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Hematopoietic stem cell transplant (HSCT) is a treatment for pediatric patients with a wide range of serious immunological, hematological and oncological diagnoses. The first 6- to 7-months post-HSCT is a critical period during which children are most at risk for life-threatening infections and graft versus host disease (GVHD). To prevent these serious complications, an intense prophylactic oral medication regimen is prescribed. Non-adherence to this regimen results in suboptimal drug exposure increasing the patient’s risk of these post- transplant complications. Despite this, there are no rigorous scientific studies documenting the modifiable factors that predict non-adherence or how NA impacts HSCT outcomes.
We currently have two studies that will identify factors influencing adherence in pediatric and adolescent/young adult HSCT. The HOME Study will recruit 254 caregivers of children ages ≤ 12 years to complete online questionnaires at discharge, 1-, 3-, 5-, and 7-months post-discharge. The HERO Study will recruit 110 patients ages 13-25 and their caregivers to complete questionnaires at discharge, 1-, 3-, 6-, and 9-months post-discharge. Both studies will assess factors expected to be associated with NA prior to the patient’s discharge. The data from these studies will provide the fundamental knowledge that is needed to develop time- and treatment-specific behavioral and systems-based adherence interventions that will optimize the delivery and efficacy of medical treatments.
Illness uncertainty refers to the experience of illness-related events that are unpredictable, ambiguous, and/or complex in nature. For children with cancer and their parents illness uncertainty is ubiquitous as they are suddenly and repeatedly confronted with ambiguous physical symptoms, complex treatment regimens and – most fundamentally – unpredictability regarding the child’s survival. Illness uncertainty is also a consistent and robust predictor of psychological distress. Therefore, the inherent uncertainty of pediatric cancer places both children with cancer and their parents at increased risk for psychological distress e.g., depression, post-traumatic stress symptoms (PTSS) for years following diagnosis and treatment. To date no study exists that provides a psychosocial intervention to parents of children newly diagnosed with cancer and also asses the effect on child psychological functioning.
The proposed trial will test the efficacy of the parent-focused clinic-based Parent Uncertainty Management Intervention (PUMI) to improve the outcomes of children newly diagnosed with cancer and their parents. Two hundred and ninety-six parents of children between two and 18 years of age will be randomly assigned to receive equivalent doses of either the PUMI or an Education/Support (ESO) group. Theoretically driven by Mishel’s model of illness uncertainty, the PUMI will teach parents about uncertainty prevention and management through the use of medically-specific communication, information management, and problem-solving skills via in-clinic sessions and an online portal. Parents and children (> 8 years-old) will complete measures online at baseline, 1-week, and 3-, 6-, and 12-month follow-ups.
Identifying factors associated with ongoing distress for children undergoing hematopoietic stem cell transplant and their families is recommended to facilitate care and assure timely provision of evidence based psychosocial care. There are commonalities among psychosocial risk factors and health disparities (e.g. resource limitations, socioeconomic status, social support, family problems, and illness beliefs). Identifying these factors early in treatment in a psychometrically rigorous manner can contribute to the reduction of health disparities by connecting families to needed psychosocial resources and interventions. Brief, theoretically grounded user-friendly screening measures that are validated for families of children undergoing hematopoietic stem cell transplant (HSCT) are not currently available.
We will address potential disparities by establishing a measure - the Psychosocial Assessment Tool (PAT) - as a valid screener of psychosocial risk for families of children undergoing bone marrow transplant (BMT) over the course of pediatric BMT treatment. The PAT was based on a conceptual model of risk and its implications for care in pediatric cancer – the Pediatric Preventative Psychosocial Health Model. It includes brief screening of child (and sibling) and family factors/domains known to be associated with ongoing or escalating distress (e.g., resource considerations, socioeconomic status, child and sibling developmental and behavioral problems, and family problems, illness-related beliefs).
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