Caregiver Preferences Research Articles

Understanding drivers of treatment preferences in locally advanced or metastatic urothelial carcinoma: A qualitative interview study with patients, caregivers, and physicians.

492 Background: The development and selection of treatments for locally advanced or metastatic urothelial carcinoma (la/mUC) have historically focused on clinical outcomes while stakeholder preferences are often considered less frequently. To facilitate the consideration of various perspectives, this study explored factors that may influence preferences of patients, caregivers, and physicians around aspects of la/mUC treatments. Methods: Interview guides elicited perspectives on disease impact (symptoms, health-related quality of life [HRQOL], survival), therapy goals and unmet needs and were conducted with patients with la/mUC, their caregivers, and medical oncologists in the US. Qualitative semi-structured data were collected on symptoms, treatment expectations, and hypothetical treatments that required trade-offs between overall survival (OS), progression-free survival (PFS), cancer pain, and the risk of severe adverse events (SAEs). Participant’s willingness to accept AEs was also explored. Results: Thirty participants, including: 10 patients (mean age 58 years; 60% female, ineligible for cisplatin: 50%), 10 caregivers (mean age 50 years; 70% female), and 10 physicians (mean 17 years treating la/mUC; 30% female) were interviewed. The most frequently reported symptom at diagnosis was pain (patients 90%, caregivers 90%) and blood in urine (physicians 100%). All three groups reported emotional impacts with depression/sadness the most common. Patients (n=7) and caregivers (n=7) relied on physicians for decision-making but felt that alternative treatments were not discussed (patients: n=5; caregivers: n=3). All groups were willing to accept some level of risk of experiencing an AE, but the accepted risk of SAEs varied (patients: 0-50% risk of SAEs; caregivers: 5-100%; physicians: 3-30%). Physicians focused treatment discussions on AEs (n=8), and overall response rate (ORR; n=6), and rarely discussed survival (n=3). All three groups described PFS and treatment response as very or most relevant to them. In the hypothetical choice tasks, all would make trade-offs between OS, PFS, pain reduction and risk of SAEs; consistent with an approach that weighs benefits and risks in treatment selection. Conclusions: Patients likely may benefit from shared, informed decision-making to identify the most appropriate treatment option for them based on clinical outcomes, AEs, HRQOL, and pain control. All groups were willing to make benefit-risk trade-offs but preferences were heterogeneous. While this study included a relatively small number of patients, planned research informed by these results will expand and further identify which treatment attributes are most important to patients.

Telemedicine preferences in pediatric urology following the COVID-19 pandemic: A caregiver survey

PurposeThe COVID-19 pandemic dramatically changed the way many patients interacted with their healthcare providers, with many people being forced to use telemedicine out of necessity. Our study aimed to investigate if this increased usage of telemedicine impacted pediatric patient caregivers’ perception of telemedicine for pediatric urology visits.Materials and MethodsA prospective survey was administered to the primary caregiver of all patients less than 18 years of age during either an in-person (IP) or a telemedicine (TM) encounter. The survey included questions regarding accessibility to and opinions toward telemedicine.ResultsTwo hundred, thirty-nine total patient caregivers were surveyed: 209 IP and 30 TM. Most caregivers in both cohorts reported being more likely to use telemedicine now than before the pandemic: IP (125/209, 59.8%) and TM (23/30, 76.7%). Caregivers also reported that the severity of their child’s condition would impact their likelihood to utilize telemedicine for evaluation (IP 162/209 (77.5%) vs. TM 28/30 (93.3%) with caregivers in the TM group even more likely to be influenced by this factor (p = 0.045). Most caregivers in both groups reported that they would utilize telemedicine within 60 miles from the provider. Over 80% of families from both groups reported having both a laptop and a cellular phone in their home. A greater percentage of caregivers in the IP group reported having a desktop computer and a tablet in their home compared to the TM group (41.1% versus 20.0% and 27.3% versus 3.3%, respectively).ConclusionsLiving through the COVID-19 pandemic has increased the likelihood of caregivers to utilize telemedicine for care of their child’s pediatric urologic disorder. Factors such as severity of illness, distance from the provider, and the context of the evaluation influenced caregiver preferences for utilization of telemedicine. All families surveyed reported having a device at home to perform telemedicine. Laptops and cellular phones were the most commonly used devices.

