Assessing the Needs of Adolescents and Young Adults Receiving Cancer Treatment: A Mixed Methods Study.
Journal of adolescent and young adult oncology
Purpose: This study was designed to assess the most salient health care needs of adolescents and young adults (AYAs) who undergo cancer treatment. Understanding their age-related needs helps providers offer appropriate support when support is vital: as they accept diagnosis and undergo treatment. Methods: A mixed methods design was used to obtain quantitative and qualitative data on the overall needs of AYA cancer patients. Participants, aged 16-29, who enrolled early in their cancer treatment, completed the Stanford Adolescent and Young Adult Cancer (SAYAC) Program survey and a subsequent one-on-one semistructured interview. Results: The quantitative and qualitative data were analyzed separately. The data revealed that AYAs adjusted and adapted to their cancer diagnosis to meet their health care needs. Three themes emerged from the data: acquisition of knowledge and experience, participation in decision-making and self-management behaviors, and gaining perspectives on life inside and outside of the hospital. The quantitative data revealed that the participants agreed or strongly agreed on the importance of being involved in the decision-making process, incorporating hopes and dreams into their treatment, and feeling supported by their family. Conclusion: Understanding the needs of AYAs who undergo cancer treatment is vital to their overall well-being. Using different data collection methods, including interviews, can clarify AYA needs and lead to improved individualized care.
View details for DOI 10.1089/jayao.2021.0195
View details for PubMedID 35575715
Smartphone-Based Ecological Momentary Assessment to Study "Scanxiety" among Adolescent and Young Adult Survivors of Childhood Cancer: A Feasibility Study.
OBJECTIVE: Scan-related anxiety ("scanxiety") refers to the fear, stress, and anxiety in anticipation of tests and scans in follow-up cancer care. This study assessed the feasibility of Ecological Momentary Assessment (EMA) for real-world, real-time capture of scanxiety using patients' personal smartphone.METHODS: Adolescent and Young Adult (AYA) survivors of childhood cancer were prompted to complete EMA surveys on a smartphone app three times per day for 11 days (33 surveys total) around their routine surveillance scans. Participants provided structured feedback on the EMA protocol.RESULTS: Thirty out of 46 contacted survivors (65%) enrolled, exceeding the preregistered feasibility cutoff of 55%. The survey completion rate (83%) greatly exceeded the preregistered feasibility cutoff of 65%. Participants generally found the smartphone app easy and enjoyable to use and reported low levels of distress from answering surveys. Participants reported significantly more daily fear of cancer recurrence (FCR) and negative affect in the days before compared to the days after surveillance scans, aligning with the expected trajectory of scanxiety. Participants who reported greater FCR and scanxiety using comprehensive measures at baseline also reported significantly more daily FCR around their surveillance scans, indicating validity of EMA items. Bodily threat monitoring was prospectively and concurrently associated with daily FCR, thus warranting further investigation as a risk factor for scanxiety.CONCLUSIONS: Findings indicate the feasibility, acceptability, and validity of EMA as a research tool to capture the dynamics and potential risk factors for scanxiety. This article is protected by copyright. All rights reserved.
View details for DOI 10.1002/pon.5935
View details for PubMedID 35411626
Pain and Intolerance of Uncertainty among Adolescent and Young Adult Cancer Survivors
CHURCHILL LIVINGSTONE. 2021: 611
View details for Web of Science ID 000661623200140
Symptom appraisal in uncertainty: a theory-driven thematic analysis with survivors of childhood cancer.
Psychology & health
OBJECTIVE: Somatic symptoms capture attention, demand interpretation, and promote health behaviors. Symptom appraisal is particularly impactful within uncertain health contexts such as cancer survivorship. Yet, little is known about how individuals make sense of somatic symptoms within uncertain health contexts, nor how this process guides health behaviors.DESIGN: 25 adolescent and young adult survivors of childhood cancer completed semi-structured interviews regarding how they appraise and respond to changing somatic sensations within the uncertain context of survivorship.MAIN OUTCOME MEASURES: Interviews were transcribed verbatim and subjected to a hybrid deductive-inductive thematic analysis, guided by the Cancer Threat Interpretation model.RESULTS: We constructed three themes. Symptoms as signals of bodily threat (theme 1) captured that participants described commonly interpreting and worrying about everyday sensations as indicating cancer recurrence or new illness. Playing detective with bodily signals (theme 2) captured participants' felt need to employ cognitive and behavioral strategies to determine whether somatic sensations indicated a credible health threat. These two themes are qualified by the final theme, Living with symptom-related uncertainty (theme 3), which captured participants' recognition that post-cancer symptoms are wily and influenced by psychological factors such as anxiety.CONCLUSIONS: These data highlight that making sense of everday somatic sensations can be particularly challenging following an experience of cancer. There is a need for novel symptom management approaches that target how somatic sensations are appraised and responded to as signals of bodily threat.
