Implementing a self-reported immunosuppression adherence questionnaire to screen for non-adherence in routine care of kidney transplant recipients.

INTRODUCTION: Self-reported measures of immunosuppression adherence have been largely examined in research settings. METHODS: In this single center study of 610 kidney transplant recipients, we examined if a voluntary, non-anonymous self-report measure could identify non-adherence in a routine clinic setting and how patients perceived such a measure. Non-adherence was measured using the Basel Assessment of Adherence to Immunosuppressive Medications Scale (BAASIS) and patient perception was elicited using a customized questionnaire. RESULTS: Non-responders to the survey (15%) were younger, more likely to be black, and less likely to have had a pre-emptive transplant. Among complete responders (n = 485), 38% reported non-adherence with non-adherent patients being younger (54 y vs. 60 y; p = .01), less likely to have been on dialysis pre-transplant (59% vs. 68%; p = .04), further out from transplant (37 vs. 22 months; p < .001) and had more rejections in the preceding year (8% vs. 3%; p = .02). Self-reported non-adherence was associated with higher calcineurin inhibitor intra-patient variability (27.4% vs. 24.5%; p = .02), but not with donor-specific antibody detection (27.8% vs. 21.2%, p = .15). Of patients providing feedback (n = 500), the majority of patients felt comfortable reporting adherence (92%), that the survey was relevant to their visit (71%), and that the survey did not interfere with their clinic visit (88%). CONCLUSION: In summary, a self-reported questionnaire during clinic visits identified immunosuppression non-adherence in a significant proportion of patients and was well received by patients. Integrating self-report measures into routine post-transplant care may enable early identification of non-adherence.

Do pre-transplant cultural factors predict health-related quality of life after kidney transplantation?

BACKGROUND: Post-transplant health-related quality of life (HRQOL) is associated with health outcomes for kidney transplant (KT) recipients. However, pretransplant predictors of improvements in post-transplant HRQOL remain incompletely understood. Namely, important pretransplant cultural factors, such as experience of discrimination, perceived racism in healthcare, or mistrust of the healthcare system, have not been examined as potential HRQOL predictors. Also, few have examined predictors of decline in HRQOL post-transplant. METHODS: Using data from a prospective cohort study, we examined HRQOL change pre- to post-transplant, and novel cultural predictors of the change. We measured physical, mental, and kidney-specific HRQOL as outcomes, and used cultural factors as predictors, controlling for demographic, clinical, psychosocial, and transplant knowledge covariates. RESULTS: Among 166 KT recipients (57% male; mean age 50.6 years; 61.4% > high school graduates; 80% non-Hispanic White), we found mental and physical, but not kidney-specific, HRQOL significantly improved post-transplant. No culturally related factors outside of medical mistrust significantly predicted change in any HRQOL outcome. Instead, demographic, knowledge, and clinical factors significantly predicted decline in each HRQOL domain: physical HRQOL-older age, more post-KT complications, higher pre-KT physical HRQOL; mental HRQOL-having less information pre-KT, greater pre-KT mental HRQOL; and, kidney-specific HRQOL-poorer kidney functioning post-KT, lower expectations for physical condition to improve, and higher pre-KT kidney-specific HRQOL. CONCLUSIONS: Instead of cultural factors, predictors of HRQOL decline included demographic, knowledge, and clinical factors. These findings are useful for identifying patient groups that may be at greater risk of poorer post-transplant outcomes, in order to target individualized support to patients.

Predicting Kidney Transplant Evaluation Non-attendance.