Safety differences across androgen receptor inhibitors in nonmetastatic castration-resistant prostate cancer.

Approval of apalutamide, enzalutamide and darolutamide has transformed the treatment landscape and guideline recommendations for patients with nonmetastatic castration-resistant prostate cancer but now raises the issue of decision-making regarding treatment selection. In this perspective, we discuss the efficacy and safety of these second-generation androgen receptor inhibitors and propose that for patients with nonmetastatic castration-resistant prostate cancer, safety considerations for these treatments are especially important. We examine these considerations in the context of patient and caregiver preferences as well as patient clinical characteristics. We further posit that consideration of treatments' safety profiles should include not only the initial direct impacts from potential treatment-emergent adverse events and drug-drug interaction events, but also the full cascade of potentially avoidable healthcare complications.

Growing up in Nso: Changes and continuities in children's relational networks during the first three years of life

AbstractIt is an undisputed fact among attachment researchers that children need stability and continuity in their caregiving environment for optimal developmental outcomes. However, anthropological studies show that informal and often temporally limited kinship‐based foster care, including changes of children's primary caregivers, is widespread in some cultural contexts and considered normative and thus beneficial for children. Based on ethnographic interviews with Nso families in northwestern Cameroon, we analyzed the dynamics of caregiving arrangements and relational networks during infancy and early childhood. Exploring household compositions, caregiving responsibilities, children's preferred caregivers, and foster care arrangements revealed multiple caregiver networks, with the importance of the mother decreasing and the importance of alloparents and peers increasing as the children grow older. Also, families have fluid boundaries, with about one‐third of the children changing households in the first three years of life. The Nso children's experiences reflect a relational cultural model of infant care as a cooperative task and a communal conception of attachment. The results are discussed in relation to attachment theory's claims about universal patterns of development.

Burden of Treatments for Respiratory Complications in Extremely Premature Infants: Interviews with Caregivers

Introduction: Extremely premature (EP) infants (<28 weeks gestational age) with respiratory conditions after discharge from the neonatal intensive care unit (NICU) impose a significant burden on caregivers. This study explored caregiver burden post-NICU discharge and perceptions of meaningful change in infant chronic respiratory morbidity. Methods: Adult primary caregivers of EP infants 3–14 months corrected age were recruited through patient advocacy organizations or hospital centers in the USA, Northern Ireland, Germany, and Japan and interviewed by phone. Interviews explored caregiver experiences with infants with respiratory conditions, associated treatment burden, and meaningful change in infant respiratory morbidity as measured by treatment use. Qualitative analysis of interview data was performed using MAXQDA software. Sociodemographic data were summarized using descriptive statistics. Results: Forty-five caregivers (95.6% female) of EP infants were interviewed. Respiratory morbidities post-NICU discharge included coughing (78%), breathing difficulties (76%), wheezing (58%), and bronchopulmonary dysplasia/chronic lung disease of prematurity (56%). Respiratory medications were required by 87% of infants, 80% used home respiratory technology support (e.g., supplemental oxygen), 38% were re-hospitalized, and 33% had emergency department visits. Caregivers considered visits to the emergency department to be the most burdensome treatment requirement they experienced, and reduction in the number of emergency department visits was considered the most meaningful change in treatment use. Conclusion: These findings underscore the significant burden faced by caregivers of EP infants with respiratory morbidities. Development of treatments for respiratory complications should take into consideration the concerns and preferences of caregivers in order to provide a meaningful benefit.

