Pretransplant patient, parent, and family psychosocial functioning varies by organ type and patient age.

The goal of this study was to compare pretransplant patient HRQOL, parent psychological functioning, and the impact of the patient's ongoing illness on the family between organ types (ie, kidney, liver, heart) and age-groups (ie, children, AYAs). The sample included 80 pediatric patients with end-stage organ disease who were evaluated for transplantation and their parents. Parents completed self- and proxy reports at patients' pretransplant evaluations. Results indicated that patients evaluated for heart transplants consistently had lower HRQOL and their parents had greater psychological distress compared to the kidney and liver groups. Within the heart group, parents and families of children (<12 years old) experienced significantly more distress and impact of the patient's illness on the family compared to those of AYAs (≥12 years old). Pediatric patients awaiting heart transplants, particularly younger children, and their parents and families may have greater psychosocial needs compared to patients awaiting kidney or liver transplants.

Predictors of health-related quality of life over time among pediatric hematopoietic stem cell transplant recipients.

BACKGROUND: Advances in hematopoietic stem cell transplantation (HSCT) have contributed to increased survival for pediatric patients. However, there are inconsistent findings regarding the impact of HSCT on health-related quality of life (HRQOL) outcomes for children. This study aimed to establish trajectories of HRQOL following HSCT and identify predictors of the HRQOL course. PROCEDURE: Ninety caregivers of a child who received HSCT (mean age = 6.42 years) for various oncologic, immunologic, and metabolic conditions completed questionnaires regarding family psychosocial functioning and child HRQOL at the time of discharge from HSCT and follow-up HRQOL at four additional time points. RESULTS: There was a significant change in overall HRQOL in 3 months postdischarge, with the greatest improvement in physical functioning. Caregiver stress and social support, and child psychosocial problems predicted changes in HRQOL over time. CONCLUSIONS: These results point to potentially modifiable factors that are related to the course of HRQOL following HSCT, and interventions aimed at these factors should be implemented.

Trajectories of Health-Related Quality of Life Among Children With Newly Diagnosed Epilepsy.

OBJECTIVE: To identify two-year trajectories of health-related quality of life (HRQOL) among children with newly diagnosed epilepsy, and evaluate key predictors of HRQOL trajectories. METHODS: This study is part of a prospective study of adherence and HRQOL outcomes in children with epilepsy. Caregivers completed an HRQOL questionnaire at one month post diagnosis and every three months thereafter for two years. Chart review and additional questionnaires were used to collect medical variables and seizure outcomes. RESULTS: Participants included 120 children with epilepsy and their caregiver. Unique trajectories for overall HRQOL and PedsQL™ subscales were identified and were predominantly stable. A total side effects score emerged as a consistent predictor of all HRQOL domains. Other variables (i.e., socioeconomic status, seizures, internalizing and externalizing problems) uniquely predicted HRQOL domains. CONCLUSIONS: Medical and psychosocial interventions should be implemented soon after treatment initiation to target modifiable factors (e.g., side effects, anxiety symptoms), which could improve HRQOL.

Predictors of trajectories of epilepsy-specific quality of life among children newly diagnosed with epilepsy.

OBJECTIVE: The objective of this study was to identify two-year trajectories of epilepsy-specific health-related quality of life (HRQOL) among children newly diagnosed with epilepsy and to evaluate the predictive value of a comprehensive set of medical, psychosocial, and family factors. METHODS: Ninety-four children with epilepsy (8.14 ± 2.37 years of age and 63% male) and their caregivers participated in this study. Caregivers completed the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE) and measures of psychological and family functioning at one month postdiagnosis. The QOLCE was also given at eight additional time points during the subsequent two years as a part of a large observational study in children with epilepsy. Adherence data were collected via MEMS TrackCaps, and medical information was collected through chart review. RESULTS: Unique trajectories were identified for the overall QOLCE scale, as well as the subscales. Most trajectory models for the QOLCE subscales contained at least one at-risk trajectory for children, indicating that there is a subgroup of children experiencing poor long-term HRQOL. Health-related quality-of-life trajectories remained predominantly stable during the two-year period following treatment initiation. The number of AEDs, internalizing problems, and externalizing problems emerged as the most consistent predictors across the HRQOL domains. SIGNIFICANCE: Medical and psychosocial interventions, such as cognitive-behavioral strategies, should target modifiable factors (e.g., internalizing symptoms, externalizing symptoms, number of AEDs trialed) shortly after diagnosis to improve HRQOL for children with epilepsy over the course of their disease.

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.

Executive Functioning, Barriers to Adherence, and Nonadherence in Adolescent and Young Adult Transplant Recipients.