Non-attendance to kidney transplant evaluation (KTE) appointments is a barrier to optimal care for those with kidney failure. We examined the medical and socio-cultural factors that predict KTE non-attendance to identify opportunities for integrated medical teams to intervene. Patients scheduled for KTE between May, 2015 and June, 2018 completed an interview before their initial KTE appointment. The interview assessed various social determinants of health, including demographic (e.g., income), medical (e.g. co-morbidities), transplant knowledge, cultural (e.g., medical mistrust), and psychosocial (e.g., social support) factors. We used multiple logistic regression analysis to determine the strongest predictor of KTE non-attendance. Our sample (N = 1119) was 37% female, 76% non-Hispanic White, median age 59.4 years (IQR 49.2-67.5). Of note, 142 (13%) never attended an initial KTE clinic appointment. Being on dialysis predicted higher odds of KTE non-attendance (OR 1.76; p = .02; 64% of KTE attendees on dialysis vs. 77% of non-attendees on dialysis). Transplant and nephrology teams should consider working collaboratively with dialysis units to better coordinate care, (e.g., resources to attend appointment or outreach to emphasize the importance of transplant) adjusting the KTE referral and evaluation process to address access issues (e.g., using tele-health) and encouraging partnership with clinical psychologists to promote quality of life for those on dialysis.

Challenges and Solutions for Monitoring Alcohol Use in Patients With Alcohol-Related Liver Disease: Pilot Study of a Wearable Alcohol Biosensor.

OBJECTIVES: Early alcohol use identification can prevent morbidity/mortality for alcohol-associated liver disease (ALD). Innovative wearable alcohol biosensors (biosensors) that identify alcohol use through perspiration are an emerging technology with potential application for patients with ALD. Our primary aim was to determine biosensor acceptability and feasibility for patients with ALD. We describe participant acceptance and challenges using biosensor technology in a pilot study of biosensors with patients with ALD. DESIGN: Participants had a recent diagnosis or hospitalization for decompensated ALD, had to be drinking within the past 3 months, and had to be followed at our center. Participants wore the biosensor daily for 3 months. Quantitative data using the Technology Acceptance Model 2 (TAM2) measure were collected at intake and study conclusion. The TAM2's 13 items cover four scales: perceived usefulness, ease of use, attitude toward technology, and intention to use on a 7-point Likert scale. Lower scores indicate higher acceptance. Participants were asked open-ended questions about issues wearing the biosensor. RESULTS: Among 27 participants, 60% were women with an average age of 45 (10) years, and 89% were White. TAM2 subscales indicated initially high acceptance (mean scores = 1.2-2.2) and remained high (mean scores = 1.3-2.3) without a statistically significant decline at study conclusion. From open-ended questions, several themes regarding problems with device wear emerged a) uncomfortable or cumbersome to wear, b) problems with biosensor appearance, and c) issues with usability. Challenges to biosensor usage included data being lost when devices were damaged and devices being lost during the study. CONCLUSIONS: Alcohol biosensors seem to be acceptable to ALD participants. However, improving the appearance, comfort, durability, and functionality of biosensor devices is critical to clinical deployment.Trial Registration:Clinicaltrials.gov identifier NCT03533660: Alcohol biosensor monitoring for alcohol liver disease.

Variation in adult living donor liver transplantation in the United States: Identifying opportunities for increased utilization.

In the United States, living donor liver transplantation (LDLT) is limited to transplant centers with specific experience. However, the impact of recipient characteristics on procedure selection (LDLT vs. deceased donor liver transplant [DDLT]) within these centers has not been described. Transplant registry data for centers that performed ≥1 LDLT in 2002-2019 were analyzed using hierarchal regression modeling to quantify the impact of patient and center factors on the adjusted odds ratio (aOR) of LDLT (vs DDLT). Among 73,681 adult recipients, only 4% underwent LDLT, varying from <1% to >60% of total liver transplants. After risk adjustment, the likelihood of receiving an LDLT rose by 73% in recent years (aOR 1.73 for 2014-2019 vs. 2002-2007) but remained lower for older adults, men, racial and ethnic minorities, and obese patients. LDLT was less commonly used in patients with hepatocellular carcinoma or alcoholic cirrhosis, and more frequently in those with hepatitis C and with lower severity of illness (Model for End-Stage Liver Disease (MELD) score < 15). Patients with public insurance, lower educational achievement, and residence in the Northwest and Southeast had decreased access. While some differences in access to LDLT reflect clinical factors, further exploration into disparities in LDLT utilization based on center practice and socioeconomic determinants of health is needed.

Factors enabling transplant program participation in the Scientific Registry of Transplant Recipients (SRTR) Living Donor Collective: A national survey.