Communication about sudden unexpected death in epilepsy: Understanding the caregiver perspective

AbstractObjectiveWe aimed to characterize (1) the caregiver experience of learning about sudden unexpected death in epilepsy (SUDEP), and (2) caregiver preferences for SUDEP risk disclosure.MethodsWe distributed a 24‐question survey to caregivers of children with epilepsy. Free text questions were analyzed using a rapid qualitative analysis approach.ResultsTwo hundred and twelve caregivers of people with epilepsy completed the survey, including 12 bereaved caregivers. Caregivers' children had a high seizure burden, with a median seizure frequency of 24 seizures per year (range: 1 to ≥100). Most participants were aware of SUDEP at the time of the survey (193/212; 91%) though only a minority had learned about SUDEP from a healthcare provider (91/193; 47.2%). Caregivers typically learned about SUDEP from a nonprofit or online source (91/161; 56.5%). Almost all caregivers wanted to discuss SUDEP with their child's healthcare provider (209/212; 98.6%), and preferred disclosure from epileptologists (193/212; 91%), neurologists (191/212; 90.1%), and/or primary care providers (98/212; 46.2%). In open‐ended responses, caregivers highlighted the value of learning about SUDEP from a healthcare provider, the importance of pairing SUDEP risk disclosure with a discussion of how to mitigate risk, and the need for educational resources and peer support.InterpretationCaregivers of people with epilepsy appreciate when healthcare providers disclose information about SUDEP, yet typically hear about SUDEP elsewhere. These findings underscore the importance of interventions to improve and support SUDEP risk disclosure. Future work should evaluate strategies to disclose SUDEP risk and the impact of early SUDEP risk disclosure.

Development of a Cystic Fibrosis Primary Palliative Care Intervention: Qualitative Analysis of Patient and Family Caregiver Preferences

To prevent or mitigate chronic illness burden, people with cystic fibrosis (pwCF) and their family caregivers need primary (generalist-level) palliative care from the time of diagnosis forward. We used qualitative methods to explore their preferences about a screening-and-triage model ("Improving Life with CF") developed to standardize this care. We purposively sampled and interviewed 14 pwCF and caregivers from 5 Improving Life with CF study sites. Thematic analysis was guided by a priori codes using the National Consensus Project's Guidelines for Quality Palliative Care. Participants included 7 adults and 2 adolescents with CF (3 with advanced disease), 4 parents, 1 partner (7 women; 5 people of color). Few were familiar with palliative care. Illness burden was described in multiple domains, including physical (e.g., dyspnea, pain), psychological (e.g., anxiety), and social (e.g., family well-being; impact on work/school). Most preferred survey-based screening with care coordination by the CF team. Preferences for screening approaches varied. PwCF and caregivers experience illness burden and are receptive to a CF-team delivered primary palliative care screening-and-triage model with flexible processes.

Colon Cancer Screening and the End of Life: Is Age Just a Number?

Age is the strongest risk factor for colorectal cancer. Although there is updated guidance for the age at which to start screening, there is little guidance for individuals or their medical teams on how to decide when to stop. Current recommendations from the US Preventive Services Task Force and other societies focus primarily on age. For patients older than 85 years, guidelines discourage screening because the harms largely outweigh benefits. Although at a population level, the overall benefit of screening in older individuals decreases, one must individualize the recommendation based on comorbidities, functional status, screening history, and gender-not solely base it on age. Patient and caregiver preferences must also be thoroughly explored. Current models struggle with incorporating other colorectal cancer risk factors such as family history, previous adenomas, and modality of previous screening into recommendations and simulations, but are likely to improve with machine learning and whole electronic health record prediction-based approaches.

Exploring the Presence of Humanoid Social Robots at Home and Capturing Human-Robot Interactions with Older Adults: Experiences from Four Case Studies

Social robots have the potential to bring benefits to aged care. However, it is uncertain whether placing these robots in older people's home is acceptable and whether human-robot interactions would occur or not. Four case studies were conducted to understand the experiences of older adults and family caregivers when humanoid social robot Ka Ka was placed in homes for two weeks. Four older adults and three family caregivers were involved. Older adults interacted with the social robot Ka Ka every day during the study period. 'Talking to Ka Ka', 'listening to music', 'using the calendar reminder', and 'listening to the weather report' were the most commonly used features. Qualitative data reported the strengths of Ka Ka, such as providing emotional support to older adults living alone, diversifying their daily activities, and enhancing family relationships. The voice from Ka Ka (female, soft, and pleasing to the ear) was considered as 'bringing a pleasant feeling' to older adults. In order to support aging-in-place and fill the gaps of the intensified shortage of health and social manpower, it is of prime importance to develop reliable and age-friendly AI-based robotic services that meet the needs and preferences of older adults and caregivers.

