimensions (i.e., occurrence and severity) and the three assessments, eight distinct symptom clusters were identified, only five were relatively stable across both dimensions and across time (i.e., psychological, hormonal, nutritional, gastrointestinal, and epithelial). Two of the additional clusters varied by time but not by symptom dimension (i.e., sickness behavior and weight change). The CTX neuropathy cluster was identified only at the assessment performed in the week after CTX.These findings provide insights into the most common symptom clusters in patients undergoing CTX for breast cancer. In addition, the most common symptoms within each cluster appear to be relatively stable across the two dimensions, as well as across time.
View details for PubMedID 28838866
View details for PubMedCentralID PMC5734998
Evaluation of Coping as a Mediator of the Relationship Between Stressful Life Events and Cancer-Related Distress
2017; 36 (12): 1147–60
Lifetime stressful life events (SLEs) may predispose oncology patients to cancer-related distress (i.e., intrusive thoughts, hyperarousal, avoidance). Coping may influence cancer-related distress by mediating this relationship. This study sought to (a) determine the prevalence and impact of lifetime SLEs among oncology outpatients receiving chemotherapy and (b) examine the relationship between SLEs and cancer-related distress and the mediating role of coping on this relationship.Patients (n = 957), with breast, gastrointestinal, gynecologic or lung cancer, who were undergoing chemotherapy, completed the Life Stressor Checklist-Revised (LSC-R), a measure of lifetime SLEs. Cancer-related distress was assessed with the Impact of Event Scale-Revised. Coping strategies since beginning chemotherapy were assessed with the Brief COPE; 2 latent variables (engagement and disengagement coping) were identified based on these scores. LSC-R scores (number of SLEs and perceived impact during the prior year) were evaluated in relation to demographic and clinical characteristics. Structural equation modeling was used to evaluate the relationship between LSC-R and Impact of Event Scale-Revised scores and the mediating role of engagement and disengagement coping on this relationship.On average, patients reported 6.1 (SD = 4.0; range = 0-23 out of 30) SLEs. Patients who were not married/partnered, had incomes <$30,000/year, or who had lower functional status or greater comorbidity had higher LSC-R scores. The relationship between more SLEs and more severe cancer-related distress was completely mediated by disengagement coping. Engagement coping did not mediate this relationship.Disengagement coping, including behavioral disengagement, avoidance, and denial, should be targeted to mitigate cancer-related distress. (PsycINFO Database Record
View details for PubMedID 28825498
View details for PubMedCentralID PMC5712475
Association of personality profiles with depressive, anxiety, and cancer-related symptoms in patients undergoing chemotherapy
PERSONALITY AND INDIVIDUAL DIFFERENCES
2017; 117: 130–38
This study identified latent classes of cancer patients based on Big Five personality dimensions and evaluated for differences in demographic and clinical characteristics, depression, anxiety, and cancer-related symptoms.Patients (n=1248) with breast, gastrointestinal, gynecological, or lung cancer completed the Center for Epidemiological Studies-Depression scale, Spielberger State-Trait Anxiety Inventories, NEO-Five Factor Inventory (NEO-FFI), and Memorial Symptom Assessment Scale (MSAS). Latent class profile analysis of NEO-FFI scores was used to identify patient subgroups.Three latent classes were identified. The "Distressed" class (14.3%) scored highest on neuroticism and lowest on extraversion, agreeableness, and conscientiousness. The "Resilient" class (31.9%) scored lowest on neuroticism and highest on extraversion, agreeableness, and conscientiousness. The "Normative" class (53.8%) was intermediate on all dimensions except openness. Compared to the Resilient class, patients in the Distressed class were younger, less educated, more likely to care for another adult, had more comorbidities, and exercised less. The three classes differed by performance status, marital and employment status, and income, but not by gender, time since diagnosis, or type of prior cancer treatment. The classes differed (Distressed > Normative > Resilient) in depression, anxiety, and cancer symptoms.Personality is associated with psychological and physical symptoms in cancer patients.
View details for PubMedID 29479128
Influence of Menopausal Status on the Symptom Experience of Women Before Breast Cancer Surgery.
BACKGROUND: Breast cancer treatments can change women's hormonal milieu and alter their symptom experience. Little is known about associations between menopausal status and menopausal symptoms in women with breast cancer before surgery.OBJECTIVE: The purpose of this study was to evaluate for differences in occurrence, severity, and distress of symptoms between premenopausal and postmenopausal women before breast cancer surgery.METHODS: A total of 312 women with breast cancer completed the Menopausal Symptoms Scale, a self-report measure that evaluated the occurrence, severity, and distress of 46 common symptoms associated with menopause. Regression analyses were used to evaluate for between-group differences in these symptoms.RESULTS: Of the 312 patients enrolled, 37.4% (n = 116) were premenopausal, and 62.6% (n = 196) were postmenopausal. In the multivariate analysis that adjusted for 7 covariates, premenopausal patients reported higher occurrence rates for urinary frequency (P = .006) and reported lower occurrence rates for joint pain/stiffness (P = .011), difficulty falling asleep (P = .025), and vaginal dryness (P = .002). A significant interaction was found between age and menopausal status for hot flashes (P = .002), wake during the night (P = .025), and headache (P = .040).CONCLUSION: Regardless of menopausal status, women reported high occurrence rates for several menopausal symptoms. Associations between some symptom occurrence rates and menopausal status depended on the patients' age.IMPLICATIONS FOR PRACTICE: As part of a preoperative symptom assessment, clinicians need to consider a woman's menopausal status and salient demographic and clinical characteristics. The identification of women with a higher symptom burden will assist with more effective management.
View details for PubMedID 28945634
Predictors of the multidimensional symptom experience of lung cancer patients receiving chemotherapy.
Supportive care in cancer
Few studies have examined interindividual variability in the symptom experience of lung cancer patients. We aimed to identify the most prevalent, severe, and distressing symptoms, and risk factors associated with increased symptom burden.Lung cancer patients (n = 145) reported occurrence, severity, and distress for 38 symptoms on the Memorial Symptom Assessment Scale 1 week after chemotherapy. Using multidimensional subscales, risk factors for higher global distress, physical, and psychological symptoms were evaluated using simultaneous linear regression.Mean age was 64.0 years and 56.6% were female. Mean Karnofsky Performance Status score was 79.1 (SD 14.6) and mean Self-Administered Comorbidity Questionnaire score was 7.3 (SD 3.9). The most distressing and prevalent symptom was fatigue. Problems with sexual interest/activity had the highest mean severity rating. Patients with lower functional status (p = 0.001) and higher comorbidity (p = 0.02) reported higher global distress. Similarly, lower functional status (p = 0.003) and higher comorbidity (p = 0.04) were associated with a higher physical symptom burden along with lower body mass index (p = 0.02). Higher psychology symptom burden was associated with lower functional status (p = 0.01), younger age (p = 0.02), non-metastatic disease (p = 0.03), higher number of prior treatments (p = 0.04), and income (p = 0.03).Fatigue was the most distressing and prevalent symptom among lung cancer patients receiving chemotherapy. Lower functional status was associated with a higher burden of global distress, physical, and psychological symptoms. Younger age and non-metastatic disease were additional risk factors for increased psychological symptoms. Together, these risk factors can help clinicians identify lung cancer patients at increased need for aggressive symptom management.
View details for DOI 10.1007/s00520-017-3593-z
View details for PubMedID 28160076
Subspecialty Training and Certification in Geriatric Psychiatry: A 25-Year Overview.