BACKGROUND: The Scientific Registry of Transplant Recipients (SRTR) Living Donor Collective (LDC), the first effort to create a lifetime registry for living donor candidates in the United States, requires transplant programs to register donor candidates while the SRTR conducts follow-up. METHODS: To better understand facilitators and barriers to program participation, we conducted a brief electronic survey of U.S. transplant program staff from October 26, 2021 to December 17, 2021. RESULTS: We received 132 responses, with at least one response from 87 living donor programs (46 kidney programs, 33 kidney and liver programs, and eight liver programs alone). We found 86% of program representatives strongly agreed or agreed that funding adequate to cover the cost of data collection would facilitate LDC participation, 92% agreed or strongly agreed with importance of electronic data submission options, and 74% reported that elimination of requirements to submit duplicative pre-operative information to the Organ Procurement and Transplantation Network (OPTN) would be helpful. Other potentially enabling factors include reduction in duration of OPTN postdonation follow-up requirements, ease-of-use, protection from data use for regulation, adequate data security, and equity in data access. CONCLUSION: This survey identifies potential targets to strengthen participation in the effort to create a national living donor registry in the United States. Collaboration and investment to overcome barriers to LDC participation among transplant programs are vital to generate long-term data on living donation for donor candidates, donors, and patients in need of transplant.

Living donor liver transplantation: A multi-disciplinary collaboration towards growth, consensus, and a change in culture.

INTRODUCTION: Living donor liver transplantation (LDLT) reduces liver transplant waitlist mortality and provides excellent long-term outcomes for persons with end stage liver disease. Yet, utilization of LDLT has been limited in the United States (US). METHODS: In October 2021, the American Society of Transplantation held a consensus conference to identify important barriers to broader expansion of LDLT in the US, including data gaps, and make recommendations for impactful and feasible mitigation strategies to overcome these barriers. Domains addressed encompassed the entirety of the LDLT process. Representation from international centers and living donor kidney transplantation were included for their perspective/experience in addition to members across disciplines within the US liver transplantation community. A modified Delphi approach was employed as the consensus methodology. RESULTS: The predominant theme permeating discussion and polling results centered on culture; the beliefs and behaviors of a group of people perpetuated over time. CONCLUSIONS: Creating a culture of support for LDLT in the US is key for expansion and includes engagement and education of stakeholders across the spectrum of the process of LDLT. A shift from awareness of LDLT to acknowledgement of benefit of LDLT is the primary goal. Propagation of the maxim "LDLT is the best option" is pivotal.

A survey of transplant providers regarding attitudes, barriers, and facilitators to living donor liver transplantation in the United States.

INTRODUCTION: A successful living donor liver transplant (LDLT) is the culmination of a multifaceted process coordinated among key stakeholders. METHODS: We conducted an electronic survey of US liver transplant (LT) centers (August 26, 2021-October 10, 2021) regarding attitudes, barriers, and facilitators of LDLT to learn how to expand LDLT safely and effectively in preparation for the American Society of Transplantation Living Donor Liver Transplant Consensus Conference. RESULTS: Responses were received from staff at 58 programs (40.1% of US LT centers). There is interest in broadening LDLT (100% of LDLT centers, 66.7% of non-LDLT centers) with high level of agreement that LDLT mitigates donor shortage (93.3% of respondents) and that it should be offered to all suitable candidates (87.5% of respondents), though LDLT was less often endorsed as the best first option (29.5% of respondents). Key barriers at non-LDLT centers were institutional factors and surgical expertise, whereas those at LDLT centers focused on waitlist candidate and donor factors. Heterogeneity in candidate selection for LDLT, candidate reluctance to pursue LDLT, high donor exclusion rate, and disparities in access were important barriers. CONCLUSION: Findings from this study may help guide current and future expansion of LDLT more efficiently in the US. These efforts require clear and cohesive messaging regarding LDLT benefits, engagement of the public community, and dedicated resources to equitably increase LDLT access.

Non-pharmacological interventions engaging organ transplant caregivers: A systematic review.

