I have been a qualitative health services researcher since 2006 and am experienced in mixed methods research and evaluation. I use a range of methods in my work including interviews, focus groups, ethnography, participant observation, document review, survey and literature reviews. My content areas of focus have been in implementation science within the clinical areas of palliative care and oncology. Through this work, I have become familiar with the challenges and ethical issues of conducting research with vulnerable groups and appropriate methods for eliciting information in sensitive subject areas, such as in exploring what bereaved family caregivers think makes for a good death. My specific research interest is in understanding the patient experience of health services in order to improve the implementation and delivery of services. I also enjoy engaging with patients as partners in the research process, from research question formulation through to dissemination. I have also worked with professional groups and stakeholders, both as participants and as collaborators in research and evaluation.
Prior to this appointment at Stanford, I was a Research Fellow in the Centre for Health Services Studies at the University of Kent, UK.
Current Role at Stanford
Senior Research Scholar
Education & Certifications
PhD, University of Kent, Social Policy (2016)
MSc, Canterbury Christ Church University, Health Promotion and Public Health (2006)
BA, University of California, San Diego, Psychology (2005)
Research Fellow, Centre for Health Services Studies, University of Kent (1/2014 - 9/2015)
Research Design Service - South East Adviser, Centre for Health Services Studies, University of Kent (4/2015 - 9/2015)
Research Associate, Centre for Health Services Studies, University of Kent (12/2006 - 12/2013)
Research Assistant, Canterbury Christ Church University (9/2005 - 8/2006)
Caregiver Experiences Participating in a Home-Based Primary Care Program: A Pragmatic Evaluation Including Qualitative Interviews and Quantitative Surveys.
Journal of applied gerontology : the official journal of the Southern Gerontological Society
The aim of this evaluation was to assess caregiver experience and burden during their first year in a geriatric home-based primary care (HBPC) program with qualitative interviews and surveys. HBPC included in-home visits for homebound, older adult patients. Seventeen caregivers, with varied amount of experience with HBPC, participated in semi-structured interviews. Change in caregiver burden from baseline was captured for 44 caregivers at 3months post-enrollment, 27 caregivers at 6months, and 22 caregivers at 12months. Satisfaction survey was administered at these timepoints, but the last response of 48 caregivers was analyzed. Caregiver interviews revealed three themes: caregiving stressors, reliance on HBPC in relation to other medical care, and healthcare in the home. Surveyed caregivers were highly satisfied, but burden did not change substantially over the 1year intervention. Caregivers appreciated HBPC reduced patient transportation and provided satisfactory primary care, but additional research is needed to tailor this care to reduce caregiver burden.
View details for DOI 10.1177/07334648231176380
View details for PubMedID 37269325
Effect of Perioperative Palliative Care on Health-Related Quality of Life Among Patients Undergoing Surgery for Cancer: A Randomized Clinical Trial.
JAMA network open
2023; 6 (5): e2314660
Involvement of palliative care specialists in the care of medical oncology patients has been repeatedly observed to improve patient-reported outcomes, but there is no analogous research in surgical oncology populations.To determine whether surgeon-palliative care team comanagement, compared with surgeon team alone management, improves patient-reported perioperative outcomes among patients pursuing curative-intent surgery for high morbidity and mortality upper gastrointestinal (GI) cancers.From October 20, 2018, to March 31, 2022, a patient-randomized clinical trial was conducted with patients and clinicians nonblinded but the analysis team blinded to allocation. The trial was conducted in 5 geographically diverse academic medical centers in the US. Individuals pursuing curative-intent surgery for an upper GI cancer who had received no previous specialist palliative care were eligible. Surgeons were encouraged to offer participation to all eligible patients.Surgeon-palliative care comanagement patients met with palliative care either in person or via telephone before surgery, 1 week after surgery, and 1, 2, and 3 months after surgery. For patients in the surgeon-alone group, surgeons were encouraged to follow National Comprehensive Cancer Network-recommended triggers for palliative care consultation.The primary outcome of the trial was patient-reported health-related quality of life at 3 months following the operation. Secondary outcomes were patient-reported mental and physical distress. Intention-to-treat analysis was performed.In total, 359 patients (175 [48.7%] men; mean [SD] age, 64.6 [10.7] years) were randomized to surgeon-alone (n = 177) or surgeon-palliative care comanagement (n = 182), with most patients (206 [57.4%]) undergoing pancreatic cancer surgery. No adverse events were associated with the intervention, and 11% of patients in the surgeon-alone and 90% in the surgeon-palliative care comanagement groups received palliative care consultation. There was no significant difference between study arms in outcomes at 3 months following the operation in patient-reported health-related quality of life (mean [SD], 138.54 [28.28] vs 136.90 [28.96]; P = .62), mental health (mean [SD], -0.07 [0.87] vs -0.07 [0.84]; P = .98), or overall number of deaths (6 [3.7%] vs 7 [4.1%]; P > .99).To date, this is the first multisite randomized clinical trial to evaluate perioperative palliative care and the earliest integration of palliative care into cancer care. Unlike in medical oncology practice, the data from this trial do not suggest palliative care-associated improvements in patient-reported outcomes among patients pursuing curative-intent surgeries for upper GI cancers.ClinicalTrials.gov Identifier: NCT03611309.