OBJECTIVE : To evaluate levels of executive functioning in a sample of adolescent and young adult (AYA) transplant recipients, and to examine executive functioning in association with barriers to adherence and medication nonadherence. METHOD : In all, 41 caregivers and 39 AYAs were administered self- and proxy-report measures. RESULTS : AYA transplant recipients have significant impairments in executive functioning abilities. Greater dysfunction in specific domains of executive functioning was significantly associated with more barriers to adherence and greater medication nonadherence. CONCLUSION : AYA transplant recipients are at increased risk for executive dysfunction. The assessment of executive functioning abilities may guide intervention efforts designed to decrease barriers to adherence and promote developmentally appropriate levels of treatment responsibility.

Quality of Life Changes and Health Care Charges Among Youth With Epilepsy.

OBJECTIVE: To examine differences in health care charges following a pediatric epilepsy diagnosis based on changes in health-related quality of life (HRQOL). METHODS: Billing records were obtained for 171 youth [M (SD) age = 8.9 (4.1) years] newly diagnosed with epilepsy. Differences in health care charges among HRQOL groups (stable low, declining, improving, or stable high as determined by PedsQL(™) scores at diagnosis and 12 months after diagnosis) were examined. RESULTS: Patients with persistently low or declining HRQOL incurred higher total health care charges in the year following diagnosis (g = .49, g = .81) than patients with stable high HRQOL after controlling for epilepsy etiology, seizure occurrence, and insurance type. These relationships remained consistent after excluding health care charges for behavioral medicine or neuropsychology services (g = .49, g = .80). CONCLUSIONS: Monitoring HRQOL over time may identify youth with epilepsy at particular risk for higher health care charges.

Behavioral predictors of medication adherence trajectories among youth with newly diagnosed epilepsy.

OBJECTIVE: This study aimed to identify psychosocial predictors of two-year antiepileptic drug (AED) adherence trajectories among youth with newly diagnosed epilepsy, controlling for known demographic and medical factors. METHOD: This study is part of a large, prospective, longitudinal observational study of AED adherence and medical outcomes in youth with newly diagnosed epilepsy. Parents completed questionnaires of psychosocial and family functioning at one month and one year following diagnosis. Chart review and questionnaires were used to collect medical variables and seizure outcomes. Previously established two-year AED adherence trajectories (Severe Early Nonadherence, Variable Nonadherence, Moderate Nonadherence, High Adherence) were used as the outcome variable. RESULTS: Participants were 91 parents of youth with epilepsy (7.3±2.8years of age; 60% male) and their families. Early (one month following diagnosis) predictors of two-year adherence trajectories included socioeconomic status, epilepsy knowledge, family problem-solving, and family communication. Significant predictors one year following diagnosis included socioeconomic status, parent fears and concerns, and parent life stress. CONCLUSION: There are modifiable parent and family variables that predict two-year adherence trajectories above and beyond known medical (e.g., seizures, side effects) factors. Psychosocial interventions delivered at key points during the course of epilepsy treatment could have a positive impact on adherence outcomes.

Longitudinal stability of medication adherence among adolescent solid organ transplant recipients.

Solid organ transplantation requires ongoing adherence to immunosuppressants and other medications. Although adolescence is a risk factor for poor medication-taking, little is known about the patterns of adherence within individuals over time. This study aimed to examine the stability of adherence over time using three different assessment techniques. Sixty-six AYA transplant recipients and/or their caregiver completed interviews of adherence at baseline and at least one yr later. Serum immunosuppressant assay levels were collected via medical chart review. Non-adherence percentages based on AYA report, caregiver report, and bioassay did not differ from Time 1 to Time 2. However, correlations for these measures across time were non-significant. Further, the majority of AYAs shifted to a different adherence category from Time 1 to Time 2. Overall, these results demonstrate individual variability in non-adherence over the course of adolescence and young adulthood and highlight the importance of frequent assessment across time for solid organ transplant recipients.

Health related quality of life and social support in pediatric patients with pacemakers.

Prior research evaluating health-related quality of life (HRQOL) among pediatric patients with internal cardiac devices has primarily focused on children with cardiac defibrillators, with scant attention devoted to pacemaker recipients. Social support has been conceptualized as a protective factor that partially accounts for differences in HRQOL. This study compares the HRQOL of children with pacemakers with that of healthy children, and examines associations between HRQOL and social support. Twenty-seven pediatric pacemaker recipients completed measures of HRQOL and social support. Their parents also completed measures of child HRQOL. High concordance was found for child and parent-proxy reports of child HRQOL. Children with pacemakers and their parents both reported relatively low child HRQOL when compared to published normative data for healthy children and parents of healthy children. Family and friends emerged as the sources of support positively associated with the greatest number of HRQOL domains. In conclusion, these findings suggest that pediatric pacemaker recipients experience lower levels of HRQOL compared to healthy peers, and that social support from those closest to the child is associated with their perceived HRQOL.