The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry
The Institute of Medicine estimated that by 2030, from 10.1 to 14.4 million Americans aged 65 years or older will have mental health or substance use disorders. This article reviews the history and current status of training, certification, and practice in geriatric psychiatry against the backdrop of this "silver tsunami." The American Board of Psychiatry and Neurology (ABPN) administered the first subspecialty examination in geriatric psychiatry in 1991, and through 2015 3,329 certificates were awarded. The Accreditation Council for Graduate Medical Education approved the training requirements in 1993. After a surge in programs and fellows, the numbers appear to have stabilized at about 57 programs and 60-65 trainees per year with fewer than half of the positions filled each year. The majority of graduates seeks and obtains ABPN certification, and the majority of those who were fellowship trained have maintained certification. Despite the unprecedented demand for mental health services for older adults, it must be acknowledged that not enough geriatric psychiatrists can be prepared to meet the needs of an aging U.S.Strategies for addressing the shortage are discussed, including undertaking subspecialty training in the fourth year of psychiatry training, increasing the time devoted to the care of older adults in undergraduate and graduate medical education, and developing alternative training pathways such as mini-fellowships. It is not clear whether more favorable Medicare reimbursement rates for those certified in geriatric psychiatry would increase the numbers seeking fellowship training.
View details for DOI 10.1016/j.jagp.2016.12.018
View details for PubMedID 28214074
Determinants of Capacity to Consent to Research on Alzheimer's Disease
2017; 40 (1): 24-34
Investigators conducting Alzheimer's disease (AD) research need to consider participants' capacity to consent. Cognitive functioning is a significant predictor of decisional capacity, but there is a dearth of information on the influence of neuropsychiatric symptoms in AD on decisional capacity. We examined the rates of decisional capacity associated with two types of research protocols, and the association of capacity with neuropsychiatric symptoms and other participant characteristics.We comprehensively evaluated decisional capacity among 64 patients with mild-to-moderate AD and 70 healthy comparison (HC) subjects randomized to consider either a medium risk or higher risk hypothetical research protocol. Additional measures included sociodemographics, cognitive deficits, and neuropsychiatric symptoms.Twenty AD patients (31.3%) and 67 HCs (95.7%) were deemed capable; 44 AD patients (68.8%) and 3 HCs (4.3%) incapable of consent. Age, education, and severity of cognitive deficits were associated with incapable status; there were no significant associations with severity of neuropsychiatric symptoms or protocol risk level.Findings highlight the importance of understanding of capacity and its assessment among people with AD, rather than treating AD diagnosis as synonymous with impaired capacity. As novel treatments move from bench to bedside, methods of assessing and addressing capacity impairment must similarly advance.In assessing research consent capacity, use structured assessments with population specific cut scores interpreted in the context of the person's background including education, culture, and language. Individuals should be encouraged to execute research proxy documents when able.
View details for DOI 10.1080/07317115.2016.1197352
View details for Web of Science ID 000387804400004
View details for PubMedID 28154452
View details for PubMedCentralID PMC5279898
The effect of depression on the decision to join a clinical trial.
Journal of consulting and clinical psychology
2017; 85 (7): 751–56
Clinical trials are necessary for evaluation of novel treatments. However, concerns have been raised about the vulnerability of depressed individuals when joining clinical trials, that is, about their abilities to make good decisions about clinical trial participation. The purpose of this study was to determine whether depression compromises decisions to join clinical trials, by comparing the decisions of 3 groups: depressed individuals, individuals suffering from chronic pain, and individuals with comorbid depression and chronic pain.Participants (depressed: n = 61; chronic pain: n = 60; comorbid: n = 58) completed, via a clinical interview, common decision-making tasks from the field of judgment and decision making (time trade-off and standard gamble). The rationality of decisions was defined as the concordance between the evaluations of their health and the amount of risk participants would accept to improve health.Depressed individuals made less rational decisions than individuals with chronic pain (partial η2 = 0.075, 90% confidence interval [CI] [0.009, 0.180]); however, the discrepancy was in the direction of risk aversion, suggesting that depressed individuals were overly cautious about clinical trial participation. Furthermore, this risk aversion was not limited to clinical trials for depression, but also extended to clinical trials for chronic pain (partial η2 = 0.041, 90% CI [0.002, 0.117]), suggesting that depressed individuals may be overly cautious in their health choices more broadly.Our findings suggest that concerns about depressed individuals making overly risky "desperate" decisions is likely unfounded, and it is more likely that depressed individuals may forgo valuable care options in an attempt to avoid risk. (PsycINFO Database Record
View details for PubMedID 28394169
View details for PubMedCentralID PMC5476487
What Impact Do Chaplains Have? A Pilot Study of Spiritual AIM for Advanced Cancer Patients in Outpatient Palliative Care.
Journal of pain and symptom management
2017; 54 (5): 707–14
Spiritual care is integral to quality palliative care. Although chaplains are uniquely trained to provide spiritual care, studies evaluating chaplains' work in palliative care are scarce.The goals of this pre-post study, conducted among patients with advanced cancer receiving outpatient palliative care, were to evaluate the feasibility and acceptability of chaplain-delivered spiritual care, utilizing the Spiritual Assessment and Intervention Model ("Spiritual AIM"), and to gather pilot data on Spiritual AIM's effects on spiritual well-being, religious and cancer-specific coping, and physical and psychological symptoms.Patients with advanced cancer (N = 31) who were receiving outpatient palliative care were assigned based on chaplains' and patients' outpatient schedules, to one of three professional chaplains for three individual Spiritual AIM sessions, conducted over the course of approximately six to eight weeks. Patients completed the following measures at baseline and post-intervention: Edmonton Symptom Assessment Scale, Steinhauser Spirituality, Brief RCOPE, Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp-12), Mini-Mental Adjustment to Cancer (Mini-MAC), Patient Dignity Inventory, Center for Epidemiological Studies-Depression (10 items), and Spielberger State Anxiety Inventory.From baseline to post-Spiritual AIM, significant increases were found on the FACIT-Sp-12 Faith subscale, the Mini-MAC Fighting Spirit subscale, and Mini-MAC Adaptive Coping factor. Two trends were observed, i.e., an increase in Positive religious coping on the Brief RCOPE and an increase in Fatalism (a subscale of the Mini-MAC).Spiritual AIM, a brief chaplain-led intervention, holds potential to address spiritual needs and religious and general coping in patients with serious illnesses.
View details for PubMedID 28736103
View details for PubMedCentralID PMC5650916
When Does Therapeutic Misconception Affect Surrogates' or Subjects' Decision Making about Whether to Participate in Dementia Research?
AMA journal of ethics
2017; 19 (7): 678–85
"Therapeutic misconception" (TM) refers to inappropriate assumptions and beliefs on the part of research participants regarding key distinctions between the purpose, methods, intended benefits, and potential disadvantages of research compared to those of clinical care. Despite an extensive literature describing TM across varied types of research and populations, minimal work has addressed TM in the context of dementia research. This is a serious gap, for several reasons: people with dementia are at significant risk of diminished capacity; surrogate decision makers are typically asked to provide consent on behalf of the person with dementia; and available treatments for dementia are quite limited. More research is needed on the prevalence, nature, and impact of TM in the context of clinical dementia research.
View details for PubMedID 28813240
Multimedia Aided Consent for Alzheimer's Disease Research.
2017; 41 (1): 20–32
Optimizing the research consent process simultaneously fosters respect for autonomy and protection of those with diminished capacity for autonomy. This study evaluated the effectiveness of an enhanced research consent procedure, employing multimedia disclosure and corrective feedback, in improving decisional capacity among 114 people with mild-to-moderate Alzheimer's disease (AD) and 134 non-psychiatric comparison (NC) subjects.Participants were randomized to consent type (routine versus enhanced) and protocol type (lower versus higher risk). Outcomes included a 5-item questionnaire assessing immediate comprehension, MacArthur Competence Assessment Tool for Clinical Research assessing four components of decision-making capacity, and categorical decisional capacity (based on a cut-score established in reference to expert judgments for a subset of participants).There was no significant effect of the enhanced consent procedure, relative to routine consent, on immediate comprehension or decisional capacity.Multimedia tools do not appear to be the solution to better consent for AD research.Given the ethical primacy of informed consent and issues of justice for impaired populations who might be harmed by an absence of research-based treatment advances, continued search for ways to more meaningfully engage people with AD in the consent or assent process is warranted.
View details for PubMedID 29182458
View details for PubMedCentralID PMC6085078
Inflammatory pathway genes associated with inter-individual variability in the trajectories of morning and evening fatigue in patients receiving chemotherapy.