View details for DOI 10.1001/jamanetworkopen.2023.14660
View details for PubMedID 37256623
Factors influencing pediatric transfusion: A complex decision impacting quality of care.
The risks of red blood cell transfusion may outweigh the benefits for many patients in pediatric intensive care units (PICUs), but guidelines from the Transfusion and Anemia eXpertise Initiative (TAXI) have not been consistently adopted. We sought to identify factors that influenced transfusion decision-making in PICUs to explore potential barriers and facilitators to implementing the guidelines.A total of 50 ICU providers working in eight US ICUs of different types (non-cardiac PICUs, cardiovascular ICUs, combined units) and variable sizes (11-32 beds) completed semi-structured interviews. Providers included ICU attendings and trainees, nurse practitioners, nurses, and subspecialty physicians. Interviews examined factors that influenced transfusion decisions, transfusion practices, and provider beliefs. Qualitative analysis utilized a Framework Approach. Summarized data was compared between provider roles and units with consideration to identify patterns and unique informative statements.Providers cited clinical, physiologic, anatomic, and logistic factors they considered in making transfusion decisions. Improving oxygen carrying capacity, hemodynamics and perfusion, respiratory function, volume deficits, and correcting laboratory values were among the reasons given for transfusion. Other sought-after benefits included alleviating symptoms of anemia, improving ICU throughput, and decreasing blood waste. Providers in different roles approached transfusion decisions differently, with the largest differences noted between nurses and subspecialists as compared with other ICU providers. While ICU attendings most often made the decision to transfuse, all providers influenced the decision-making.Implementation of transfusion guidelines requires multi-professional approaches that emphasize the known risks of transfusion, its limited benefits, and highlight evidence around the safety and benefit of restrictive approaches.
View details for DOI 10.1111/trf.17364
View details for PubMedID 37078686
- Analysis of FRAME data (A-FRAME): An analytic approach to assess the impact of adaptations on health services interventions and evaluations LEARNING HEALTH SYSTEMS 2023
"Never waste a good crisis": A qualitative study of the impact of COVID-19 on palliative care in seven hospitals using the Dynamic Sustainability Framework.
BACKGROUND: The COVID-19 pandemic led to rapid adaptations among palliative care services, but it is unclear how these adaptations vary in relation to their unique organizational contexts.AIM: Understand how the pandemic impacted the implementation of new and existing palliative care programs in diverse hospital systems using the Dynamic Sustainability Framework.DESIGN: Twelve in-depth interviews with 15 key informants representing palliative care programs from seven hospital systems between April and June 2020.SETTING: Public, not-for-profit private, community, and academic teaching hospitals in the San Francisco Bay Area with existing palliative care programs that were expanding services to new clinical areas (e.g. new outpatient clinic or community-based care).RESULTS: Six themes characterized how palliative care programs were impacted and adapted during the early stages of the COVID-19 pandemic: palliative care involvement in preparing for surge, increased emphasis on advance care planning, advocating for visitors for dying patients, providing emotional support to clinicians, adopting virtual approaches to care, and gaps in chaplaincy support. There was variation in how new and existing programs were able to adapt to early pandemic stresses; systems with new outpatient programs struggled to utilize their programs effectively during the crisis onset.CONCLUSIONS: The fit between palliative care programs and practice setting was critical to program resiliency during the early stages of the pandemic. Reconceptualizing the Dynamic Sustainability Framework to reflect a bidirectional relationship between ecological system, practice setting, and intervention levels might better guide implementers and researchers in understanding how ecological/macro changes can influence interventions on the ground.
View details for DOI 10.1177/02692163221123966
View details for PubMedID 36305617
Implementation and Effectiveness of a Learning Collaborative to Improve Palliative Care for Seriously Ill Hemodialysis Patients.