SHARED DECISION-MAKING WITH COST INFORMATION IN THE CONTEXT OF AGE-FRIENDLY CARE

Abstract The proposed poster session will explore shared decision making—the patient-clinician communication to decide on tests, treatment and care based on clinical evidence, balancing risks and outcomes with patient and caregiver preferences and values—and how evidence-based strategies, such as shared decision-making tools, or decision aids, can support older adults and their caregivers/care partners as they navigate the healthcare system. Notably, the session will share findings from FAIR Health’s grant-funded initiatives to advance shared decision making through decision aids, which combine clinical and cost information for specific clinical scenarios, and are freely available for consumers on fairhealthconsumer.org and for healthcare providers on fairhealthprovider.org. As such, the session will offer diverse perspectives and a unique spotlight on the financial and patient- and caregiver-centered aspects of healthcare decision making. Through FAIR Health’s needs assessment for a current project funded by The John A. Hartford Foundation, which has as its goal to advance shared decision making among older adults with serious illness and family caregivers, FAIR Health collected qualitative feedback from older patients, family caregivers and healthcare providers regarding perspectives on navigating the healthcare system. Through a national survey of older patients and family caregivers, FAIR Health found that: (1) though a significant proportion of older adults consider healthcare costs to be an important factor when making healthcare decisions, more than a third have difficulty getting such cost information; and (2) family caregivers/care partners expressed an appetite and need for healthcare information, resources and tools that facilitate better decisions about their care receiver’s care.

BUILDING CAPACITY FOR DEMENTIA CAREGIVER TOOLS AND PRAGMATIC TRIALS THROUGH STAKEHOLDER ENGAGEMENT

Abstract Caregivers face challenges communicating and coordinating health-related needs on behalf of persons living with dementia (PLWD). This presentation will highlight capacity building activities at UCHealth, a large academic health system in Colorado and Wyoming, to prepare for pragmatic clinical trials to test integrated health informatics tools to improve the care of PLWD and their family caregivers. We will describe foundational activities of: 1) convening diverse patient and family caregivers to identify communication priorities and refine health informatics tools, 2) engaging health system leaders to develop a system-based value proposition, and 3) partnering with health informatics teams to adapt tools (i.e., dementia registry, refined patient portal tools) and implement reports of pragmatic outcomes. Through support as an NIA IMPACT Health Care System Scholar, we will discuss lessons learned related to highlighting the preferences of diverse caregivers, especially related to use of health informatics tools in the context of dementia care.

SOCIAL PARTICIPATION AND DEPRESSIVE SYMPTOMS AMONG SPOUSAL AND ADULT CHILD CAREGIVERS

Abstract Participating in social activities through formal (e.g., social or religious organizations) and informal (e.g., gatherings with family members or friends) avenues is known to positively contribute to mental wellbeing. Family caregivers are at risk for limited social participation and increased depressive symptoms. However, little is known about which social activities are associated with depressive symptoms among spousal and adult child caregivers. The purpose of this study was to examine the effects of participating in various social activities on depressive symptoms among spousal (n=422) and adult child (n=1,112) caregivers using data from the 2017 wave of the National Study of Caregiving. Caregivers reported on participating in six social activities in the past month (e.g., visiting family and friends, attending religious services, doing volunteer work, working for pay) and completed the 2-item Patient Health Questionnaire to assess depressive symptoms. Data were analyzed using multiple linear regression, with separated models for spousal and adult child caregivers. Sociodemographic characteristics, self-rated health, and dementia caregiving status were included as covariates. For spousal caregivers, visiting friends or family and attending religious services were associated with lower depressive symptoms (b=-.55, p=.010 and b=-.33, p=.036, respectively). For adult child caregivers, going out for enjoyment was associated with lower depressive symptoms (b=-.80, p&amp;lt;.001). Findings suggest that spousal and adult child caregivers may benefit from participating in different types of social activities. Interventions targeting social participation to reduce depressive symptoms need to be tailored to the needs and preferences of spousal and adult child caregivers to be most effective.