2017; 91: 187–210
Fatigue, a highly prevalent and distressing symptom during chemotherapy (CTX), demonstrates diurnal and interindividual variability in severity. Little is known about the associations between variations in genes involved in inflammatory processes and morning and evening fatigue severity during CTX. The purposes of this study, in a sample of oncology patients (N=543) with breast, gastrointestinal (GI), gynecological (GYN), or lung cancer who received two cycles of CTX, were to determine whether variations in genes involved in inflammatory processes were associated with inter-individual variability in initial levels as well as in the trajectories of morning and evening fatigue. Patients completed the Lee Fatigue Scale to determine morning and evening fatigue severity a total of six times over two cycles of CTX. Using a whole exome array, 309 single nucleotide polymorphisms SNPs among the 64 candidate genes that passed all quality control filters were evaluated using hierarchical linear modeling (HLM). Based on the results of the HLM analyses, the final SNPs were evaluated for their potential impact on protein function using two bioinformational tools. The following inflammatory pathways were represented: chemokines (3 genes); cytokines (12 genes); inflammasome (11 genes); Janus kinase/signal transducers and activators of transcription (JAK/STAT, 10 genes); mitogen-activated protein kinase/jun amino-terminal kinases (MAPK/JNK, 3 genes); nuclear factor-kappa beta (NFkB, 18 genes); and NFkB and MAP/JNK (7 genes). After controlling for self-reported and genomic estimates of race and ethnicity, polymorphisms in six genes from the cytokine (2 genes); inflammasome (2 genes); and NFkB (2 genes) pathways were associated with both morning and evening fatigue. Polymorphisms in six genes from the inflammasome (1 gene); JAK/STAT (1 gene); and NFkB (4 genes) pathways were associated with only morning fatigue. Polymorphisms in three genes from the inflammasome (2 genes) and the NFkB (1 gene) pathways were associated with only evening fatigue. Taken together, these findings add to the growing body of evidence that suggests that morning and evening fatigue are distinct symptoms.
View details for PubMedID 28110208
View details for PubMedCentralID PMC5318191
Distinct Physical Function Profiles in Older Adults Receiving Cancer Chemotherapy.
Journal of pain and symptom management
2017; 54 (3): 263–72
Although physical function is an important patient outcome, little is known about changes in physical function in older adults receiving chemotherapy (CTX).Identify subgroups of older patients based on changes in their level of physical function; determine which demographic and clinical characteristics were associated with subgroup membership; and determine if these subgroups differed on quality-of-life (QOL) outcomes.Latent profile analysis was used to identify groups of older oncology patients (n = 363) with distinct physical function profiles. Patients were assessed six times over two cycles of CTX using the Physical Component Summary score from the Short Form 12. Differences, among the groups, in demographic and clinical characteristics and QOL outcomes were evaluated using parametric and nonparametric tests.Three groups of older oncology patients with distinct functional profiles were identified: Well Below (20.4%), Below (43.8%), and Above (35.8%) normative Physical Component Summary scores. Characteristics associated with membership in the Well Below class included the following: lower annual income, a higher level of comorbidity, being diagnosed with depression and back pain, and lack of regular exercise. Compared with the Above class, patients in the other two classes had significantly poorer QOL outcomes.Almost 65% of older oncology patients reported significant decrements in physical function that persisted over two cycles of CTX. Clinicians can assess for those characteristics associated with poorer functional status to identify high-risk patients and initiate appropriate interventions.
View details for PubMedID 28716620
View details for PubMedCentralID PMC5610084
A randomized pilot trial of a positive affect skill intervention (lessons in linking affect and coping) for women with metastatic breast cancer.
We conducted a randomized pilot trial to examine the feasibility, acceptability, and preliminary efficacy of a 5 week positive affect skills intervention (LILAC: lessons in linking affect and coping) for women with metastatic breast cancer. Additionally, we examined whether online delivery of the intervention would offer comparable benefits as in-person delivery.Women with metastatic breast cancer (N = 39) were randomized to an in-person intervention, online intervention, or in-person attention-matched control. Psychological well-being (depression [Center for Epidemiologic Studies Depression Scale], positive and negative affect [Differential Emotions Scale], cancer-specific quality of life [Multidimensional Quality of Life Scale-Cancer Version]), and positive coping (mindfulness, positive-affect skill use, and self-compassion [Self-Compassion Scale: Short-Form]) were assessed at baseline, 1 week post-intervention, and 1 month post-intervention follow-up.The LILAC intervention showed good feasibility, acceptability, and retention. Although the study was not adequately powered to detect between-group differences in change on preliminary efficacy outcomes, within-group comparisons revealed that LILAC participants (in-person and online combined) showed reductions in depression and negative affect by the 1 month follow-up (d = -0.81). Notably, LILAC participants fell below the clinical threshold for depression (Center for Epidemiologic Studies Depression Scale = 16) by the 1 month follow-up (t = -2.22, P = .04, d = -0.52), whereas control participants did not differ from threshold (t = 0.45, P = .66, d = 0.14).The LILAC intervention, regardless of delivery method, shows feasibility, acceptability, and preliminary efficacy for promoting psychological well-being in women with metastatic breast cancer. This research provides support for a larger randomized trial to test more definitively the potential benefits of LILAC. A strength of the LILAC intervention includes its innovative focus on positive affect. The efficacy of the online delivery suggests the potential for widespread Internet dissemination.
View details for DOI 10.1002/pon.4312
View details for PubMedID 27862646
Getting It "Right".
Journal of empirical research on human research ethics
2016; 11 (4): 291-298
Ethical principles in conducting technology-based research require effective and efficient methods of ensuring adequate informed consent. This study examined how well participants understood the informed consent form for an online postpartum depression trial. Pregnant women ( N = 1,179) who consented to the trial demonstrated an understanding of the purpose (86.1%) and procedures of the study (75.8%), and the minimal risks associated with answering sensitive questions online (79%). Almost all (99.6%) understood that psychological treatment was not offered. Participants with current depression incorrectly indicated that participation would replace current psychological treatment relative to participants with a lifetime or no depression history (19.6% vs. 13.5 % vs. 10.4%, respectively) and that there were no associated risks with participation (29.6% vs.17.6% vs. 16.7%, respectively). Findings provide initial evidence that most individuals who seek online psychological resources are informed consumers.
View details for DOI 10.1177/1556264616668974
View details for PubMedID 27630213
View details for PubMedCentralID PMC5334448
- Getting It "Right": Ensuring Informed Consent for an Online Clinical Trial JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS 2016; 11 (4): 291-298
Factors associated with oncology patients' involvement in shared decision making during chemotherapy.
Oncology patients are increasingly encouraged to play an active role in treatment decision making. While previous studies have evaluated relationships between demographic characteristics and decision-making roles, less is known about the association of symptoms and psychological adjustment characteristics (eg, coping styles and personality traits) and decision-making roles.As part of a larger study of symptom clusters, patients (n = 765) receiving chemotherapy for breast, gastrointestinal, gynecological, or lung cancer provided information on demographic, clinical, symptom, and psychological adjustment characteristics. Patient-reported treatment decision-making roles (ie, preferred role and role actually played) were assessed using the Control Preferences Scale. Differences among patients, who were classified as passive, collaborative, or active, were evaluated using χ(2) analyses and analyses of variance.Over half (56.3%) of the patients reported that they both preferred and actually played a collaborative role. Among those patients with concordant roles, those who were older, those with less education and lower income, and those who were less resilient were more likely to prefer a passive role. Several psychological adjustment characteristics were associated with decision-making role, including coping style, personality, and fatalism.Oncology patients' preferences for involvement in treatment decision making are associated with demographic characteristics as well as with symptoms and psychological adjustment characteristics, such as coping style and personality. These results reaffirm the complexities of predicting patients' preferences for involvement in decision making. Further study is needed to determine if role or coping style may be influenced by interventions designed to teach adaptive coping skills.
View details for DOI 10.1002/pon.4284
View details for PubMedID 27649058
Predictors of Altered Upper Extremity Function During the First Year After Breast Cancer Treatment.