Clinical journal of the American Society of Nephrology : CJASN
BACKGROUND AND OBJECTIVES: Limited implementation of palliative care practices in hemodialysis may contribute to end-of-life care that is intensive and not patient centered. We determined whether a learning collaborative for hemodialysis center providers improved delivery of palliative care best practices.DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Ten US hemodialysis centers participated in a pre-post study targeting seriously ill patients between April 2019 and September 2020. Three practices were prioritized: screening for serious illness, goals of care discussions, and use of a palliative dialysis care pathway. The collaborative educational bundle consisted of learning sessions, communication skills training, and implementation support. The primary outcome was change in the probability of complete advance care planning documentation among seriously ill patients. Health care utilization was a secondary outcome, and implementation outcomes of acceptability, adoption, feasibility, and penetration were assessed using mixed methods.RESULTS: One center dropped out due to the coronavirus disease 2019 pandemic. Among the remaining nine centers, 20% (273 of 1395) of patients were identified as seriously ill preimplementation, and 16% (203 of 1254) were identified as seriously ill postimplementation. From the preimplementation to postimplementation period, the adjusted probability of complete advance care planning documentation among seriously ill patients increased by 34.5 percentage points (95% confidence interval, 4.4 to 68.5). There was no difference in mortality or in utilization of palliative hemodialysis, hospice referral, or hemodialysis discontinuation. Screening for serious illness was widely adopted, and goals of care discussions were adopted with incomplete integration. There was limited adoption of a palliative dialysis care pathway.CONCLUSIONS: A learning collaborative for hemodialysis centers spanning the coronavirus disease 2019 pandemic was associated with adoption of serious illness screening and goals of care discussions as well as improved documentation of advance care planning for seriously ill patients.CLINICAL TRIAL REGISTRY NAME AND REGISTRATION NUMBER: Pathways Project: Kidney Supportive Care, NCT04125537.
View details for DOI 10.2215/CJN.00090122
View details for PubMedID 36104084
A 360 degree mixed-methods evaluation of a specialized COVID-19 outpatient clinic and remote patient monitoring program.
BMC primary care
2022; 23 (1): 151
BACKGROUND: Our goals are to quantify the impact on acute care utilization of a specialized COVID-19 clinic with an integrated remote patient monitoring program in an academic medical center and further examine these data with stakeholder perceptions of clinic effectiveness and acceptability.METHODS: A retrospective cohort was drawn from enrolled and unenrolled ambulatory patients who tested positive in May through September 2020 matched on age, presence of comorbidities and other factors. Qualitative semi-structured interviews with patients, frontline clinician, and administrators were analyzed in an inductive-deductive approach to identify key themes.RESULTS: Enrolled patients were more likely to be hospitalized than unenrolled patients (N=11/137 in enrolled vs 2/126 unenrolled, p=.02), reflecting a higher admittance rate following emergency department (ED) events among the enrolled vs unenrolled, though this was not a significant difference (46% vs 25%, respectively, p=.32). Thirty-eight qualitative interviews conducted June to October 2020 revealed broad stakeholder belief in the clinic's support of appropriate care escalation. Contrary to beliefs the clinic reduced inappropriate care utilization, no difference was seen between enrolled and unenrolled patients who presented to the ED and were not admitted (N=10/137 in enrolled vs 8/126 unenrolled, p=.76). Administrators and providers described the clinic's integral role in allowing health services to resume in other areas of the health system following an initial lockdown.CONCLUSIONS: Acute care utilization and multi-stakeholder interviews suggest heightened outpatient observation through a specialized COVID-19 clinic and remote patient monitoring program may have contributed to an increase in appropriate acute care utilization. The clinic's role securing safe reopening of health services systemwide was endorsed as a primary, if unmeasured, benefit.
View details for DOI 10.1186/s12875-022-01734-7
View details for PubMedID 35698064
Technology-Enabled and Artificial Intelligence Support for Pre-Visit Planning in Ambulatory Care: Findings From an Environmental Scan.
Annals of family medicine
2021; 19 (5): 419-426
PURPOSE: Pre-visit planning (PVP) is believed to improve effectiveness, efficiency, and experience of care, yet numerous implementation barriers exist. There are opportunities for technology-enabled and artificial intelligence (AI) support to augment existing human-driven PVP processes-from appointment reminders and pre-visit questionnaires to pre-visit order sets and care gap closures. This study aimed to explore the current state of PVP, barriers to implementation, evidence of impact, and potential use of non-AI and AI tools to support PVP.METHODS: We used an environmental scan approach involving: (1) literature review; (2) key informant interviews with PVP experts in ambulatory care; and (3) a search of the public domain for technology-enabled and AI solutions that support PVP. We then synthesized the findings using a qualitative matrix analysis.RESULTS: We found 26 unique PVP implementations in the literature and conducted 16 key informant interviews. Demonstration of impact is typically limited to process outcomes, with improved patient outcomes remaining elusive. Our key informants reported that many PVP barriers are human effort-related and see potential for non-AI and AI technologies to support certain aspects of PVP. We identified 8 examples of commercially available technology-enabled tools that support PVP, some with AI capabilities; however, few of these have been independently evaluated.CONCLUSIONS: As health systems transition toward value-based payment models in a world where the coronavirus disease 2019 pandemic has shifted patient care into the virtual space, PVP activities-driven by humans and supported by technology-may become more important and powerful and should be rigorously evaluated.
