Feasibility pilot trial of a tailored medication adherence-promotion intervention for adolescents and young adults with cancer: Study design and protocol.

BACKGROUND: Medication non-adherence is common among adolescents and young adults (AYAs) with cancer and associated with poor health outcomes. AYAs with cancer endorse multiple barriers to adherence that differ across individuals, suggesting that tailoring intervention content to an AYA's specific barriers may have the potential to improve adherence. The purpose of this manuscript is to report on ORBIT-guided Phase I design efforts to create the first tailored adherence-promotion intervention for AYAs with cancer and the study protocol for the ongoing Phase II pilot feasibility trial. METHODS: Phase I design included qualitative interviews (n = 15 AYAs) to understand patient preferences for adherence-promotion care, development and refinement of a best-worst scaling exercise barriers tool (n = 5 AYAs), and development of intervention modules and a tailoring algorithm. In the ongoing Phase II pilot feasibility trial, AYAs (ages 15-24 years) with cancer currently taking oral chemotherapy or prophylactic medication will be recruited from three children's hospitals. Feasibility, acceptability, and usability will be assessed and these outcomes along with data on medication adherence will be used to inform the next phases of intervention development and testing. CONCLUSIONS: If promising, this program of research ultimately has the potential to equip clinicians with additional strategies for supporting adherence among AYAs with cancer. NCT05706610.

Relationship Between Caregiver Uncertainty, Problem-Solving, and Psychological Adjustment in Pediatric Cancer.

OBJECTIVE: The current study examined the roles of constructive and dysfunctional problem-solving strategies in the relationships between illness uncertainty and adjustment outcomes (i.e., anxious, depressive, and posttraumatic stress symptoms) in caregivers of children newly diagnosed with cancer. METHODS: Two hundred thirty-eight caregivers of children (0-19 years of age) newly diagnosed with cancer (2-14 weeks since diagnosis) completed measures of illness uncertainty, problem-solving strategies, and symptoms of anxiety, depression, and posttraumatic stress. RESULTS: A mediation model path analysis assessed constructive and dysfunctional problem-solving strategies as mediators between illness uncertainty and caregiver anxious, depressive, and posttraumatic stress symptoms. Dysfunctional problem-solving scores partially mediated the relationships between illness uncertainty and anxious, depressive, and posttraumatic stress symptoms. Constructive problem-solving scores did not mediate these relationships. CONCLUSIONS: The current findings suggest that illness uncertainty and dysfunctional problem-solving strategies, but not constructive problem-solving strategies, may play a key role in the adjustment of caregivers of children newly diagnosed with cancer. Interventions aimed at managing illness uncertainty and mitigating the impact of dysfunctional problem-solving strategies may promote psychological adjustment.

Implementation of the Psychosocial Standards for Caregiver Mental Health Within a Pediatric Hematology/Oncology Program.

The assessment of mental health needs and access to appropriate interventions for parents and caregivers is one of 15 evidence-based standards for the psychosocial care of children with cancer and their families. The objectives of this paper are to describe one program's approach to meeting this standard in oncologic, hematologic, and immunologic populations and outline key ethical, regulatory, and logistical considerations in providing mental health services to caregivers in a pediatric medical setting. A description of the Caregiver Mental Health Program (CMHP) is provided along with a case example to illustrate key considerations, including multiple family members needing care, access to psychiatric services, scope of treatment, confidentiality and privacy, and logistics. Challenges in the development of the CMHP as well as the program's benefits are discussed. Implementation of this standard of care will vary across institutions depending on various factors, such as staffing and programmatic resources and institutional culture.

Poor Adherence Is Associated with More Infections after Pediatric Hematopoietic Stem Cell Transplant.