American journal of physical medicine & rehabilitation
2016; 95 (9): 639-655
The purpose of this study was to evaluate trajectories of and predictors for changes in upper extremity (UE) function in women (n = 396) during the first year after breast cancer treatment.Prospective, longitudinal assessments of shoulder range of motion (ROM), grip strength, and perceived interference of function were performed before and for 1 year after surgery. Demographic, clinical, and treatment characteristics were evaluated as predictors of postoperative function.Women had a mean (SD) age of 54.9 (11.6) years, and 64% were white. Small but statistically significant reductions in shoulder ROM were found on the affected side over 12 months (P < 0.001). Predictors of interindividual differences in ROM at the 1-month assessment were ethnicity, neoadjuvant chemotherapy, type of surgery, axillary lymph node dissection, and preoperative ROM. Predictors of interindividual differences in changes over time in postoperative ROM were living alone, type of surgery, axillary lymph node dissection, and adjuvant chemotherapy. Declines in mean grip strength from before through 1 month after surgery were small and not clinically meaningful. Women with greater preoperative breast pain interference scores had higher postoperative interference scores at all postoperative assessments.Some of the modifiable risk factors identified in this study can be targeted for intervention to improve UE function in these women.
View details for DOI 10.1097/PHM.0000000000000455
View details for PubMedID 26829093
View details for PubMedCentralID PMC4967035
Interest in Initiating an Early Phase Clinical Trial: Results of a Longitudinal Study of Advanced Cancer Patients.
Enhanced recruitment of patients with advanced cancer (ACP) to early phase (EP) trials is needed. However, selective recruitment may affect the kinds of patients who are recruited. To address whether ACP who initiate EP trial enrollment differ from those who do not, we prospectively surveyed ACP well in advance of potential trial recruitment and followed them over time to identify those who initiated the recruitment process.EP trial initiation was defined as a patient being referred for screening to an active EP trial. Depression and anxiety were assessed with the Patient Health Questionnaire (PHQ-9) and Generalized Anxiety Disorder Scale (GAD-7), respectively. Demographic and disease characteristics, functional status, and patient preferences regarding decision making were examined as possible predictors of EP trial initiation.Of the 78 advanced cancer patients in the cohort studied, 21 (27%) initiated EP trial participation, while 57 (73%) did not. Of those who initiated this process, 14 (67%) went on to enroll in an EP study. Level of depression severity was associated with EP trial initiation, with rates of initiation nearly three times higher (35% vs. 12%, p = 0.054) among patients with minimal to mild levels of depression compared to those with moderate or higher levels of depression. EP trial initiation was not associated with demographic or socioeconomic variables, cancer type, functional status, quality of life, or decision-making variables.The presence of elevated depressive symptoms may be associated with the EP trial recruitment and enrollment processes. This possible relationship warrants further study.
View details for DOI 10.1002/pon.4179
View details for PubMedID 27233054
Differences in demographic, clinical, and symptom characteristics and quality of life outcomes among oncology patients with different types of pain.
2016; 157 (4): 892-900
The purposes of this study, in oncology outpatients receiving chemotherapy (n = 926), were to: describe the occurrence of different types of pain (ie, no pain, only noncancer pain [NCP], only cancer pain [CP], or both CP and NCP) and evaluate for differences in demographic, clinical, and symptom characteristics, and quality of life (QOL) among the 4 groups. Patients completed self-report questionnaires on demographic and symptom characteristics and QOL. Patients who had pain were asked to indicate if it was or was not related to their cancer or its treatment. Medical records were reviewed for information on cancer and its treatments. In this study, 72.5% of the patients reported pain. Of the 671 who reported pain, 21.5% reported only NCP, 37.0% only CP, and 41.5% both CP and NCP. Across the 3 pain groups, worst pain scores were in the moderate to severe range. Compared with the no pain group, patients with both CP and NCP were significantly younger, more likely to be female, have a higher level of comorbidity, and a poorer functional status. In addition, these patients reported: higher levels of depression, anxiety, fatigue, and sleep disturbance; lower levels of energy and attentional function; and poorer QOL. Patients with only NCP were significantly older than the other 3 groups. The most common comorbidities in the NCP group were back pain, hypertension, osteoarthritis, and depression. Unrelieved CP and NCP continue to be significant problems. Oncology outpatients need to be assessed for both CP and NCP conditions.
View details for DOI 10.1097/j.pain.0000000000000456
View details for PubMedID 26683234
The symptom phenotype of oncology outpatients remains relatively stable from prior to through 1 week following chemotherapy.
European journal of cancer care
Some oncology outpatients experience a higher number of and more severe symptoms during chemotherapy (CTX). However, little is known about whether this high risk phenotype persists over time. Latent transition analysis (LTA) was used to examine the probability that patients remained in the same symptom class when assessed prior to the administration of and following their next dose of CTX. For the patients whose class membership remained consistent, differences in demographic and clinical characteristics, and quality of life (QOL) were evaluated. The Memorial Symptom Assessment Scale (MSAS) was used to evaluate symptom burden. LTA was used to identify subgroups of patients with distinct symptom experiences based on the occurrence of the MSAS symptoms. Of the 906 patients evaluated, 83.9% were classified in the same symptom occurrence class at both assessments. Of these 760 patients, 25.0% were classified as Low-Low, 44.1% as Moderate-Moderate and 30.9% as High-High. Compared to the Low-Low class, the other two classes were younger, more likely to be women and to report child care responsibilities, and had a lower functional status and a higher comorbidity scores. The two higher classes reported lower QOL scores. The use of LTA could assist clinicians to identify higher risk patients and initiate more aggressive interventions.
View details for DOI 10.1111/ecc.12437
View details for PubMedID 26777053
Associations between catecholaminergic, GABAergic, and serotonergic genes and self-reported attentional function in oncology patients and their family caregivers
EUROPEAN JOURNAL OF ONCOLOGY NURSING
2015; 19 (3): 251-259
Evaluate for associations between variations in genes involved in catecholaminergic, gamma-aminobutyric acid (GABA)-ergic, and serotonergic mechanisms of neurotransmission and attentional function latent classes.This descriptive, longitudinal study was conducted at two radiation therapy departments. The sample included three latent classes of individuals with distinct trajectories of self-reported attentional function during radiation therapy, who were previously identified using growth mixture modeling among 167 oncology patients and 85 of their family caregivers. Multivariable models were used to evaluate for genotypic associations of neurotransmission genes with attentional function latent class membership, after controlling for covariates.Variations in catecholaminergic (i.e., ADRA1D rs4815675, SLC6A3 rs37022), GABAergic (i.e., SLC6A1 rs2697138), and serotonergic (i.e., HTR2A rs2296972, rs9534496) neurotransmission genes were significant predictors of latent class membership in multivariable models.Findings suggest that variations in genes that encode for three distinct but related neurotransmission systems are involved in alterations in attentional function. Knowledge of both phenotypic and genetic markers associated with alterations in attentional function can be used by clinicians to identify patients and family caregivers who are at higher risk for this symptom. Increased understanding of the genetic markers associated with alterations in attentional function may provide insights into the underlying mechanisms for this significant clinical problem.
View details for DOI 10.1016/j.ejon.2014.11.004
View details for Web of Science ID 000357905900008
View details for PubMedID 25524657
Cytokine gene variations associated with trait and state anxiety in oncology patients and their family caregivers
SUPPORTIVE CARE IN CANCER
2015; 23 (4): 953-965
Anxiety is common among cancer patients and their family caregivers (FCs) and is associated with poorer outcomes. Recently, associations between inflammation and anxiety were identified. However, the relationship between variations in cytokine genes and anxiety warrants investigation. Therefore, phenotypic and genotypic characteristics associated with trait and state anxiety were evaluated in a sample of 167 oncology patients with breast, prostate, lung, or brain cancer and 85 of their FCs.Using multiple regression analyses, the associations between participants' demographic and clinical characteristics as well as variations in cytokine genes and trait and state anxiety were evaluated.In the bivariate analyses, a number of phenotypic characteristics were associated with both trait and state anxiety (e.g., age, functional status). However, some associations were specific only to trait anxiety (e.g., number of comorbid conditions) or state anxiety (e.g., participation with a FC). Variations in three cytokine genes (i.e., interleukin (IL) 1 beta, IL1 receptor 2 (IL1R2), nuclear factor kappa beta 2 (NFKB2)) were associated with trait anxiety, and variations in two genes (i.e., IL1R2, tumor necrosis factor alpha (TNFA)) were associated with state anxiety.These findings suggest that both trait and state anxiety need to be assessed in oncology patients and their FCs. Furthermore, variations in cytokine genes may contribute to higher levels of anxiety in oncology patients and their FCs.