View details for DOI 10.1370/afm.2716
View details for PubMedID 34546948
Predicting and Responding to Clinical Deterioration in Hospitalized Patients by Using Artificial Intelligence: Protocol for a Mixed Methods, Stepped Wedge Study.
JMIR research protocols
2021; 10 (7): e27532
BACKGROUND: The early identification of clinical deterioration in patients in hospital units can decrease mortality rates and improve other patient outcomes; yet, this remains a challenge in busy hospital settings. Artificial intelligence (AI), in the form of predictive models, is increasingly being explored for its potential to assist clinicians in predicting clinical deterioration.OBJECTIVE: Using the Systems Engineering Initiative for Patient Safety (SEIPS) 2.0 model, this study aims to assess whether an AI-enabled work system improves clinical outcomes, describe how the clinical deterioration index (CDI) predictive model and associated work processes are implemented, and define the emergent properties of the AI-enabled work system that mediate the observed clinical outcomes.METHODS: This study will use a mixed methods approach that is informed by the SEIPS 2.0 model to assess both processes and outcomes and focus on how physician-nurse clinical teams are affected by the presence of AI. The intervention will be implemented in hospital medicine units based on a modified stepped wedge design featuring three stages over 11 months-stage 0 represents a baseline period 10 months before the implementation of the intervention; stage 1 introduces the CDI predictions to physicians only and triggers a physician-driven workflow; and stage 2 introduces the CDI predictions to the multidisciplinary team, which includes physicians and nurses, and triggers a nurse-driven workflow. Quantitative data will be collected from the electronic health record for the clinical processes and outcomes. Interviews will be conducted with members of the multidisciplinary team to understand how the intervention changes the existing work system and processes. The SEIPS 2.0 model will provide an analytic framework for a mixed methods analysis.RESULTS: A pilot period for the study began in December 2020, and the results are expected in mid-2022.CONCLUSIONS: This protocol paper proposes an approach to evaluation that recognizes the importance of assessing both processes and outcomes to understand how a multifaceted AI-enabled intervention affects the complex team-based work of identifying and managing clinical deterioration.INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/27532.
View details for DOI 10.2196/27532
View details for PubMedID 34255728
Implementation of clinical practice changes in the PICU: a qualitative study using and refining the iPARIHS framework.
Implementation science : IS
2021; 16 (1): 15
Like in many settings, implementation of evidence-based practices often fall short in pediatric intensive care units (PICU). Very few prior studies have applied implementation science frameworks to understand how best to improve practices in this unique environment. We used the relatively new integrated Promoting Action on Research Implementation in Health Services (iPARIHS) framework to assess practice improvement in the PICU and to explore the utility of the framework itself for that purpose.We used the iPARIHS framework to guide development of a semi-structured interview tool to examine barriers, facilitators, and the process of change in the PICU. A framework approach to qualitative analysis, developed around iPARIHS constructs and subconstructs, helped identify patterns and themes in provider interviews. We assessed the utility of iPARIHS to inform PICU practice change.Fifty multi-professional providers working in 8 U.S. PICUs completed interviews. iPARIHS constructs shaped the development of a process model for change that consisted of phases that include planning, a decision to adopt change, implementation and facilitation, and sustainability; the PICU environment shaped each phase. Large, complex multi-professional teams, and high-stakes work at near-capacity impaired receptivity to change. While the unit leaders made decisions to pursue change, providers' willingness to accept change was based on the evidence for the change, and provider's experiences, beliefs, and capacity to integrate change into a demanding workflow. Limited analytic structures and resources frustrated attempts to monitor changes' impacts. Variable provider engagement, time allocated to work on changes, and limited collaboration impacted facilitation. iPARIHS constructs were useful in exploring implementation; however, we identified inter-relation of subconstructs, unique concepts not captured by the framework, and a need for subconstructs to further describe facilitation.The PICU environment significantly shaped the implementation. The described process model for implementation may be useful to guide efforts to integrate changes and select implementation strategies. iPARIHS was adequate to identify barriers and facilitators of change; however, further elaboration of subconstructs for facilitation would be helpful to operationalize the framework.Not applicable, as no health care intervention was performed.
View details for DOI 10.1186/s13012-021-01080-9
View details for PubMedID 33509190
Factors Influencing Implementation of Blood Transfusion Recommendations in Pediatric Critical Care Units.