THE ROLE OF GENDER IN FATHERS' AND MOTHERS' PREFERENCES FOR FUTURE ADULT CHILDREN CAREGIVERS

Abstract Previous caregiving research has focused on a single care recipient; however, no research has explored the potential simultaneous care needs of fathers and mothers in the same family. Drawing from gender role theory, we use qualitative data from 76 spousal dyads from the Within-Family Differences Study to compare fathers’ and mothers’ explanations of which adult child they prefer as their future caregiver. In 72% of families, fathers and mothers did not share the same care preferences suggesting that care preferences are dispersed among multiple adult children within the same family. In families in which fathers and mothers shared care preferences, 75% chose the same daughter. Additional findings showed that fathers’ explanations for a preferred caregiver aligned with mothers’ explanations; however, differences were identified based on children’s gender. These findings shed light on the similarities and differences in parental care preferences and underscore the influence of gender in family care networks.

An Exploration of Service Needs and Preferences of Dementia Caregivers in Kentucky

As Americans live longer, the prevalence of Alzheimer’s disease and related dementias will increase. Caregivers are critical to the care and life quality of people with dementia. Yet, dementia caregivers are at increased risk for health issues, social isolation, and financial challenges. To help educators with the University of Kentucky Cooperative Extension Service work with their local Alzheimer’s Association and the University of Louisville to better support dementia families, we explored caregiver needs and service utilization using an online survey. Our findings highlighted the need for counseling/support, care management skills, resource education, self-care strategies, and legal services. Extension Service Educators can use this information to inform program development and support dementia families.

Screening for adverse childhood experiences in pediatrics: A randomized trial of aggregate-level versus item-level response screening formats.

While there is growing support for screening for Adverse Childhood Experiences (ACEs), rigorous evidence on the efficacy and preference of screening methods is needed. To examine caregiver: (1) rates of disclosure of their child's exposure to ACEs using item-level response (each item can be endorsed) versus aggregate-level response (only total score reported) screening format, (2) associations between family demographic factors and disclosure by screening format, and (3) emotional reaction and experience of screening formats in a diverse, low-income pediatric population. Caregiver participants (n = 367) were randomized to complete the Pediatric ACEs and Related Life Events Screener (PEARLS) tool, in an aggregate-level response vs item-level response format from 2016-2019. Select caregivers (n = 182) participated in debriefing interviews. T-test and chi-square analyses in 2019 compared PEARLS disclosure rates and reactions between the screening modalities. Regression models explored interactions with child characteristics. Thematic analysis of interview notes captured caregiver screening experience. PEARLS disclosure rates were significantly higher in the aggregate-level response compared to the item-level response screening arm (p <0.05). This difference was accentuated for children identified as black and/or male (p <0.05). Caregiver reactions to PEARLS screening were rarely negative in either screening format. Qualitative data demonstrated strong caregiver preference for the item-level response format; additional themes include provider relationship, fear with disclosure, and screening outcome expectations. While caregivers reported a preference for the item-level response format, the aggregate-level response screening format elicited higher disclosures rates particularly for children who are black or ma. Clinical trial registry: NCT04182906.

Communication Preferences of Parents and Caregivers of Children and Youth With Special Healthcare Needs During a Hypothetical Infectious Disease Emergency.