View details for DOI 10.1007/s00520-014-2443-5
View details for Web of Science ID 000350496500010
View details for PubMedID 25249351
A Systematic Review and Meta-analysis of Psychotherapy for Late-Life Depression
AMERICAN JOURNAL OF GERIATRIC PSYCHIATRY
2015; 23 (3): 261-273
To determine the efficacy of psychotherapy in late-life depression and to determine the effect of the type of control group on the magnitude of psychotherapy effects.A systematic review and meta-analysis of randomized controlled psychotherapy trials for late-life depression.Outpatient clinics or in subjects' home.Subjects aged 55 years or older with acute-phase depressive disorder.Change in depressive symptoms was measured with validated scales. Standardized mean differences (SMD) were calculated for each therapy-control contrast, as meta-analytic summaries for contrasts using a similar control, and for all contrasts combined.The search identified 27 trials with 37 therapy-control contrasts and 2,245 subjects. Trials utilized five types of control groups (waitlist, treatment-as-usual, attention, supportive therapy, placebo). In the combined contrasts, psychotherapy was effective (SMD: 0.73; 95% confidence interval [CI]: 0.51, 0.95; z=6.42, p<0.00001). The SMD varied widely (from 0.05 to 1.36) and significantly (χ2=35.67, df=4, p<0.00001) between subgroups by type of control. In five trials that compared psychotherapy with supportive therapy, the SMD was 0.39 (95% CI: 0.16, 0.61; z=3.37, p<0.0007; I2=0%). The SMD was 0.11 within the waitlist controls and 1.10 within the supportive therapy subgroup.Psychotherapy is effective for late-life depression, but the magnitude of the effect varies widely with the type of control group. Supportive therapy appears to best control for the nonspecific elements of psychotherapy and is associated with considerable change itself, but few trials have utilized it as a control.
View details for DOI 10.1016/j.jagp.2014.04.003
View details for Web of Science ID 000349404600006
View details for PubMedID 24856580
Predictors of Initial Levels and Trajectories of Anxiety in Women Before and for 6 Months After Breast Cancer Surgery
2014; 37 (6): 406-417
The diagnosis of breast cancer, in combination with the anticipation of surgery, evokes fear, uncertainty, and anxiety in most women.Study purposes were to examine in patients who underwent breast cancer surgery how ratings of state anxiety changed from the time of the preoperative assessment to 6 months after surgery and to investigate whether specific demographic, clinical, symptom, and psychosocial adjustment characteristics predicted the preoperative levels of state anxiety and/or characteristics of the trajectories of state anxiety.Patients (n = 396) were enrolled preoperatively and completed the Spielberger State Anxiety inventory monthly for 6 months. Using hierarchical linear modeling, demographic, clinical, symptom, and psychosocial adjustment characteristics were evaluated as predictors of initial levels and trajectories of state anxiety.Patients experienced moderate levels of anxiety before surgery. Higher levels of depressive symptoms and uncertainty about the future, as well as lower levels of life satisfaction, less sense of control, and greater difficulty coping, predicted higher preoperative levels of state anxiety. Higher preoperative state anxiety, poorer physical health, decreased sense of control, and more feelings of isolation predicted higher state anxiety scores over time.Moderate levels of anxiety persist in women for 6 months after breast cancer surgery.Clinicians need to implement systematic assessments of anxiety to identify high-risk women who warrant more targeted interventions. In addition, ongoing follow-up is needed to prevent adverse postoperative outcomes and to support women to return to their preoperative levels of function.
View details for DOI 10.1097/NCC.0000000000000131
View details for Web of Science ID 000344272400007
View details for PubMedID 24633334
Trajectories of Depressive Symptoms in Women Prior to and for Six Months After Breast Cancer Surgery.
Journal of applied biobehavioral research
2014; 19 (2): 79-105
Depressive symptoms are common in women with breast cancer. This study evaluated how ratings of depressive symptoms changed from the time of the preoperative assessment to 6 months after surgery and investigated whether specific demographic, clinical, and symptom characteristics predicted preoperative levels of and/or characteristics of the trajectories of depressive symptoms. Characteristics that predicted higher preoperative levels of depressive symptoms included being married/partnered; receipt of adjuvant chemotherapy; more fear of metastasis; higher levels of trait anxiety, state anxiety, sleep disturbance, problems with changes in appetite; more hours per day in pain; and lower levels of attentional function. Future studies need to evaluate associations between anxiety, fears of recurrence, and uncertainty, as well as personality characteristics and depressive symptoms.
View details for PubMedID 25382962
Preliminary Evidence of an Association Between an Interleukin 6 Promoter Polymorphism and Self-Reported Attentional Function in Oncology Patients and Their Family Caregivers
BIOLOGICAL RESEARCH FOR NURSING
2014; 16 (2): 152-159
Subgroups of individuals may be at greater risk of cytokine-induced changes in attentional function. The purposes of this study were to identify subgroups of individuals with distinct trajectories of attentional function and evaluate for phenotypic and genotypic (i.e., cytokine gene polymorphisms) differences among these subgroups. Self-reported attentional function was evaluated in 252 participants (167 oncology patients and 85 family caregivers) using the Attentional Function Index before radiation therapy and at six additional assessments over 6 months. Three latent classes of attentional function were identified using growth mixture modeling: moderate (36.5%), moderate-to-high (48.0%), and high (15.5%) attentional function. Participants in the moderate class were significantly younger, with more comorbidities and lower functional status, than those in the other two classes. However, only functional status remained significant in multivariable models. Included in the genetic association analyses were 92 single nucleotide polymorphisms (SNPs) among 15 candidate genes. Additive, dominant, and recessive genetic models were assessed for each SNP. Controlling for functional status, only Interleukin 6 (IL6) rs1800795 remained a significant genotypic predictor of class membership in multivariable models. Each additional copy of the rare "G" allele was associated with a 4-fold increase in the odds of belonging to the lower attentional function class (95% confidence interval: [1.78, 8.92]; p = .001). Findings provide preliminary evidence of subgroups of individuals with distinct trajectories of attentional function and of a genetic association with an IL6 promoter polymorphism.
View details for DOI 10.1177/1099800413479441
View details for Web of Science ID 000331704600005
View details for PubMedID 23482714
Association between an interleukin 1 receptor, type I promoter polymorphism and self-reported attentional function in women with breast cancer
2014; 65 (2): 192-201
Subgroups of patients with breast cancer may be at greater risk for cytokine-induced changes in cognitive function after diagnosis and during treatment. The purposes of this study were to identify subgroups of patients with distinct trajectories of attentional function and evaluate for phenotypic and genotypic (i.e., cytokine gene polymorphisms) predictors of subgroup membership. Self-reported attentional function was evaluated in 397 patients with breast cancer using the Attentional Function Index before surgery and for six months after surgery (i.e., seven time points). Using growth mixture modeling, three attentional function latent classes were identified: High (41.6%), Moderate (25.4%), and Low-moderate (33.0%). Patients in the Low-moderate class were significantly younger than those in the High class, with more comorbidities and lower functional status than the other two classes. No differences were found among the classes in years of education, race/ethnicity, or other clinical characteristics. DNA was recovered from 302 patients' samples. Eighty-two single nucleotide polymorphisms among 15 candidate genes were included in the genetic association analyses. After controlling for age, comorbidities, functional status, and population stratification due to race/ethnicity, IL1R1 rs949963 remained a significant genotypic predictor of class membership in the multivariable model. Carrying the rare "A" allele (i.e., GA+AA) was associated with a twofold increase in the odds of belonging to a lower attentional function class (OR: 1.98; 95% CI: 1.18, 3.30; p=.009). Findings provide evidence of subgroups of women with breast cancer who report distinct trajectories of attentional function and of a genetic association between subgroup membership and an IL1R1 promoter polymorphism.