Frontiers in pediatrics
1800; 9: 800461
Purpose: Risks of red blood cell transfusion may outweigh benefits for many patients in Pediatric Intensive Care Units (PICUs). The Transfusion and Anemia eXpertise Initiative (TAXI) recommendations seek to limit unnecessary and potentially harmful transfusions, but use has been variable. We sought to identify barriers and facilitators to using the TAXI recommendations to inform implementation efforts. Materials and Methods: The integrated Promoting Action on Research Implementation in Health Services (iPARIHS) framework guided semi-structured interviews conducted in 8 U.S. ICUs; 50 providers in multiple ICU roles completed interviews. Adapted Framework analysis, a form of content analysis, used the iPARIHS innovation, recipient, context and facilitation constructs and subconstructs to categorize data and identify patterns as well as unique informative statements. Results: Providers perceived that the TAXI recommendations would reduce transfusion rates and practice variability, but adoption faced challenges posed by attitudes around transfusion and care in busy and complex units. Development of widespread buy-in and inclusion in implementation, integration into workflow, designating committed champions, and monitoring outcomes data were expected to enhance implementation. Conclusions: Targeted activities to create buy-in, educate, and plan for use are necessary for TAXI implementation. Recognition of contextual challenges posed by the PICU environment and an approach that adjusts for barriers may optimize adoption.
View details for DOI 10.3389/fped.2021.800461
View details for PubMedID 34976903
"Along for the Ride": A Qualitative Study Exploring Patient and Caregiver Perceptions of Decision Making in Cancer Care.
MDM policy & practice
2020; 5 (1): 2381468320933576
Background. Shared decision making is a cornerstone of an informed consent process for cancer treatment, yet there are often many physician and patient-related barriers to participation in the process. Decisions in cancer care are often perceived as relating to a discrete, treatment decision event, yet there is evidence that decisions are longitudinal in nature and reflect a multifactorial experience. Objective. To explore patient and caregiver perceptions of the choices and decision-making opportunities within cancer care. Design. Qualitative in-depth interviews with 37 cancer patients and 7 caregivers carried out as part of an evaluation of a cancer center's effort to improve patient experience. Results. Participants described decision making related to four distinct phases in complex cancer care, with physicians leading, and often limiting, decisions related to disease assessment and treatment options and access, and patients leading decisions related to physician selection. Though physicians led many decisions, patients had a moderating influence on treatment, such that if patients did not like options presented, they would reconsider their options and sometimes switch physicians. Patients had various strategies for dealing with uncertainty when faced with decisions, such as seeking additional information to make an informed choice or making a conscious choice to defer decision making to the physician. Limitations. Patients were sampled from one academic cancer center that serves a predominantly Caucasian, Asian, and Hispanic/Latino population and received complex treatment. Conclusion. Because of the complexity of cancer treatment, many patients felt as though they were a "passenger" in decision making about care and did not lead many of the decisions, though many patients trusted their doctors to make the best decisions and were comforted by their expertise.
View details for DOI 10.1177/2381468320933576
View details for PubMedID 32587894
View details for PubMedCentralID PMC7294494
Negotiating Lay and Clinical Issues: Implementing a Lay Navigation Program in Cancer Care.
Journal of oncology practice
PURPOSE: Patients with cancer face daunting coordination problems at a vulnerable time. Lay navigation programs offer 1 approach to address these problems, but how to best implement these programs presents challenges. We sought to describe those implementation challenges at 1 academic cancer center to inform future efforts.METHODS: We performed a mixed methods study using standard implementation outcomes 1 year after program initiation. Quantitative data from the electronic medical record and qualitative data from in-depth interviews, focus groups, and ethnographic observations were included in analyses. The study took place at a National Cancer Institute-designated comprehensive cancer center across 12 tumor-specific clinics.RESULTS: Supportive care concerns, scheduling, and clinical-related issues were the most frequent issues navigators encountered. Effective navigation required continuous, time-consuming, invisible work, including building and maintaining a broad knowledge base of resources and health system processes, as well as cultivating relationships with diverse and changing clinical teams. The acceptability and appropriateness of lay navigator activities were mixed among clinic and social work staff, related to negotiating lines between clinical and nonclinical care.CONCLUSION: After 1 year of implementation, lay navigators still found it difficult to interpret and prioritize complex patient needs in a way that all clinical staff found appropriate. Negotiating these issues has made it difficult to develop the strong relationships with clinical teams that are needed for an integrated approach to patient care. To successfully coordinate patient care, it seems that lay navigation programs should be integrated with clinical teams to provide more seamless patient care.
View details for DOI 10.1200/JOP.19.00339
View details for PubMedID 31693450
Effectiveness of a Lay Navigation Program in an Academic Cancer Center.
