Jordan Gilleland

The transition of health care responsibility from parents to youth diagnosed with chronic illness: a developmental systems perspective.

With improved health care, increasing numbers of children and adolescents with chronic illness and disability now live into adulthood. With this change, the health care community needs to address problems related to the transition from parents caring for their young childrens needs to increasing health care responsibility being required of adolescents and young adults (AYA). The current article presents a conceptualization of relevant research related to the transition of health care responsibility from parent to AYA. Using a developmental systems perspective, representative literature on adolescent and dyad-level factors related to the transition of health care responsibility is reviewed to inform clinical practice and future intervention research. To identify the health care tasks that researchers have thus far considered as most important for successful transition, we review assessment measures in this area. The varying levels of agreement on transition of health care behaviors provide an index of current thought by experts in this field. Those behaviors consistently identified as key for successful transition of responsibility from parent to adolescent are outlined to inform future research and clinical practice.

Multidimensional Adherence Classification System: Initial development with adolescent transplant recipients

Abstract:  As transplantation has progressively become a more viable option for children with life‐threatening illness, ensuring that adolescents do not lose their new organ secondary to medication non‐adherence is paramount. The first step to addressing non‐adherence is adequate assessment of this construct. In this investigation, we introduce the MACS. The MACS includes self‐report and drug assay levels. Self‐report is a subjective measure with a low false‐positive rate, but is vulnerable to social desirability. Drug assays are an objective measure of drug ingestion, but values suggestive of non‐adherence may be influenced by medical complications and timing. The MACS builds on the strengths of both methods and attempts to contain their weaknesses. The sample in this study consisted of 82 adolescent solid organ transplant recipients. The non‐adherence rate using the MACS in this sample was 61%. Initial data to support this system are promising. The occurrence of rejection episodes and mortality were significantly related to membership in the Genuinely Non‐adherent category. Beyond providing initial support for the MACS, we discuss the clinical implications of this adherence classification system.

Brief Report: Psychosocial Factors and Pediatric Noncardiac Chest Pain

OBJECTIVE To investigate the associations between childrens perceived chest pain severity, somatization symptoms, depressive symptoms, anxiety sensitivity, and maternal somatization symptoms in children and adolescents with noncardiac chest pain (NCCP). METHODS Measures of chest pain and psychosocial functioning were collected from 35 participants (M age = 12.5 years, 54% female) with NCCP and their parents during evaluation at cardiology clinics. RESULTS Among children presenting for cardiac evaluations, wide variation in ranges of pain severity, episode frequency, and history were observed. Childrens somatic symptoms and fear of physiological arousal predicted significant variance in childrens chest pain severity. Additionally, childrens depressive symptoms and maternal somatization were both significant predictors of childrens somatic symptoms. CONCLUSIONS These results suggest NCCP may be part of a broader pattern of somatic responding and sensitivity to physiological arousal. This pattern is associated with both child and maternal functioning. Suggestions for future research are provided.

Assessment of family psychosocial functioning in survivors of pediatric cancer using the PAT2.0

This study aimed to examine clinical validity and utility of a screening measure for familial psychosocial risk, the Psychosocial Assessment Tool 2.0 (PAT2.0), among pediatric cancer survivors participating in long‐term survivorship care.

Factors Associated With Healthcare Utilization Among Children With Noncardiac Chest Pain and Innocent Heart Murmurs

OBJECTIVE To examine differences in factors related to health care utilization (HCU) among children eventually diagnosed with noncardiac chest pain (NCCP) or an innocent heart murmur (IHM). METHODS 67 pediatric patients with NCCP and 62 with IHM and their parent/guardian completed paper-and-pencil measures of psychological functioning and past HCU during an initial visit to the cardiologists office. RESULTS Children with NCCP utilized significantly more health care services compared to their IHM counterparts in the year prior to their cardiology visit. Children in the NCCP group had higher internalizing and somatic symptoms, and their parents experienced more anxious symptoms, than those in the IHM group. For the NCCP group only, child and parent psychological symptoms and parent HCU were positively related to child HCU. CONCLUSIONS Results identify possible child and parent psychological factors that may be the focus of interventions to reduce high rates of HCU among children with NCCP.