Pediatric psychologist use of adherence assessments and interventions.

OBJECTIVE: To document current clinical practices for medical regimen adherence assessment and intervention in the field of pediatric psychology. METHODS: 113 members of the Society of Pediatric Psychology completed an anonymous online survey that assessed use of adherence assessments and interventions in clinical practice, barriers and facilitators to their use, and preferred resources for obtaining information on adherence assessments and interventions. RESULTS: Respondents reported using a range of adherence assessment and intervention strategies, some of which are evidence-based. Barriers to implementing these clinical strategies included time constraints and lack of familiarity with available clinical tools. Respondents reported that education about effective clinical tools would facilitate their use of adherence assessments and interventions. CONCLUSIONS: Future research and clinical efforts in adherence should consider developing practical tools for clinical practice, making accessible resources to promote dissemination of these tools, and increase understanding of clinician implementation of adherence assessments and interventions.

Health-related quality of life and perceived need for mental health services in adolescent solid organ transplant recipients.

The purpose of the current investigation was to assess interest in mental health services among parents of adolescent solid organ transplant recipients and the relationship between parent perceived need for mental health services and patient health-related quality of life (HRQOL). Sixty-three parents rated interest in receiving 10 mental health services, and patient HRQOL ratings were gathered from adolescent transplant recipients and their parents. Ninety-four percent of parents expressed some level of interest in at least one of the proposed services, with over 40 % indicating maximum interest. Parents' perceived need for mental health services was inversely related to adolescent and parent reports of HRQOL on the behavior, mental health, family cohesion, and parental impact-emotional domains. Results suggest that parents of adolescent solid organ transplant recipients are interested in receiving mental health services for their families. Assessment of need for mental health services and HRQOL may inform the medical team of families requiring intervention.

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 cardiologist's 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.

Posttraumatic growth associated with a relative's serious illness.

Posttraumatic growth (PTG) involves personal psychological growth in response to a traumatic or very stressful event. Using theoretical guidance from Tedeschi and Calhoun's cognitive model, this study evaluated the relationship between specific individual, distress, and stress-processing factors and PTG among young adults who experienced an illness-related trauma earlier in life through a relative's serious illness. Sixty individuals with a relative with a serious illness completed measures of PTG, posttraumatic stress symptoms (PTSS), anxiety, and coping. PTG was positively associated with trait anxiety, PTSS, and the use of active, problem-focused coping strategies. Factors associated with PTG development in individuals who have a relative with a chronic illness are similar to that of individuals who had a serious illness themselves. The relationship between PTSS and PTG is moderated by whether the relative's current illness status is resolved versus not resolved. (PsycINFO Database Record (c) 2011 APA, all rights reserved).

A pilot study evaluating an abbreviated version of the cognitive remediation programme for youth with neurocognitive deficits.

PRIMARY OBJECTIVE: To determine the effectiveness of an abbreviated version of an established cognitive remediation programme for children with neurological disorders and attention problems in an outpatient setting. METHODS AND PROCEDURES: Eighteen 6-15-year-old children diagnosed with neurological and attention difficulties completed a six-module training programme aimed at improving attention. This programme was a shorter version of the Cognitive Remediation Programme (CRP), which has been successfully implemented with children with neurocognitive deficits. Parents completed measures of their children's attention and children completed neuropsychological measures of attention. MAIN OUTCOMES AND RESULTS: The programme was associated with improvement in several aspects of parent-reported attention and children's performance on tasks measuring attention. CONCLUSIONS: The shortened version of the CRP shows promise as a brief treatment for attention problems in outpatient neurological populations. Future research should assess programme effectiveness using a control group, longer-term follow-up and teacher reports.

Predictors of long-term health-related quality of life in adolescent solid organ transplant recipients.

OBJECTIVES: This study aimed to identify prospective predictors of health-related quality of life (HRQOL) for adolescent solid organ (kidney, liver, heart, lung) transplant recipients. METHODS: Data regarding demographics, individual/transplant characteristics, and environmental characteristics were gathered from 66 adolescent transplant recipients and their families at baseline and used to predict the physical functioning, mental health, and general health perceptions domains of HRQOL 18 months later. RESULTS: Baseline levels of HRQOL explained the greatest amount of variance in levels of HRQOL at follow-up; however, specific demographic (i.e., income), individual/transplant (i.e., adherence, frequency of rescheduled clinic appointments, and presence of a rejection episode), and environmental factors (i.e., family conflict) contributed to the variance in HRQOL domains beyond baseline levels. CONCLUSIONS: This study identified certain modifiable individual and environmental factors and non-modifiable risk factors associated with lower future HRQOL. Transplant centers should begin screening and addressing these factors to potentially improve HRQOL.