Journal of oncology practice
A navigation program with lay navigators that targets patients with cancer who are receiving multiple treatment modalities was launched with the goal of improving care coordination.Pseudo-randomization and mixed methods were used to evaluate the program: patients with even-numbered medical records were assigned to navigation help, and patients with odd-numbered medical records made up the control group. Eligible patients were those scheduled to receive at least two treatment modalities. Intent-to-treat, as-treated, and high-user cohorts with propensity matched controls were used to assess the outcomes: patient experience, emergency room (ER) use, and unplanned hospitalizations. In-depth patient interviews explored how and why patients interacted with the navigator program and overall patient experience.Marginally lower incidence rate ratios (IRRs) for both ER visits (IRR, 1.17; 95% CI, 1.00 to 1.36) and unplanned hospitalizations (IRR, 1.18; 95% CI, 0.97 to 1.43) occurred in as-treated patients who used navigation help and who lived within 50 miles of Stanford Hospital compared with their matched controls; other cohort analyses had similar results. Survey scores for patients who received help with navigation did not differ significantly from those for corresponding controls in any of the analytic cohorts. Patient interviews suggested that the navigation program had low visibility among patients and that lay navigators drove use of the program. Patient-reported positive experiences included getting help with complex scheduling, alleviating anxiousness through access to information and educational resources, and getting help with activities outside traditional health care; negative experiences stemmed from having expectations that were not met.Marginally lower rates of ER visits and unplanned hospitalizations for a small subset of patients, low penetration of the navigation program, and mixed comments from patient interviews suggest that a navigation program with a broad scope that targets a large population is not effective. Modifying the program to have a narrower scope of practice may help better target anxious or high-risk patients.
View details for DOI 10.1200/JOP.19.00337
View details for PubMedID 31647691
Conceptualizing “project resiliency”: A qualitative study exploring the implementation of coordinated care with a context of system change
Journal of Integrated Care
2019; 27 (2): 163-172
View details for DOI 10.1108/JICA-07-2018-0049
Palliative Care Disincentives in CKD: Changing Policy to Improve CKD Care
AMERICAN JOURNAL OF KIDNEY DISEASES
2018; 71 (6): 866–73
The dominant health delivery model for advanced chronic kidney disease (CKD) and end-stage renal disease (ESRD) in the United States, which focuses on provision of dialysis, is ill-equipped to address many of the needs of seriously ill patients. Although palliative care may address some of these gaps in care, its integration into advanced CKD care has been suboptimal due to several health system barriers. These barriers include uneven access to specialty palliative care services, underdeveloped models of care for seriously ill patients with advanced CKD, and misaligned policy incentives. This article reviews policies that affect the delivery of palliative care for this population, discusses reforms that could address disincentives to palliative care, identifies quality measurement issues for palliative care for individuals with advanced CKD and ESRD, and considers potential pitfalls in the implementation of new models of integrated palliative care. Reforming health care delivery in ways that remove policy disincentives to palliative care for patients with advanced CKD and ESRD will fill a critical gap in care.
View details for PubMedID 29510920
View details for PubMedCentralID PMC5970958
Optimum hospice at home services for end-of-life care: protocol of a mixed-methods study employing realist evaluation
2018; 8 (5): e021192
Hospice at home (HAH) services aim to enable patients to be cared for and die in their place of choice, if that is at home, and to achieve a 'good death'. There is a considerable range of HAH services operating in England. The published evidence focuses on evaluations of individual services which vary considerably, and there is a lack of consistency in terms of the outcome measures reported. The evidence, therefore, does not provide generalisable information, so the question 'What are the features of hospice at home service models that work, for whom, and under what circumstances?' remains unanswered. The study aims to answer this question.This is a mixed-methods study in three phases informed by realist evaluation methodology. All HAH services in England will be invited to participate in a telephone survey to enable the development of a typology of services. In the second phase, case study sites representing the different service types will collect patient data and recruit carers, service managers and commissioners to gather quantitative and qualitative data about service provision and outcomes. A third phase will synthesise and refine the results through consensus workshops.The first survey phase has university ethics approval and the second phase, Integrated Research Application System (IRAS) and Health Research Authority (HRA) approval (IRAS ID:205986, REC:17/LO/0880); the third phase does not require ethics approval. Dissemination will be facilitated by project coapplicants with established connections to national policy-making forums, in addition to publications, conference presentations and reports targeted to service providers and commissioners.
View details for DOI 10.1136/bmjopen-2017-021192
View details for Web of Science ID 000435567200150
View details for PubMedID 29769257
View details for PubMedCentralID PMC5961564
Adaptation of the Ambulatory and Home Care Record for collecting palliative care service utilization data from family carers in the UK: a pilot study
Pilot and Feasibility Studies
View details for DOI 10.1186/s40814-018-0332-2
Impact of a hospice rapid response service on preferred place of death, and costs
BMC PALLIATIVE CARE
Many people with a terminal illness would prefer to die at home. A new palliative rapid response service (RRS) provided by a large hospice provider in South East England was evaluated (2010) to provide evidence of impact on achieving preferred place of death and costs. The RRS was delivered by a team of trained health care assistants and available 24/7. The purpose of this study was to (i) compare the characteristics of RRS users and non-users, (ii) explore differences in the proportions of users and non-users dying in the place of their choice, (iii) monitor the whole system service utilisation of users and non-users, and compare costs.All hospice patients who died with a preferred place of death recorded during an 18 month period were included. Data (demographic, preferences for place of death) were obtained from hospice records. Dying in preferred place was modelled using stepwise logistic regression analysis. Service use data (period between referral to hospice and death) were obtained from general practitioners, community providers, hospitals, social services, hospice, and costs calculated using validated national tariffs.Of 688 patients referred to the hospice when the RRS was operational, 247 (35.9%) used it. Higher proportions of RRS users than non-users lived in their own homes with a co-resident carer (40.3% vs. 23.7%); more non-users lived alone or in residential care (58.8% vs. 76.3%). Chances of dying in the preferred place were enhanced 2.1 times by being a RRS user, compared to a non-user, and 1.5 times by having a co-resident carer, compared to living at home alone or in a care home. Total service costs did not differ between users and non-users, except when referred to hospice very close to death (users had higher costs).Use of the RRS was associated with increased likelihood of dying in the preferred place. The RRS is cost neutral.Current controlled trials ISRCTN32119670, 22 June 2012.