View details for DOI 10.1016/j.cyto.2013.11.003
View details for Web of Science ID 000331500000013
View details for PubMedID 24315345
Assessing Professionalism and Ethics Knowledge and Skills: Preferences of Psychiatry Residents
2013; 37 (6): 392-397
Professionalism is one of the fundamental expectations and a core competency in residency education. Although programs use a variety of evaluative methods, little is known about residents' views of and preferences regarding various methods of assessment.The authors surveyed residents at seven psychiatry residency programs in the United States regarding their attitudes on professionalism, ethics preparation, and evaluation in psychiatry residency training. This report describes their views on methods of assessing professionalism.Residents strongly agreed that clinical supervision is an appropriate assessment method. Moreover, they rated clinical supervision more highly than oral examinations, short-answer questions, essays, and standardized patient interactions. Residents also strongly favored direct faculty observation of residents' interactions with actual patients and clinical team members.This study suggests that both direct faculty supervision and other clinically-based assessments are methods accepted by psychiatry residents. Future research on the validity and effectiveness of these modes of assessment is needed.
View details for Web of Science ID 000326561500006
View details for PubMedID 23771251
Alternative Decision-Makers' Perspectives on Assent and Dissent for Dementia Research
AMERICAN JOURNAL OF GERIATRIC PSYCHIATRY
2013; 21 (4): 346-354
Investigators generally address the ethical dilemma of patients' decisional impairment in Alzheimer disease (AD) research by obtaining consent from alternative or surrogate decision makers ("proxies") as well as assent from patients. How these proxies conceptualize patient assent, or lack of objection, to participate may influence decisions made of the patients' behalf, but has been little studied. This report examines statements of proxies relevant to how they conceptualized assent and dissent to research.Surveys and in-depth interviews of proxies presented with hypothetical scenario related to enrolling relatives with AD in a clinical trial of an investigational drug for AD.Proxies (n = 25) for people with AD.Open-ended and rating-scaled items assessing perspectives on enrollment in research, influences on decision-making, and willingness to override a relative's preferences regarding research participation. Statements with relevance to assent or dissent were coded.Proxies described looking for consistent behavioral or verbal indications of assent versus objection when trying to determine patients' preferences. However, proxies sometimes expressed willingness to override patients' desires in favor of patients' presumed best interests. The amnestic nature of the disorder led some proxies to justify overriding temporary dissent or discomfort in the interest of promoting patients' values. Patients' dependence on their caregivers for decision-making, and caregivers' awareness of their ability to persuade their relatives, also emerged in descriptions of the decision-making process.Proxies' statements regarding a hypothetical research enrollment decision revealed several themes with implications for the concepts of assent and dissent. Proxies may persuade or influence patients to promote the patient's best interests or values. Further work, particularly examining actual decision-making, is warranted to determine how best to operationalize the concepts of assent and dissent in the context of research involving decisionally impaired adults.
View details for DOI 10.1016/j.jagp.2013.01.027
View details for Web of Science ID 000330355800005
View details for PubMedID 23498381
"Thinking About It for Somebody Else": Alzheimer's Disease Research and Proxy Decision Makers' Translation of Ethical Principles Into Practice
AMERICAN JOURNAL OF GERIATRIC PSYCHIATRY
2013; 21 (4): 337-345
Ethical guidelines suggest that, when enrolling patients with dementia in research, alterative decision makers (proxies) should base their decision on a "substituted judgment" of how the patient would have decided. If unable to make a substituted judgment, proxies are asked to decide on the basis of the patient's best interests. This mixed-methods study is the first to examine explicitly whether and to what degree proxies differentiate between these two approaches and what considerations influence their mode of decision making.Interview study regarding enrollment of relative in hypothetical clinical trial of an investigational drug for Alzheimer disease. Participants were randomized to respond to questions about one of four hypothetical clinical trials that differed by levels of described risk and potential benefit.Proxy decision makers (N = 40).Open-ended and rating-scaled items.Half of the proxies agreed with both of two rating-scaled items asking about different approaches to decision making-that is, agreeing that they would decide on the basis of how their relative would have decided and agreeing that they would decide on the basis of what they believed was in their relative's best interests. Narrative responses elaborated on themes within the following three major domains: Substituted judgment, best interests, and weighing substituted judgment and best interests. Substituted judgment was framed as honoring the patient's wishes and values. Best interests was described as a perceived duty to maintain quality of life and avoid burdens or risks. Weighing the two standards emerged as a challenging yet important, way of honoring wishes while maintaining quality of life. An unexpected theme was the attempt by alternative decision makers to discern their loved one's current versus premorbid research preferences.Tensions exist between abstract ethical principles regarding decision-making "standards" and their translation into research decisions.
View details for DOI 10.1016/j.jagp.2012.11.014
View details for Web of Science ID 000330355800004
View details for PubMedID 23498380
View details for PubMedCentralID PMC3381872
Amyloid imaging, risk disclosure and Alzheimer's disease: ethical and practical issues.
Neurodegenerative disease management
2013; 3 (3): 219-229
PET ligands that bind with high specificity to amyloid plaques represent a major breakthrough in Alzheimer's disease (AD) research. Amyloid neuroimaging is now approved by the US FDA to aid in the diagnosis of AD, and is being used to identify amyloid-positive but asymptomatic individuals for secondary AD prevention trials. The use of amyloid neuroimaging in preclinical populations raises important ethical and practical challenges, including determining appropriate uses of this technology, evaluating the potential benefits and harms of disclosing results, and communicating effectively about testing with patients and family members. Emerging policy issues also require consideration (e.g., legal safeguards for biomarker-positive individuals). Further research is needed to inform effective and ethical implementation and regulation of amyloid imaging.
View details for PubMedID 26167204
Evidence of Associations between Cytokine Genes and Subjective Reports of Sleep Disturbance in Oncology Patients and Their Family Caregivers
2012; 7 (7)
The purposes of this study were to identify distinct latent classes of individuals based on subjective reports of sleep disturbance; to examine differences in demographic, clinical, and symptom characteristics between the latent classes; and to evaluate for variations in pro- and anti-inflammatory cytokine genes between the latent classes. Among 167 oncology outpatients with breast, prostate, lung, or brain cancer and 85 of their FCs, growth mixture modeling (GMM) was used to identify latent classes of individuals based on General Sleep Disturbance Scale (GSDS) obtained prior to, during, and for four months following completion of radiation therapy. Single nucleotide polymorphisms (SNPs) and haplotypes in candidate cytokine genes were interrogated for differences between the two latent classes. Multiple logistic regression was used to assess the effect of phenotypic and genotypic characteristics on GSDS group membership. Two latent classes were identified: lower sleep disturbance (88.5%) and higher sleep disturbance (11.5%). Participants who were younger and had a lower Karnofsky Performance status score were more likely to be in the higher sleep disturbance class. Variation in two cytokine genes (i.e., IL6, NFKB) predicted latent class membership. Evidence was found for latent classes with distinct sleep disturbance trajectories. Unique genetic markers in cytokine genes may partially explain the interindividual heterogeneity characterizing these trajectories.