View details for DOI 10.1080/08870446.2020.1836180
View details for PubMedID 33073604
Male and Female Sexual Dysfunction in Pediatric Cancer Survivors.
The journal of sexual medicine
BACKGROUND: Pediatric cancer survivors suffer indirect long-term effects of their disease; however, there is a paucity of data regarding the effect of pediatric cancer survivorship on sexual function.AIM: To assess the prevalence and risk factors associated with sexual dysfunction among pediatric cancer survivors.METHODS: Pediatric cancer survivors were recruited to complete an online survey using the Female Sexual Function Index (FSFI) or the International Index of Erectile Function (IIEF-5), both validated questionnaires to assess female sexual dysfunction (FSD) and erectile dysfunction (ED). Patient demographics, oncologic history, prior treatment, and sexual habits were also queried. Logistic regression was used to evaluate risk factors for sexual dysfunction, and Mann-Whitney U test was used to identify factors associated with individual domains of the FSFI.OUTCOMES: The main outcome measures were FSFI and IIEF-5 score, which are used to diagnose FSD (FSFI<26.55) and ED (IIEF-5<22).RESULTS: A total of 21 (72.4%) female respondents and 20 (71.4%) male respondents were sexually active and completed the survey and FSFI or IIEF-5 questionnaire, respectively. Mean (±SD) age was 23.7 (4.1) years, andaverage age at diagnosis was 9.1 (5.0), with no difference between genders. Overall, 25.0% (5/20) of male and 52.4% (11/21) of female pediatric cancer survivors reported sexual dysfunction (P=.11). Oncologic history and prior treatment were not associated with sexual function. Females who reported difficulty relaxing during intercourse in the last 6months had higher odds of reporting sexual dysfunction (odds ratio: 13.6, 95% confidence interval: 1.2-151.2, P=.03). Subgroup analysis of FSFI domains found that previous radiation therapy was correlated with decreased lubrication and satisfaction during intercourse, whereas previous treatment to the pelvic region significantly reduced satisfaction and increased pain during intercourse.CLINICAL IMPLICATIONS: Female pediatric cancer survivors have higher odds of reporting sexual dysfunction after treatment and should be screened appropriately to provide early intervention and to mitigate risk.STRENGTH & LIMITATIONS: Our study includes validated questionnaires to assess FSD and ED and queries specific characteristics to assess their association with sexual dysfunction. However, the study is limited by sample size and its cross-sectional survey design.CONCLUSIONS: The prevalence of female sexual dysfunction in this cohort is higher than that in the general population of equivalent-aged individuals, and clinicians should be aware of these potential long-term sequelae. Greenberg DR, Khandwala YS, Bhambhvani HP, et-al. Male and Female Sexual Dysfunction in Pediatric Cancer Survivors. J Sex Med;XX:XXX-XXX.
View details for DOI 10.1016/j.jsxm.2020.05.014
View details for PubMedID 32622765
Survivorship for adolescents and young adults
WILEY. 2020: 18–19
View details for Web of Science ID 000514591500033
- Do qualitative interviews cause distress in adolescents and young adults asked to discuss fears of cancer recurrence? Psycho-oncology 2020
- Symptom monitoring and the uncertain threat of disease recurrence: A deductive thematic analysis with adolescent and young adult (AYA) cancer survivors. AMER SOC CLINICAL ONCOLOGY. 2019
Pilot Use of Selected Measures from the Patient-Reported Outcomes Measurement Information System Social and Mental Health Domains with Young Adult Cancer Patients During the Transition to Survivorship Care.
Journal of adolescent and young adult oncology
Social reintegration is an important part of young adult cancer patients' transition to survivorship care. As part of a mixed methods study exploring the social functioning of young adult cancer patients during this transition process, participants (N=13) completed four selected measures from the Patient-Reported Outcomes Measurement Information System (PROMIS) social and mental health domains within 6 months of completion of active treatment and 3 months later. The majority of participants (n=10) had T-scores within normal limits on all measures. Three participants had T-scores in the mild or moderate impairment range across time points. No significant differences were found between groups at Time 1 and Time 2 on any of the four measures.
View details for DOI 10.1089/jayao.2019.0022
View details for PubMedID 31242051
Family-building decision aid and planning tool for young adult women after cancer treatment: protocol for preliminary testing of a web-based decision support intervention in a single-arm pilot study.