INTRODUCTION: Lay-caregivers in organ transplantation (to candidates, recipients, and donors) are essential to pre- and postoperative care, but report significant caregiving-related stressors. This review aims to summarize studies testing nonpharmacological interventions aimed at improving organ transplant caregiver-reported outcomes. METHODS: In accordance with PRISMA, we conducted a systematic review (searched PubMed, Embase, Cochrane Central, PsycInfo, and CINAHL, no start-date restriction through 7/1/2021). Quality of comparative studies assessed by ROBS-2 or ROBINS. RESULTS: Twelve studies met inclusion. Study designs, interventions, and outcomes varied. Sample sizes were small across caregivers to adults (nine studies, five with caregiver samples ns≤50) and pediatric patients (three studies, caregiver samples ns≤16). Study designs included seven single-arm interventions, two prepost with comparison cohorts, and three randomized-controlled trials. Eight studies included transplant-specific education as the intervention, an interventional component, or as the comparison group. Outcomes included transplant specific knowledge, mental health, and intervention acceptability. Of the nine prepost caregiver assessments and/or comparison groups, four studies demonstrated no statistically significant intervention effects. CONCLUSION: Few interventions addressing the needs of organ transplant caregivers have been empirically evaluated. Existing interventions were well-received by caregivers. Given complexities of care in transplantation, research is needed evaluating interventions using rigorous trial methodology with adequate samples.

Health-related quality of life and psychological indicators of thriving 15-19 years after heart or lung transplantation.

BACKGROUND: Survival into the second decade after cardiothoracic transplantation (CTX) is no longer uncommon. Few data exist on any health-related quality of life (HRQOL) impairments survivors face, or whether they may even experience positive psychological outcomes indicative of "thriving" (e.g., personal growth). We provide such data in a long-term survivor cohort. METHODS: Among 304 patients prospectively studied across the first 2 years post-CTX, we re-interviewed patients ≥15 years post-CTX. We (a) examined levels of HRQOL and positive psychological outcomes (posttraumatic growth related to CTX, purpose in life, life satisfaction) at follow-up, (b) evaluated change since transplant with mixed-effects models, and (c) identified psychosocial and clinical correlates of study outcomes with multivariable regression. RESULTS: Of 77 survivors, 64 (83%) were assessed (35 heart, 29 lung recipients; 15-19 years post-CTX). Physical HRQOL was poorer than the general population norm and earlier post-transplant levels (P's < .001). Mental HRQOL exceeded the norm (P < .001), with little temporal change (P = .070). Mean positive psychological outcome scores exceeded scales' midpoints at follow-up. Life satisfaction, assessed longitudinally, declined over time (P < .001) but remained similar to the norm at follow-up. Recent hospitalization and dyspnea increased patients' likelihood of poor physical HRQOL at follow-up (P's ≤ .022). Lower sense of mastery and poorer caregiver support lessened patients' likelihood of positive psychological outcomes (P's ≤ .049). Medical comorbidities and type of CTX were not associated with study outcomes at follow-up. CONCLUSIONS: Despite physical HRQOL impairment, long-term CTX survivors otherwise showed favorable outcomes. Clinical attention to correlates of HRQOL and positive psychological outcomes may help maximize survivors' well-being.

Are cultural or psychosocial factors associated with patient-reported outcomes at the conclusion of kidney transplant evaluation?

BACKGROUND: Kidney transplant evaluation (KTE) is a period marked by many stressors for patients, which may lead to poorer patient-reported outcomes (PROs). Research on the association of cultural and psychosocial factors with PROs during KTE is lacking, even though cultural and psychosocial variables may mitigate the relationship between acceptance status and PROs. METHODS: Using a prospective cohort study of 955 adults referred for KTE, we examined whether cultural factors and psychosocial characteristics, assessed at the initiation of KTE, are associated with PROs at KTE completion, controlling for demographics and medical factors. Also, we analyzed whether these factors moderate the relationship between transplant acceptance status and PROs. RESULTS: In multivariable regression models, a stronger sense of mastery was associated with higher physical and mental QOL. A stronger sense of self-esteem was associated with higher kidney-specific QOL. Depression was associated with a lower mental QOL, but only in those who were accepted for transplant. Having low levels of external locus of control was associated with better mental QOL in those who were not accepted for transplant. Higher anxiety was associated with poorer kidney-specific QOL among those who were not accepted for KT, but trust in physician was only associated with greater satisfaction in transplant clinic service for those who were accepted for KT. CONCLUSIONS: Targeting interventions to increase patient mastery and external locus of control, and reduce depression and anxiety in patients undergoing kidney transplant evaluation may be useful approaches to improve their experience during this stressful period.