Children and youth with special healthcare needs are at risk for severe consequences during infectious disease emergencies. Messages for parents and caregivers from trusted sources, via preferred channels, that contain the information they need, may improve health outcomes for this population. In this mixed methods study, we conducted a survey (N = 297) and 80 semistructured interviews, with 70 caregivers of children and youth and 10 young adults with special healthcare needs, between April 2018 and June 2019 in Pennsylvania. The survey presented 3 scenarios (ie, storm, disease outbreak, radiation event); the interviews included questions about storms and an outbreak. This article addresses only the disease outbreak data from each set. Participants were recruited through convenience samples from an urban tertiary care children's hospital and practices in a statewide medical home network. In this article, we summarize the preferred information sources, channels, and content needs of caregivers of children and youth with special healthcare needs during an infectious disease emergency. Nearly 84% of caregivers reported that they believe their child's doctor is the best source of information. Other preferred sources include medical experts (31%); the US Centers for Disease Control and Prevention (30%); friends, family, and neighbors (21%); and local or state health and emergency management (17%). Pediatric healthcare providers play an important role in providing information to parents and caregivers of children and youth with special healthcare needs during an infectious disease emergency. Public health agencies can establish health communication plans that integrate medical practices and other reliable sources to promote the dissemination of accurate information from trusted messengers.

PP53 Applying The VALIDATE Approach To Frame The Assessment Of Integrated Care Management In Aortic Valve Stenosis

IntroductionThe assessment of current technologies needs a more holistic approach to obtain accurate recommendations for decision-making. The VALues In Doing Assessments of health TEchnologies (VALIDATE) methodology considers that facts and values from all stakeholders need to be included in the scoping of an assessment to gather the comprehensive information needed for unbiased decision-making. This report aimed to explore how to properly assess the integrated care of patients with aortic valve stenosis (AVS) using the VALIDATE approach.MethodsA literature review was conducted, and 11 semi-structured interviews were performed with various hospital-based healthcare professionals (cardiac surgeon, clinical cardiologist, interventional cardiologist, anesthetist, process coordinator nurse, and others) and patients. Content analysis was used for data analysis and integration.ResultsThe literature review showed that the cardiology and cardiac surgery perspectives were dominant in 90 percent of the articles and present in the remaining ten percent. The perspectives of other specialties (anesthesiology, primary care, and psychology) were included in three percent of the articles and patient perspectives were included in nine percent. Interviewing and considering the perspectives of the different stakeholders involved in the care pathway identified the following indicators that should be included in the assessment care for patients with AVS: difficulties associated with late diagnosis of AVS; the need to incorporate a multidisciplinary approach in patient risk assessment; the importance of geriatric evaluations; considering patient (and family and caregiver) preferences for type of treatment; the importance of following up pharmaceutical treatment and palliative care; use of telemonitoring; and digital exclusion of patients with respect to the use of apps for prehabilitation and rehabilitation.ConclusionsThe stakeholders interviewed were involved in different steps of the care pathway and had differing needs, some of which were not found in the literature. The indicators suggested for inclusion in the assessment differed according to type of stakeholder and their involvement in the care pathway. Therefore, this case study exemplifies the VALIDATE method and endorses the need for multistakeholder involvement in eliciting values when scoping the assessment of a complex technology.

Tailoring Recruitment Communication using Virtual Human Technology to Increase Participation of Older Minority Adults in Clinical Trials

AbstractBackgroundOlder adult minorities are an underserved population, who are at a particularly high risk for developing chronic health conditions and are significantly underrepresented in clinical research. Well‐known barriers, including research‐related mistrust (e.g., belief that participants lack choice, mistrust of white researchers), complicated messaging, lack of cultural diversity/sensitivity among clinical trials staff, and the exclusion of decisional support providers in decision‐ making could impede older adult minority participation in clinal trials.Tailoring content and source preferences to be patient‐ centered, culturally sensitive (i.e., promote feelings of comfort, trust, respect), simple to understand, and personally relevant to the receivers (patients and caregivers) has been linked to positive health behaviors among older adult minorities. Additionally, tailoring is critical to improving comprehension, clear and complete understanding of the messaging. However, tailoring has not been systematically studied as a strategy to increase clinical trial participation rates of older adult minorities, including those with cognitive challenges. Our long‐term goal is to increase clinical trial participation among older adult minorities (Black/African American, Hispanic/Latinx, and/or rural adults over the age of 50) using virtual human technology (VHT). Specifically, we are using community‐based participatory research principles to develop virtual humans that can interact with receivers to deliver tailored intervention content.MethodIn Aim 1, we will conduct focus groups with older adult minorities to redesign ALEX to develop culturally sensitive messages designed specifically for older adults, including those with subjective cognitive difficulties. In Aim 2, we will disseminate the intervention and track engagement of older adult minority participants into active, NIH‐funded clinical trials across different modalities for remotely delivering ALEX. In Aim 3, we will compare whether using ALEX to deliver interactive and tailored clinical trial content is more effective than standard (e.g., static) recruitment materials for enrolling older minorities into NIH‐funded clinical trials.ResultWe will describe patient and caregiver preferences for intervention modality and content.ConclusionAchievement of these project aims is expected to result in an adaptable, minimally tailored VHT recruitment intervention for increasing older adult minority participation rates in active NIH‐funded clinical trials.