Posttraumatic growth in young adults who experienced serious childhood illness: a mixed-methods approach.

Sixty young adult survivors of a serious childhood illness completed quantitative and qualitative measures assessing the relationship between specific disease and distress factors and posttraumatic growth (PTG). Individuals who had recovered from their illness reported greater growth than those who were currently experiencing their illness. The regression model accounted for 47% of the variance in PTG, with perceived severity, illness status, and posttraumatic stress symptoms emerging as significant predictors. Qualitative analyses identified salient positive and negative factors associated with having had an illness, such as a positive shift in perspective and frequent medical requirements. Being past the daily demands of illness management may allow for greater PTG. Realization of positive aspects of having had an illness may require prompting.

Use of low-dose ketamine infusion for pediatric patients with sickle cell disease-related pain: a case series.

OBJECTIVES: Sickle cell disease-related pain is difficult to treat adequately. Pain secondary to vasoocclusive episodes (VOE) may be unresponsive to high-dose intravenous opiates. Alternative treatment options for VOE are needed. We sought to review our experience with low-dose ketamine for children hospitalized with VOE. METHODS: Retrospective medical chart reviews were conducted for hospitalized patients treated with ketamine for sickle cell VOE. Data gathered included vital signs, pain scores, opiate utilization, and adverse events. RESULTS: Five children and adolescents received a low-dose ketamine infusion for the treatment of sickle cell-related pain. Four received the infusion in addition to opiates (delivered via patient controlled analgesia) as a rescue intervention after several days of inadequate pain relief and 1 patient received ketamine in place of opiates. Two of the 5 patients achieved what seems to be clinically significant pain control with a low-dose ketamine infusion, whereas 1 additional patient had significant reduction in opiate utilization. DISCUSSION: Further research into ketamine for vasoocclusive pain is warranted.

Do children with sickle cell disease receive disparate care for pain in the emergency department?

BACKGROUND: There may be disparities in pain management practice in the emergency department (ED) for sickle cell disease patients (SCD) with vaso-occlusive episodes (VOE). OBJECTIVES: To compare pain management practice for children who presented to the ED with VOE to those with isolated long bone fractures (LBF). METHODS: Children who presented with a VOE or a LBF to a children's hospital ED during 2005 were included. A retrospective medical chart review was conducted for each patient visit. Data collected included demographics, pain scores, time from triage to analgesia, and analgesic intervention. RESULTS: Seventy-seven patients with SCD had 152 visits to the ED for pain, and 219 patients had 221 visits for LBF. Fifty-five patients (108 visits) with SCD and 123 patients (124 visits) with LBF received opiates. Subsequent analysis was done on these groups. Patients with SCD were older, less likely to be male and more likely to be African-American than the LBF group. Patients with SCD had higher triage pain scores (7.7 ± 2.5 vs. 6.7 ± 3.0, p = 0.005) and spent less time in the waiting room (7.4 ± 9.0 vs. 12.1 ± 26.8 min, p = 0.10), were given higher initial opiate doses (0.09 ± 0.03 vs. 0.07 ± 0.03 mg/kg morphine, p < 0.001); however, time from triage to analgesic intervention did not differ (69.0 ± 42.6 vs. 70.4 ± 57.1 min, p = 0.92). CONCLUSIONS: No disparities in care for children with sickle cell pain were identified. More timely administration of opiates needs to be encouraged, assuming other factors such as time of day, ED census, and acuity permit.

Behavioural assessment of pediatric pain.

Behavioural assessment methods have been used to signal the need for intervention and to evaluate treatment effectiveness. Direct observation and rating scales have been used to assess pain and distress associated with acute medical procedures, postoperative pain, critical care, analogue pain induction procedures and other sources. Two recent scholarly reviews of behavioural assessment methods were conducted by the Society of Pediatric Psychology Evidence-Based Assessment Task Force and the Pediatric Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials, which classified various instruments as well established, approaching well established or promising. The characteristics of the eight behavioural assessment scales that were recommended by one of these task forces are further reviewed in the present paper. The results indicate that behavioural assessment scales have been used flexibly to assess pain in a wide variety of situations, across different pediatric populations and for patients of different ages. In the present review, there appears to be no basis for designating the scales as measures of distress versus pain; both emotional and sensory components of pain seem to be assessed by each of the scales. There is considerable overlap among the behavioural indicators of pain used in the different scales. Furthermore, the behavioural codes indicative of pain may occur before, during and after painful events. Recommendations for future research are provided, including using behavioural assessment to focus on children's coping and adults' behaviours, as well as pain.