Protocol for the IMPACT Trial: Improving Healthcare Outcomes in American Transplant Recipients Using Culturally-Tailored Novel Technology.

Kidney transplant (KT) recipients face post-transplant health issues. Immunosuppressive agents can cause hyperlipidemia, hypertension, post-transplant diabetes, and glomerulopathy. Post-transplant weight gain and decreased activity are associated with poor quality of life, sleep, and cardiometabolic outcomes. This study will test the feasibility and acceptability of a culturally tailored diet and exercise intervention for KT patients delivered immediately post-transplant using novel technology. A registered dietitian nutritionist (RDN) and physical rehabilitation therapist will examine participants' cultural background, preferences, and health-related obstacles (with consultation from the transplant team) to create an individualized exercise and meal plan. The RDN will provide medical nutrition therapy via the nutrition care process throughout the course of the intervention. The Twistle Patient Engagement Platform will be used to deliver and collect survey data, communicate with participants, and promote retention. Outcomes to be assessed include intervention feasibility and acceptability and intervention efficacy on patients' adherence, medical, quality of life, and occupational outcomes.

Findings and recommendations from the organ transplant caregiver initiative: Moving clinical care and research forward.

Lay-caregivers are essential to the continuum of care in adult organ transplantation. However, we have a limited understanding of the experiences, exigencies, and outcomes associated with lay-caregiving for organ transplant patients. While much discussion and debate has focused on caregiver requirements in relation to transplant candidate selection, little focus has been given to understanding the needs of caregivers themselves. In response to this, the Organ Transplant Caregiver Initiative was created, and a meeting was held during October 6-7, 2019. Transplant healthcare professionals, researchers, and lay-caregivers discussed the experiences, educational needs, existing research, and research recommendations to improve the experience of lay-caregivers for adult organ transplant patients. In this report, we summarize the Organ Transplant Caregiver Initiative and meeting findings, providing a preliminary action plan to improve education, research, and advocacy for organ transplant caregivers.

Subjective Sleep Quality and Trajectories of Interleukin-6 in Older Adults.

BACKGROUND: We aimed to identify trajectories of inflammation in older adults at elevated risk for syndromal depression and anxiety and to determine whether baseline physical, cognitive, and psychosocial factors could distinguish 15-month longitudinal trajectories. METHODS: Older adults (N = 195, mean age (±SD) = 74.4 years (9.0) participating in three depression and anxiety prevention protocols completed a comprehensive battery of psychosocial assessments and provided blood samples for analysis of interleukin-6 (IL-6) every 3 months over a maximum of 15 months. Group-based trajectory modeling identified trajectories. Adjusted logistic regression examined associations between baseline factors and trajectory groups. RESULTS: Two 15-month trajectories were identified: stable lower IL-6 levels (84%; mean (±SD) = 3.2 (2.1) pg/mL); and consistently higher IL-6 levels (16%; mean = 9.5 (7.4) pg/mL). Poor sleep quality predicted consistently higher levels of IL-6 (OR = 1.9, 95% CI = 1.03-3.55). CONCLUSION: Poor sleep quality may represent a therapeutic target to reduce inflammation.

Symptoms of anxiety after heart transplantation and their association with mortality: A secondary analysis.