Initial Development of the Pediatric Camp Outcome Measure

The objective of this pilot study was to develop the Pediatric Camp Outcome Measure (PCOM), an instrument designed to assess childrens perception of the pediatric camp experience. Fifty-one children completed the PCOM at the end of a 1-week pediatric summer camp for individuals with complex heart defects. Participants also completed measures of anxiety, depression, and quality of life to provide support for the dimensions measured in the PCOM. The resultant 27-item, multidimensional instrument demonstrated strong internal consistency estimates for the total scale (α = .93) and each subscale (self-esteem, α = .84; emotional functioning, α = .84; socialization, α = .89; physical activity, α = .80). Initial support for the utility of the PCOM and the subscales was provided by significant correlations with concurrent measures of depression, anxiety, and general and cardiac-related quality of life. This study provides initial data and support for the use of the PCOM to measure childrens responses to pediatric specialty camps.

Health Care Utilization and Psychosocial Factors in Pediatric Noncardiac Chest Pain

OBJECTIVE This study investigated factors related to health care utilization (HCU) among patients presenting to pediatric cardiologists with symptoms of chest pain later diagnosed as noncardiac chest pain (NCCP). METHODS Participants included 67 children and adolescents diagnosed with NCCP and their parent. Measures of HCU, pain severity, and child self-report and parent self-report of anxiety and depression were collected at the cardiologists office. The childs sex was examined as a moderator of HCU. RESULTS Pain severity and maternal and child depression were significant contributors to the variance in child HCU. The relationship between depression and HCU was moderated by the childs sex, with boys higher in levels of maternal or child depression reporting greater HCU. CONCLUSIONS Psychological factors are related to HCU for children with NCCP, with depression positively associated with HCU. The childs sex plays an important role in depression and HCU. Family-focused psychological screening of pediatric patients with NCCP may aid in identifying families who may benefit from referrals for psychological assessment and treatment.

Internalizing Symptoms and Functional Disability in Children With Noncardiac Chest Pain and Innocent Heart Murmurs

OBJECTIVE To examine the occurrence of internalizing symptoms and functional disability in children with noncardiac chest pain (NCCP) compared with children with innocent heart murmurs (IHMs). METHOD 67 children with NCCP (M [SD] age = 12.61 [2.63]; 68.7% Caucasian) and 62 children with IHM (M [SD] age = 12.67 [2.62]; 50% Caucasian) were recruited from pediatric cardiology offices. Children and parents completed measures of psychological functioning and functional disability during a first visit to the cardiologist before diagnosis. RESULTS Children with NCCP reported greater levels of anxiety, depression, and anxiety sensitivity than children with IHM. Children with NCCP and their parents reported greater levels of functional disability and somatization than children with IHM and their parents. CONCLUSION Children with NCCP experience greater levels of psychosocial distress and impairment than similarly physically healthy children with IHM. Consideration of psychosocial influences on NCCP would likely be beneficial in aiding assessment and treatment.

Self-reported sleep problems in adolescent survivors of childhood cancer.

BACKGROUND Although sleep problems are common among adult cancer survivors, little is known about sleep problems in adolescent survivors of childhood cancer (ASCC). OBJECTIVES This study sought to describe (a) the prevalence of self-reported sleep problems among ASCC before treatment, during treatment, following treatment, and in survivorship follow-up; (b) the relationship between sleep problems and self-reported adverse psychosocial outcomes; and (c) the relationship between sleep problems, treatment, and disease. METHODS Baseline surveys were received from 173 ASCC aged 13-19 years. Chi-square analyses and odds ratios were used to determine associations between sleep problems and adverse psychosocial outcomes and treatment-related variables. FINDINGS Sleep problems were reported before treatment (6%), during treatment (18%), after treatment (15%), and at present (11%). ASCC reporting sleep problems reported more adverse psychosocial outcomes than those without. Significant associations (p ≤ 0.05) between sleep problems and difficulty in school were identified at all time points. Sleep problems were associated with depressive symptoms, memory problems, and anxiety during and after treatment and at present.