View details for DOI 10.1371/journal.pone.0040560
View details for Web of Science ID 000306687700013
View details for PubMedID 22844404
View details for PubMedCentralID PMC3402493
EVALUATION OF THE CONTENT AND PROCESS OF INFORMED CONSENT DISCUSSIONS FOR NEONATAL RESEARCH
JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS
2012; 7 (3): 78-83
Studies of informed consent for neonatal research suggest that there are gaps in parental understanding of key aspects of research. Few studies have examined parental understanding and investigator disclosure simultaneously. This pilot study evaluated the content and processes of 21 audio-recorded consent discussions with parents of eligible newborns, as well as parents' self-reported comprehension of research elements following these discussions. Gaps in both investigator disclosure and parental understanding were found. Nevertheless, parents reported comprehension of a greater number of research elements than were actually disclosed by investigators. Our preliminary results indicate the feasibility and potential utility of jointly examining parental understanding and investigator behavior to characterize consent for neonatal research. Directions for future research are suggested.
View details for DOI 10.1525/jer.2012.7.3.78
View details for Web of Science ID 000307321900007
View details for PubMedID 22850145
Participants' Perceptions of Deep Brain Stimulation Research for Treatment-Resistant Depression: Risks, Benefits, and Therapeutic Misconception.
AJOB primary research
2011; 2 (4): 33-41
Deep brain stimulation (DBS) for treatment-resistant depression (TRD) is the focus of great interest and numerous studies. Given the state of this research, the risks of DBS, the uncertainty of direct benefits, and the potential for therapeutic misconception (TM), examination of research participants' perspectives is critical to addressing concerns about the adequacy of consent among people with TRD.Among 31 participants considering DBS studies at two sites, self-report questionnaires were used to examine three dimensions of TM (eight true/false items). Additional Likert-scale items assessed perceptions of risks, potential benefits, and altruistic motivations.Participants correctly identified the surgery itself as the riskiest study procedure, although only four participants rated the surgery as "high risk." Most participants rated the entire DBS study as "moderate" or lower risk. Participants rated the likelihood of others benefiting in the future more strongly than they did the likelihood of personal benefit. Participants held positive attitudes toward research, and were moderately altruistic. Nearly two-thirds of the 31 participants (64.5%) answered at least one of the true/false TM items incorrectly.Individuals considering DBS studies for TRD demonstrated reasonable perceptions of risks and benefits, distinguished among procedural risks, and expressed hopes for personal benefit as well as altruism. Findings related to TM were mixed: Participants understood the experimental stage of DBS for depression and endorsed the possibility of no personal benefit, yet there was some evidence for TM. Although these findings are reassuring, investigators must nevertheless remain vigilant about identifying and addressing potential misconceptions.
View details for PubMedID 26225215
Decisional capacity and consent for schizophrenia research.
2011; 33 (4): 1-9
View details for PubMedID 21932481
Sleep-Wake Circadian Activity Rhythm Parameters and Fatigue in Oncology Patients Before the Initiation of Radiation Therapy
2011; 34 (4): 255-268
Little is known about the relationships between sleep parameters and fatigue in patients at the initiation of radiation therapy (RT).The objectives of this study were to describe values for nocturnal sleep/rest, daytime wake/activity, and circadian activity rhythm parameters measured using actigraphy and to evaluate the relationships between these objective parameters and subjective ratings of sleep disturbance and fatigue severity, in a sample of patients at the initiation of RT.Patients (n = 185) with breast, prostate, lung, or brain cancer completed self-report measures for sleep disturbance (ie, Pittsburgh Sleep Quality Index, General Sleep Disturbance Scale) and fatigue (Lee Fatigue Scale) and wore wrist actigraphs for a total of 48 hours prior to beginning RT. Actigraphy data were analyzed using the Cole-Kripke algorithm. Spearman rank correlations were calculated between variables.Approximately 30% to 50% of patients experienced sleep disturbance, depending on whether clinically significant cutoffs for the subjective or objective measures were used to calculate occurrence rates. In addition, these patients reported moderate levels of fatigue. Only a limited number of significant correlations were found between the subjective and objective measures of sleep disturbance. Significant positive correlations were found between the subjective, but not the objective measures of sleep disturbance and fatigue.A significant percentage of oncology patients experience significant disturbances in sleep-wake circadian activity rhythms at the initiation of RT. The disturbances occur in both sleep initiation and sleep maintenance.Patients need to be assessed at the initiation of RT for sleep disturbance, so appropriate treatment is initiated.
View details for DOI 10.1097/NCC.0b013e3181f65d9b
View details for Web of Science ID 000291674900005
View details for PubMedID 21252646
Results of a Multisite Survey of US Psychiatry Residents on Education in Professionalism and Ethics
2011; 35 (3): 175-183
The authors assess the perspectives of psychiatry residents about the goals of receiving education in professionalism and ethics, how topics should be taught, and on what ethical principles the curriculum should be based.A written survey was sent to psychiatry residents (N=249) at seven U.S. residency programs in Spring 2005. The survey was based on an instrument originally developed at the University of New Mexico, consisting of 149 questions in 10 content domains, with 6 questions regarding ethics experiences during training and 5 demographic questions.A total of 151 psychiatry residents (61%) returned usable responses to our survey. Residents reported receiving a moderate amount of ethics training during medical school (mean: 5.20; scale: 1: None to 9: Very Much) and some ethics training during residency (mean: 4.60). Residents endorsed moderate to moderately-strong agreement with all 11 goals of medical education in professionalism and ethics (means: 5.29 to 7.49; scale: 1: Strongly Disagree to 9: Strongly Agree). Respondents were more likely to endorse the value of clinically- and expert-oriented learning methods over web-based educational approaches.U.S. psychiatry residents endorse a range of goals for education in professionalism and ethics. At the same time, they prefer that these topics be taught in clinically relevant ways and through expert instruction. The value of web-based approaches warrants further investigation.
View details for Web of Science ID 000290787500005
View details for PubMedID 21602439
Psychiatric Residents' Needs for Education About Informed Consent, Principles of Ethics and Professionalism, and Caring for Vulnerable Populations: Results of a Multisite Survey
2011; 35 (3): 184-190
The authors examined psychiatric residents' perceived needs for education in informed consent, principles of ethics and professionalism, and treating vulnerable populations.A written survey was distributed to psychiatric residents (N=249) at seven U.S. residency programs in 2005. The survey contained 149 questions in 10 content domains, 6 questions regarding personal ethics experiences during training, and 5 demographic questions. Here, the authors report responses to items regarding informed consent, professional principles, and care of vulnerable populations.A total of 151 psychiatric residents responded to the survey (61% overall response rate). On a scale of 1: Much Less, to 5: Same, to 9: Much More Education Desired, psychiatric residents indicated that 9 topics relating to informed consent, 10 issues surrounding professional principles, and 25 topics relating to care of vulnerable populations should receive more educational attention than currently provided. No topics were rated as needing less education. Higher ratings of the need for additional educational attention were associated with more reported ethical conflicts encountered during training.Psychiatric residents at seven diverse U.S. training programs expressed the need for greater educational attention to issues around informed consent, ethical and professional principles, and treating vulnerable populations. These findings reflect the ongoing need for educators to devote curricular attention to these areas so that trainees can incorporate such knowledge effectively into their daily clinical practice in an always-complex, highly fragmented medical care environment.
View details for Web of Science ID 000290787500006
View details for PubMedID 21602440
Differences in Sleep Disturbance Parameters Between Oncology Outpatients and Their Family Caregivers
JOURNAL OF CLINICAL ONCOLOGY
2011; 29 (8): 1001-1006
This study compared the occurrence rates for and severity ratings of sleep disturbance in patient-family caregiver (FC) dyads.In total, 102 dyads were recruited from two radiation therapy (RT) departments. Patients and their FCs completed the Pittsburgh Sleep Quality Index (PSQI) and the General Sleep Disturbance Scale (GSDS) and wore wrist actigraphs to obtain subjective and objective measures of the occurrence and severity of sleep disturbance at the initiation of RT. Match paired t tests were used to evaluate for dyadic differences.No differences were found in the occurrence of clinically significant levels of sleep disturbance between patients and their FCs that ranged between 40% and 50% using subjective and objective measures. Few differences were found in the severity of any of the sleep-wake parameters between patients and FCs using both the subjective and objective measures of sleep disturbance.The findings from this study suggest that patients with cancer and their FCs experience similar levels of sleep disturbance and that both groups could benefit from interventions that aim to promote restful sleep. In addition to routine and systematic assessment of sleep disturbance by oncology clinicians, interventions are needed that take into account the specific needs of the patient and the FC as well as the potential for partners' sleep patterns to influence one another.