VALUES AND PREFERENCES OF PATIENTS AND CAREGIVERS REGARDING TREATMENT OF ATOPIC DERMATITIS: A SYSTEMATIC REVIEW

<h3>Introduction</h3> Patient values and preferences can inform atopic dermatitis (AD) care. Systematic summaries of studies addressing patient and preferences have not been previously available. <h3>Methods</h3> Paired reviewers independently systematically screened MEDLINE, EMBASE, CENTRAL, PsychINFO, and CINAHL databases from inception until Feb 2022 for studies of patients with AD or their caregivers eliciting values and preferences about treatment, rated risk of bias, and extracted data. We used thematic and inductive content analysis to qualitatively synthesize the findings. GRADE-CERQual informed rating of quality of evidence. <h3>Results</h3> We identified 7780 studies of which 62 (n=19442; median age across studies 15 years [range 3-44]) proved eligible. High certainty evidence showed that patients and caregivers prefer to start with non-medical treatments and to step-up therapy with increasing AD severity. Moderate certainty evidence showed that side-effects from treatment are a significant concern. Low certainty evidence showed that patients and caregivers prefer odourless treatments that are not visible and have a low impact on daily life. Patients value treatments capable of relieving itching and burning skin and prefer to apply topical corticosteroids sparingly. Patients value a strong patient-provider relationship. <h3>Conclusion</h3> We systematically reviewed patient and caregiver values and preferences and identified 7 themes in relation to the management of AD: there is a preference to start with non-medical treatments, avoid negative side effects, relieve itching and burning, use steroids sparingly, use treatments with limited visibility or odour, use treatments with limited impact on daily activities, and a desire for a stronger patient-provider relationship.

Recommendations for Providing Medication Adherence Support After Pediatric Hematopoietic Stem Cell Transplant: Caregivers' Lived Experience.

Background. Medication adherence is challenging after pediatric hematopoietic stem cell transplant (HCT), particularly after hospital discharge. Post-HCT medication adherence is important to manage morbidity and mortality risk. Designing interventions that are effective and acceptable to caregivers is key to improving post-HCT medication adherence. This study aimed to characterize caregiver preferences about medication adherence support from their child's medical team. Methods. Twenty-nine caregivers of children who received an HCT completed semi-structured qualitative interviews about their experience with, and recommendations for improving, medication adherence support provided by the medical team. Twenty-two caregivers also completed a card sort task to clarify the content of received support and caregiver recommendations for future HCT families. Results. Thematic analysis revealed eight themes grouped into two categories: Communication Is Key and Practical Medication Adherence Support. Caregivers emphasized the importance of communication in helping them manage their child's outpatient medications and provided suggestions to further strengthen communication. The types of practical medication adherence support used varied across caregivers highlighting the importance of tailoring adherence support to each family's needs. Caregivers also identified all the domains as potentially helpful for other families. Discussion. Findings suggest that caregivers prefer that efforts to improve outpatient medication adherence post-HCT prioritize the medical team initiating frequent, clear, and open communication about medications, and provide educational materials on adherence (e.g., handouts). Results also indicate that practical medication adherence supports should be offered based on family preferences but that families may particularly appreciate tips about addressing medication challenges based on other caregivers' lived experience.