View details for DOI 10.1186/s12904-015-0065-4
View details for Web of Science ID 000367137100001
View details for PubMedID 26701763
Bereaved carers' accounts of the end of life and the role of care providers in a "good death': A qualitative study
2015; 29 (9): 834-841
The way that people die is particularly important to those who are left behind and this memory is not limited to the moment of death, but encompasses the entire end-of-life phase. While a number of attributes for a 'good death' have been identified, less is known about how care providers feature within these conceptualisations.The aim of this article is to describe the end-of-life experience from the point of view of bereaved family carers with particular reference to the role that care providers play in shaping this experience.Qualitative interviews carried out as part of a study to evaluate a new rapid response hospice at home service. An interpretive thematic analysis using the Framework approach was used to examine how family carers judge a 'good death' and how care providers feature in the attributes of a 'good death'.A total of 44 interviews with bereaved family carers from a hospice population in the South East of England.Six themes were identified as attributes of a good death in which care providers had a key role: social engagement and connection to identity, care provider characteristics and actions, carer's confidence and ability to care, preparation and awareness of death, presentation of the patient at death and support after death for protected grieving.Care providers played a much wider role in social aspects of care at the end of life than previously considered.
View details for DOI 10.1177/0269216315584865
View details for Web of Science ID 000361491800007
View details for PubMedID 25944545
A quasi-experimental controlled evaluation of the impact of a hospice rapid response community service for end-of-life care on achievement of preferred place of death
2015; 29 (9): 817-825
Rapid response services operating 24 h a day have been advocated in UK health policy to support dying patients at home, though there is limited evidence of their effectiveness.To assess the impact of a rapid response hospice at home service (intervention) on people dying in their preferred place, and carer quality of life, compared to usual care (control).Quasi-experimental multi-centred controlled evaluation. Patient data were collected from hospice records; carers completed postal questionnaires to report quality of life, anxiety and depression.Community served by one hospice (three contiguous sites) in South East England; 953 patients who died with a preferred place of death recorded and 64 carers who completed questionnaires.There was no significant difference between control and intervention groups in proportions achieving preferred place of death (61.9% vs 63.0% (odds ratio: 0.949; 95% confidence interval: 0.788-1.142)). People living at home alone were less likely to die where they wanted (0.541; 95% confidence interval: 0.438-0.667). Carers in the intervention group reported worse mental health component summary scores (short form-12, p = 0.03) than those in the control group; there were no differences in other carer outcomes.The addition of a rapid response hospice at home service did not have a significant impact on helping patients to die where they wanted in an area already well served by community palliative care. Recording preferences, and changes over time, is difficult and presented challenges for this study.
View details for DOI 10.1177/0269216315582124
View details for Web of Science ID 000361491800005
View details for PubMedID 25881623
Setting up a new evidence-based hospice-at-home service in England.
International journal of palliative nursing
2013; 19 (7): 355-359
A hospice service in south east England determined to develop a new hospice-at-home service to enable greater patient choice and facilitate patients dying at home, which is often a patient's preferred place. As a first step, a literature review was commissioned to establish the evidence base to inform the design of the new service. A range of research had been reported on hospice-at-home services, but the service configurations evaluated in these studies and the context in which they operated had not been described in detail. This paper briefly summarises the results of the literature review and then describes the new service that was established, including the setting and context. Experiences with the service in terms of activity, acceptability, and problems are described. The aim is to assist providers and commissioners seeking to establish or develop similar services and to help them predict the likely impact of such services.