View details for DOI 10.1200/JCO.2010.30.9104
View details for Web of Science ID 000288161000023
View details for PubMedID 21282549
Psychiatric residents' interest in psychotherapy and training stage: a multi-site survey.
American journal of psychotherapy
2011; 65 (1): 47-59
Most psychiatric residents enter training intent on learning both psychopharmacologic and psychotherapeutic interventions. After graduation, however, many emphasize pharmacotherapy over psychotherapy.A multisite survey of psychiatry residents queried psychotherapy interests, attitudes, and practice intentions. Factors associated with self-reported decreased interest in psychotherapy since beginning residency were examined.Although 11.8% of the entire sample (n = 229 PGY1-PGY4 residents) reported decreased interest in psychotherapy during training, among PGY4s the corresponding figure was 16.4%. Positive attitudes towards psychotherapy, and self-perceived competence in cognitive-behavioral and psychodynamic psychotherapy were most highly correlated with maintained interest in psychotherapy. Dissatisfaction with the quality of psychotherapy faculty and curriculum, and viewing departmental leadership as unsupportive of psychotherapy training were correlated with decreased interest during training.Maintaining residents' interest in psychotherapy requires improvements in curriculum, teaching, and supervision throughout training. Our data underscore the crucial role that departmental leadership must play in supporting trainees' goals of becoming comprehensively trained psychiatrists.
View details for PubMedID 21488519
Ethical Issues in Deep Brain Stimulation Research for Treatment-Resistant Depression: Focus on Risk and Consent.
2011; 2 (1): 29-36
Deep brain stimulation (DBS) is currently in pivotal trials as an intervention for treatment-resistant depression (TRD). Although offering hope for TRD, DBS also provokes ethical concerns-particularly about decision-making capacity of people with depression-among bioethicists, investigators, institutional review boards, and the public. Here, we examine this critical issue of informed consent for DBS research using available evidence regarding decision-making capacity and depression. Further, we explore the implications of the nature of TRD as well as that of the intervention (invasive brain surgery) for informed consent. Based on these analyses, we argue that additional safeguards specific to DBS research for TRD, beyond those that might be used in any higher risk study, are not supported by available empirical evidence. We nevertheless underscore the limited data on such invasive procedures in severely ill psychiatric patients and advocate a research agenda for the systematic study of ethical issues raised by these research endeavors.
View details for PubMedID 26229726
Multimedia Consent for Research in People With Schizophrenia and Normal Subjects: a Randomized Controlled Trial
2009; 35 (4): 719-729
Limitations of printed, text-based, consent forms have long been documented and may be particularly problematic for persons at risk for impaired decision-making capacity, such as those with schizophrenia. We conducted a randomized controlled comparison of the effectiveness of a multimedia vs routine consent procedure (augmented with a 10-minute control video presentation) as a means of enhancing comprehension among 128 middle-aged and older persons with schizophrenia and 60 healthy comparison subjects. The primary outcome measure was manifest decisional capacity (understanding, appreciation, reasoning, and expression of choice) for participation in a (hypothetical) clinical drug trial, as measured with the MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR) and the University of California San Diego (UCSD) Brief Assessment for Capacity to Consent (UBACC). The MacCAT-CR and UBACC were administered by research assistants kept blind to consent condition. Additional assessments included standardized measures of psychopathology and cognitive functioning. Relative to patients in the routine consent condition, schizophrenia patients receiving multimedia consent had significantly better scores on the UBACC and on the MacCAT-CR understanding and expression of choice subscales and were significantly more likely to be categorized as being capable to consent than those in the routine consent condition (as categorized with several previously established criteria). Among the healthy subjects, there were few significant effects of consent condition. These findings suggest that multimedia consent procedures may be a valuable consent aid that should be considered for use when enrolling participants at risk for impaired decisional capacity, particularly for complex and/or high-risk research protocols.
View details for DOI 10.1093/schbul/sbm148
View details for Web of Science ID 000268241700011
View details for PubMedID 18245061
View details for PubMedCentralID PMC2696362
Effective use of consent forms and interactive questions in the consent process.
2008; 30 (2): 8-12
View details for PubMedID 18512654
Multimedia educational aids for improving consumer knowledge about illness management and treatment decisions: A review of randomized controlled trials
JOURNAL OF PSYCHIATRIC RESEARCH
2008; 42 (1): 1-21
Psychiatric practice is becoming increasingly more complex in terms of the available treatment options, use of new technologies for assessments, and a need for psychiatric patients and their caregivers to be familiar with general medical procedures. This trend will only intensify in the years to come. Routine methods of providing information relevant to clinical decision making about healthcare evaluations or management are often suboptimal. Relatively little research has been done on enhancing the capacity of psychiatric patients and the caregivers to make truly informed decisions about management. In this paper, we review studies that compared the effects of multimedia (video- or computer-based) educational aids with those of routine procedures to inform healthcare consumers about medical evaluations or management. Although most of these investigations were conducted in non-psychiatric patients, the results should be relevant for psychiatric practice of tomorrow. We searched MEDLINE, PsycINFO, and CINAHL bibliographic databases. Randomized controlled trials that used objective measures of knowledge or understanding of the information provided were selected. Studies were rated as positive if the multimedia educational aid resulted in a greater improvement in knowledge or understanding than the control condition. The quality of each study was also rated using a newly developed Scale for Assessing Scientific Quality of Investigations (SASQI). A total of 37 randomized controlled trials were identified. Nearly two-thirds of the studies (23/37) in diverse patient populations and for varied medical assessments and treatments reported that multimedia educational aids produced better understanding of information compared to routine methods. SASQI scores for the positive and negative studies were comparable, suggesting that lower quality was not related to positive findings. In conclusion, multimedia educational aids hold promise for improving the provision of complex medical information to patients and caregivers. It is likely that as psychiatric patients and their treating clinicians face increasingly complex choices regarding mental health treatment, multimedia decisional aids could become an effective supplement to the clinician patient interaction in near future.
View details for DOI 10.1016/j.jpsychires.2006.10.004
View details for Web of Science ID 000250973200001
View details for PubMedID 17275026
A new brief instrument for assessing decisional capacity for clinical research
ARCHIVES OF GENERAL PSYCHIATRY
2007; 64 (8): 966-974
There is a critical need for practical measures for screening and documenting decisional capacity in people participating in different types of clinical research. However, there are few reliable and validated brief tools that could be used routinely to evaluate individuals' capacity to consent to a research protocol.To describe the development, testing, and proposed use of a new practical instrument to assess decision-making capacity: the University of California, San Diego Brief Assessment of Capacity to Consent (UBACC). The UBACC is intended to help investigators identify research participants who warrant more thorough decisional capacity assessment and/or remediation efforts prior to enrollment.We developed the UBACC as a 10-item scale that included questions focusing on understanding and appreciation of the information concerning a research protocol. It was developed and tested among middle-aged and older outpatients with schizophrenia and healthy comparison subjects participating in research on informed consent. In an investigation of reliability and validity, we studied 127 outpatients with schizophrenia or schizoaffective disorder and 30 healthy comparison subjects who received information about a simulated clinical drug trial. Internal consistency, interrater reliability, and concurrent (criterion) validity (including correlations with an established instrument as well as sensitivity and specificity relative to 2 potential "gold standard" criteria) were measured.Reliability and validity of the UBACC.The UBACC was found to have good internal consistency, interrater reliability, concurrent validity, high sensitivity, and acceptable specificity. It typically took less than 5 minutes to administer, was easy to use and reliably score, and could be used to identify subjects with questionable capacity to consent to the specific research project.The UBACC is a potentially useful instrument for screening large numbers of subjects to identify those needing more comprehensive decisional capacity assessment and/or remediation efforts.
View details for Web of Science ID 000248542600011
View details for PubMedID 17679641