We prospectively examined rates of outpatient oral medication adherence in children after hematopoietic stem cell transplant (post-HSCT). For 6 months after first discharge post-HSCT, 50 patients (aged 0 to 16 years) and their primary caregivers agreed to store 1 oral medication in an electronic pill bottle that date and time stamps each bottle opening. Demographics, disease, donor type, and prescribed post-HSCT medication regimen were collected via chart review. For each patient percent adherence was calculated by dividing the number of doses taken as indicated by the electronic pill bottle by the number of doses prescribed for the same time period. Average percent adherence ranged from 63% at 1 month after discharge to 57% at 6 months after discharge. For patients who received an allogeneic transplant, lower adherence was associated (P < .005) with higher infection rates, after controlling for age and time since transplant. No such relationship was observed for patients who received an autologous transplant. This study demonstrates that poor oral medication adherence is prevalent, persistent, and, for patients receiving an allogeneic transplant, associated with increased incidence of infections during the outpatient treatment period. This study highlights the need for further research examining factors that hinder medication adherence as well as monitoring, promoting, and intervening to maximize medication adherence throughout the HSCT course.

Meta-Analysis: Caregiver and Youth Uncertainty in Pediatric Chronic Illness.

Objective: To conduct a systematic review on the construct of illness uncertainty in caregivers and youth as related to the following: demographic and illness variables, psychological functioning, illness-related distress, and reaction/coping style. Methods: A meta-analysis was conducted with articles assessing the associations between illness uncertainty and variables of interest that were published between November 1983 and June 2016 ( n = 58). Results: Psychological functioning and illness-related distress had primarily medium effect sizes. Demographic and illness variables had small effect sizes. More positive and fewer negative reaction/coping styles were associated with less illness uncertainty, with primarily small effects. Conclusions: Illness uncertainty may be an important factor that influences psychological functioning and distress and coping in the context of pediatric chronic illness. However, additional research is needed to determine more precise mean effect sizes, as well as the potential efficacy of intervention to address uncertainty. adolescents, children, chronic illness, coping skills and adjustment, meta-analysis, parents, psychosocial functioning.

Designing Technology to Address Parent Uncertainty in Childhood Cancer.

The stress and uncertainty created by a child's cancer diagnosis and treatment can affect parent and child functioning. Health technology provides a potential avenue for intervention delivery. Interviews were conducted with parents of children diagnosed with cancer to discover their needs following diagnosis and design a relevant mobile application. Treatment experience was the overarching theme. Subthemes included the emotional response, use of information, and environmental factors. Technology was used primarily to seek out information and communicate with others. Health technologies are gaining popularity and have the potential to be beneficial for patients and families throughout the treatment experience.

Systematic and Meta-Analytic Review: Medication Adherence Among Pediatric Patients With Sickle Cell Disease.

OBJECTIVE: To provide a comprehensive summary (systematic review) of medication adherence rates by assessment method and medication type for pediatric patients with sickle cell disease (SCD), as well as identify important correlates for future research. METHODS: Articles assessing medication adherence and published between 1982 and February 2015 (n = 49) were identified using electronic databases. A meta-analysis of 14 studies examining demographic, medical, and psychosocial factors and medication adherence was conducted. RESULTS: Adherence rates ranged from 12% to 100% across all medications. Approximately 30% of studies reported associations between adherence and key demographic, medical, and psychosocial correlates. Mean effect sizes were small to moderate (r = .02-.53). CONCLUSIONS: The wide range of adherence rates reported in the literature may be because of, in part, the use of variable assessment strategies. Future studies examining pediatric SCD adherence should incorporate key correlates with the goal of replication.

Cultural influences in pediatric cancer from diagnosis to cure/end of life.

OBJECTIVE: To review the literature on cultural factors influencing clinical care and family management of pediatric cancer. METHODS: A literature review including 72 articles related to cultural issues in pediatric cancer was conducted. Information was organized around several clinically driven themes. RESULTS: Cultural factors influenced many aspects of the cancer experience including illness representations, reaction to diagnosis, illness disclosure patterns, complementary and alternative medicine use, management of medical procedures, coping strategies, and end of life issues. CONCLUSION: Increased awareness of cultural factors is needed to improve clinical care and reduce health disparities. Specific strategies to approach cultural differences are provided to enhance patient and family care from diagnosis to cure/end of life.