View details for PubMedID 24273813
Evaluation of a hospice rapid response community service: a controlled evaluation
BMC PALLIATIVE CARE
While most people faced with a terminal illness would prefer to die at home, less than a third in England are enabled to do so with many dying in National Health Service hospitals. Patients are more likely to die at home if their carers receive professional support. Hospice rapid response teams, which provide specialist palliative care at home on a 24/7 on-call basis, are proposed as an effective way to help terminally ill patients die in their preferred place, usually at home. However, the effectiveness of rapid response teams has not been rigorously evaluated in terms of patient, carer and cost outcomes.The study is a pragmatic quasi-experimental controlled trial. The primary outcome for the quantitative evaluation for patients is dying in their preferred place of death. Carers' quality of life will be evaluated using postal questionnaires sent at patient intake to the hospice service and eight months later. Carers' perceptions of care received and the patient's death will be assessed in one to one interviews at 6 to 8 months post bereavement. Service utilisation costs including the rapid response intervention will be compared to those of usual care.The study will contribute to the development of the evidence base on outcomes for patients and carers and costs of hospice rapid response teams operating in the community.Current controlled trials ISRCTN32119670.
View details for DOI 10.1186/1472-684X-11-11
View details for Web of Science ID 000313902400001
View details for PubMedID 22846107
Preferences for end of life: views of hospice patients, family carers, and community nurse specialists.
International journal of palliative nursing
2011; 17 (5): 251-255
An exploratory qualitative study was undertaken with the aim of identifying issues around discussing and recording preferences on place of death from the perspective of hospice patients, carers, and hospice community nurses. A purposive sample was selected from three hospices in the south east of England of six community nurse specialists (CNSs), five patients, five carers, and five bereaved carers. The patients and carers said it was important to them to discuss their preferences, but they acknowledged that discussing dying was difficult. The CNSs stated that there were several barriers that inhibited end-of-life discussions and that discussing preferences was not always a primary goal of care planning. It was felt among the service users, particularly the bereaved carers, that having more knowledge about what to expect of the dying process, knowing their relative's wishes, and understanding the role of hospice and palliative care could improve the experience of events leading up to death.
View details for PubMedID 21647080
A retrospective analysis of preferred and actual place of death for hospice patients.
International journal of palliative nursing
2010; 16 (9): 424-?
The purpose of this study was to explore recording rates of preferences, and the preferred and actual place of death among hospice patients. Data was collected retrospectively from a group of three hospices over a 6-month period. Of 298 patients, 174 patients (58.4%) had no expressed preference for place of death. The congruence of preferred and actual place of death was: home 52.5%; hospice 86.2%; hospital 100%; and care home 50%. The overall congruence was 61.7% and kappa value was 0.38 (0.23-0.52, 95% confidence interval). The low rate of expressed preferences suggests that congruence of preferred and actual place of death was a suitable outcome measurement for less than half of hospice patients. A wider range of patient-focused indicators for identifying the quality of end-of life services is needed as preferred place of death may not be the only suitable indicator for all patients.
View details for PubMedID 20871496
Supported further education provision for people with long-term mental health needs: Findings from a survey of further education colleges and primary care trusts across the south east of England
PERSPECTIVES IN PUBLIC HEALTH
2010; 130 (2): 78-85
Government policy has highlighted the need for inclusive education for people with long-term mental health needs. As a starting point, the aim of this study was to assess the extent to which further education (FE) colleges in the south east of England provide supported education for people with mental health needs, and the extent to which these organizations collaborate with local NHS primary care trusts (PCTs). Also, to assess the potential numbers of people who might benefit from fully inclusive educational provision needs assessment, together with the potential healthcare cost savings.A survey was conducted of 33 multi-faculty FE colleges and 49 PCTs via structured telephone interviews with nominated representatives, in order to collect quantitative and qualitative data of the provision of supported education provision for people with mental health needs. The FE survey enquired whether they had provision for people with mental health needs, and if so, the details. The PCT survey gathered data on their caseload of standard and enhanced clients for the population covered, and the extent to which they were aware of the benefits of learning on mental health.Only 15 FE colleges (45%) had some form of provision for students with long-term mental health needs, and only six PCTs (12%) provided an educational link co-ordinator. FE colleges with existing provision averaged 70 students per college, against an attainable potential target of 130 students per college. Encouragingly, cohorts of students with mental health needs were reported to have levels of 'retention', 'achievement' and 'success' rates that were comparable with students from the general population on mainstream courses--e.g. expected rates of around 85% retention, 75% achievement (of those retained), 65% success (overall from enrolled to achieving), with some 5% progressing to university and 12% into employment. On present levels of FE recruitment, there is a potential net saving to the taxpayer of 13 million sterling pounds in mental healthcare costs (around 50%) and if recruitment increased to projected levels, then the potential net saving to the taxpayer would be 26 million sterling pounds. The substantial estimated savings to the health budget not only shows that supported education provision in FE is effective in promoting mental health, it also indicates the high level of its cost-effectiveness.This research has implications for budget holders, health promotion staff and mental health teams working within a social model of health, and the collaborative use of resources to assist people recovering from or managing mental health difficulties in moving forward in their lives.
View details for DOI 10.1177/1757913909360454
View details for Web of Science ID 000275757000020
View details for PubMedID 20455487