BACKGROUND: Few studies, with inconclusive results, have examined the association of anxiety with mortality after heart transplantation (HTx). We examined whether anxiety symptoms, measured several years after HTx, are associated with increased mortality during long-term follow-up. METHODS: Anxiety symptoms were measured with the anxiety subscale of the Symptom Checklist-90-R (SCL-90-R) in 142 HTx recipients at a mean of 5.7 years (SD: 3.9) after HTx. Anxiety symptoms' impact on mortality during follow-up for up to 18.6 years was examined with Cox proportional hazard models. We accounted for relevant sociodemographic and clinical variables, including depressive symptoms (measured by the depression subscale of the SCL-90-R), in the multivariate analyses. In additional analyses, we explored the combined effect of anxious and depressive symptomatology. RESULTS: Anxiety symptoms were not significantly associated with mortality (univariate analysis: HR (95% CI): 1.04 (0.75-1.45); p = .813). Exploration of the combined effect of anxious and depressive symptomatology on mortality rendered non-significant results. Depressive symptoms were independently associated with mortality (multivariate analysis: HR (95% CI): 1.86 (1.07-3.24); p = .028). CONCLUSIONS: Depressive symptoms' negative impact on survival after HTx was confirmed, while anxiety symptoms were not significantly associated with mortality during long-term follow-up. Anxiety symptoms' predictive role after HTx requires further study.

Outcomes of living liver donor candidate evaluations in the Living Donor Collective pilot registry.

BACKGROUND: To gather information on long-term outcomes after living donation, the Scientific Registry of Transplant Recipients (SRTR) conducted a pilot on the feasibility of establishing a comprehensive donor candidate registry. METHODS: A convenience sample of 6 US living liver donor programs evaluated 398 consecutive donor candidates in 2018, ending with the March 12, 2020, COVID-19 emergency. RESULTS: For 333/398 (83.7%), the donor or program decided whether to donate; 166/333 (49.8%) were approved, and 167/333 (50.2%) were not or opted out. Approval rates varied by program, from 27.0% to 63.3% (median, 46%; intraquartile range, 37.3-51.1%). Of those approved, 90.4% were white, 57.2% were women, 83.1% were < 50 years, and 85.5% had more than a high school education. Of 167 candidates, 131 (78.4%) were not approved or opted out because of: medical risk (10.7%); chronic liver disease risk (11.5%); psychosocial reasons (5.3%); candidate declined (6.1%); anatomical reasons increasing recipient risk (26.0%); recipient-related reasons (33.6%); finances (1.5%); or other (5.3%). CONCLUSIONS: A comprehensive national registry is feasible and necessary to better understand candidate selection and long-term outcomes. As a result, the US Health Resources and Services Administration asked SRTR to expand the pilot to include all US living donor programs.

Role of Race/Ethnicity in Donor Decisions about Unrelated Hematopoietic Progenitor Cell Donation: Exploring Reasons for Higher Attrition among Racial/Ethnic Minorities.

There are more than 30 million potential unrelated hematopoietic progenitor cell (HPC) donors listed on international registries, but 30% to 50% are unavailable after matching a patient. In the United States racial/ethnic minorities opt out of donation at higher rates, and a previous study identified factors associated both with attrition and ethnic group membership. Attrition among minorities is also higher in the Anthony Nolan UK registry (35% in white British [WB] and 56% in nonwhite British [NWB]), but it is not clear what factors produce higher attrition in the United Kingdom and whether they are similar to those found in the United States. Three hundred fifty-seven UK potential donors who matched a patient completed a questionnaire. Key factors were compared by donation decision (continue or opt out) and by race/ethnicity (WB versus NWB). The pattern of UK results was compared with that of the previous US study for variables assessed in both studies. Across WB and NWB donors, higher attrition was associated with poorer physical/mental health, greater ambivalence, and more concerns about donation. Donors who opted out also reported less interaction with the registry, and 16% indicated that more interaction with the registry would have changed their decision. Those opting out of the registry and minorities were both more likely to report religious objections to donation and to mistrust the fairness of HPC allocation. The pattern of findings was similar in UK and US samples. Registries should maintain contact with potential donors after recruitment, aiming to educate members about the donation procedure and to address potential misconceptions associated with religious beliefs and HPC allocation.