2019; 9 (12): e033630
Many young adult female (YA-F) cancer survivors who received gonadotoxic therapy will experience fertility problems. After cancer, having a child will often require assisted reproductive technology (ART), surrogacy or adoption. However, there are significant informational, psychosocial, financial and logistical barriers to pursuing these options. Survivors report high rates of decision uncertainty and distress related to family-building decisions. The aim of this study is to pilot test a web-based decision aid and planning tool for family-building after cancer.The pilot study will use a single-arm trial design to test the feasibility and acceptability (aim 1) and obtain effect size estimates of the decision support intervention (aim 2). The target sample size is 100. Participants will include YA-F survivors (aged 18-45 years) who are post-treatment and have not completed desired family-building. A longitudinal prepost design will be conducted. Participants will complete three psychosocial assessment surveys over a 3-month time period to track decisional conflict (primary outcome) and cognitive, emotional, and behavioural functioning (secondary outcomes). After completing the baseline survey (T1; pre-intervention), participants will have access to the decision aid website. Postintervention surveys will be administered at 1-month (T2) and 3-month (T3) follow-up time points. Feasibility and acceptability metrics will be analysed. Pairwise t-tests will test mean scores of outcome variables from T1 to T2. Effect size estimates (Cohen's d) will be calculated. Google analytics will evaluate user engagement with the website over the study period. Baseline and follow-up data will examine measures of feasibility, acceptability and intervention effect size.This will be the first test of a supportive intervention to guide YA-F cancer survivors in family-building decisions and early planning. Study findings will inform intervention development. Future directions will include a randomised controlled trial to test intervention efficacy over a longer time period.NCT04059237; Pre-results.
View details for DOI 10.1136/bmjopen-2019-033630
View details for PubMedID 31888941
- Shifting Needs and Preferences: Supporting Young Adult Cancer Patients During the Transition from Active Treatment to Survivorship Care JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY 2019; 8 (2): 114–21
Shifting Needs and Preferences: Supporting Young Adult Cancer Patients During the Transition from Active Treatment to Survivorship Care.
Journal of adolescent and young adult oncology
PURPOSE: This study was designed to identify and explore the social support needs and preferences of young adult cancer patients during the transition process from active treatment to survivorship care.METHODS: Semi-structured qualitative interviews were conducted with study participants (n=13, ages 17-25 at the time of cancer diagnosis) within 6 months of completion of active treatment and again 3 months later. Participants completed a sociodemographic questionnaire at the first study visit. Applied thematic analysis was used to identify themes from participant interviews.RESULTS: Six key themes and 12 subthemes emerged regarding participant interactions with their support system ("Being there," "Staying strong," and "Treat me the same") and health care team ("Connection and relationship building" and "Seeking knowledge and engaging in advocacy"), as well as treatment effects ("Uncertainty, Loss, & Changes in Identity" and "Ups & Downs of Physical Symptoms"), coping strategies ("Keep busy" and "Keep a positive vibe"), support resources ("Support needs change over time"), and post-treatment experiences ("Trying new things to cope with losses" and "Managing expectations with realities").CONCLUSION: Study findings suggest that supportive care needs can change during the transition process from active treatment to survivorship care. Young adult life transitions, such as finding employment and making new friendships, are more stressful when complicated by ongoing physical and psychological treatment effects. Social stressors and potential barriers to participation in supportive care services should be discussed openly with patients and caregivers, especially prior to transitions in care.
View details for PubMedID 30312117
Effect of Fitbit and iPad Wearable Technology in Health-Related Quality of Life in Adolescent and Young Adult Cancer Patients.
Journal of adolescent and young adult oncology
PURPOSE: Adolescent and young adult (AYA) patients with cancer face significant challenges with regard to fatigue, reduced physical activity, and social isolation, which may negatively impact quality of life. This study investigated whether the use of digital wearable technology (Fitbits, along with synced iPads) can affect health-related quality of life (HRQOL) in AYA aged patients with cancer.MATERIALS AND METHODS: This was a prospective cohort study that offered Fitbits and iPads to all AYA patients aged 15 to 29 at an academic medical center at the time of cancer diagnosis. Patients completed the Short Form Health Survey developed by RAND (RAND-36) assessing eight dimensions of HRQOL on entering the study and at the time of their 6-month follow-up or the end of treatment, whichever occurred first. At the time of follow-up, patients also completed a questionnaire that assessed user experience, including frequency of wearable device use, enjoyment, challenges, and participation, in online communities.RESULTS: Thirty-three patients participated in the study. Most patients reported enjoying the digital technology and using the devices to track multiple aspects of their health (85%). Most also reported a subjective increase in physical activity (79%). After the intervention, participants demonstrated significant improvements across all eight dimensions of HRQOL measured by the RAND-36 (p<0.00 to 0.01).CONCLUSION: Distributing wearable technology at the time of diagnosis may provide an avenue for improving HRQOL in adolescents and young adults with cancer.
View details for PubMedID 29924668
- Effect of Fitbit and iPad Wearable Technology in Health-Related Quality of Life in Adolescent and Young Adult Cancer Patients JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY 2018; 7 (5): 579–83