Digital Monitoring of Sleep, Meals, and Physical Activity for Reducing Depression in Older Spousally-Bereaved Adults: A Pilot Randomized Controlled Trial.

OBJECTIVES: To evaluate the feasibility and acceptability of a behavioral intervention and explore its impact on depression symptom burden among older spousally-bereaved adults. METHODS: Participants were age ≥60 years, bereaved ≤8 months, and at high risk for depression. Participants were randomized to 12 weeks of digital monitoring of sleep, meals, and physical activity; digital monitoring plus health coaching; or enhanced usual care and followed for 9 months for new-episode depression. RESULTS: We enrolled 57 participants, 85% of eligible adults and 38% of all adults screened. We observed high levels of adherence in both digital monitoring (90%) and health coaching (92%); 88% of participants were retained. In linear mixed-effects models, depression symptoms significantly decreased, but the interaction between time and intervention was not significant. CONCLUSION: A behavioral intervention that uses both digital monitoring and motivational health coaching is feasible and acceptable to older bereaved adults.

Promoting medication adherence from the perspective of adolescent and young adult kidney transplant recipients, parents, and health care professionals: A TAKE-IT TOO study.

Medication non-adherence is an important factor limiting allograft survival after kidney transplantation in AYA. Some interventions, including the TAKE-IT, showed some success in promoting adherence but the potential for scalability and use in routine clinical practice is limited. We applied user-centered design to gather the perspectives of recipients, parents, and health professionals concerning their needs, challenges, and potential intervention strategies to design an optimal, multi-component medication adherence intervention. The qualitative study was conducted at four Canadian and three American kidney transplant programs. Separate focus groups for recipients, parents, and health professionals were convened to explore these stakeholders' perspectives. Directed content analysis was employed to identify themes that were shared vs distinct across stakeholders. All stakeholder groups reported challenges related to taking medications on time in the midst of their busy schedules and the demands of transitioning toward independence during adolescence. The stakeholders also made suggestions for the multi-component behavioral intervention, including an expanded electronic pillbox and companion website, education materials, and customized digitized features to support shared responsibility and communication among recipients, parents, and health professionals. Several suggestions regarding the functionality and features of the potential intervention reported in this early stage will be explored in more depth as the iterative process unfolds. Our approach to actively involve all stakeholders in the process increases the likelihood of designing an adherence intervention that is truly user-informed and fit for the clinical setting.

Trajectories and predictors of stress and depressive symptoms in spousal and intimate partner cancer caregivers.

PURPOSE: The objective of the study is to investigate trajectories of stress and depressive symptoms of spousal and intimate partner caregivers in the context of cancer. We also examined the patient-related predictors of caregiver stress and depression. DESIGN: This is a longitudinal cohort study. PARTICIPANTS: Patients diagnosed with cancers affecting the hepatobiliary and pancreatic system and their spousal or intimate partner caregivers were recruited at a large tertiary cancer center. METHODS: The patients and caregivers were assessed for their level of stress, depressive symptoms, relationship quality, and quality of life at the time of the patients' diagnosis, every 2 months for 12 months and then at 18 months. FINDINGS: One hundred and seventy-nine caregivers were included in the trajectory analyses. Amongst the 179 caregivers, 120 patient and caregiver dyads had complete data at baseline to 6-months. The majority of the spousal caregivers were female (84%) and the mean age was 57 years. 25% of caregivers reported high levels of chronic depressive symptoms. However, significant reductions were observed at 6 months. High and moderate levels of caregiver stress were also reported in 21% and 36% of caregivers, respectively. The caregivers who reported moderate levels of stress had a decrease in stress over time while those in the high stress group reported stable levels of stress over time. Caregivers' stress is predicted by the cancer patients' depressive symptoms but not patients' quality of life. CONCLUSIONS: Caregivers who reported high levels of stress and depressive symptoms at patients' cancer diagnosis remain high even after the initial adjustment. A bidirectional relationship between the caregivers' stress and the patients' depressive symptoms was observed. IMPLICATIONS: The development of dyadic interventions focusing on the patients' and caregivers' distress is warranted to decrease psychological morbidities of the dyad.