Bonnie S. Essner

The Economic Costs of Chronic Pain Among a Cohort of Treatment-Seeking Adolescents in the United States

UNLABELLED The aim of this study was to assess the economic cost of chronic pain among adolescents receiving interdisciplinary pain treatment. Information was gathered from 149 adolescents (ages 10-17) presenting for evaluation and treatment at interdisciplinary pain clinics in the United States. Parents completed a validated measure of family economic attributes, the Client Service Receipt Inventory, to report on health service use and productivity losses due to their childs chronic pain retrospectively over 12 months. Health care costs were calculated by multiplying reported utilization estimates by unit visit costs from the 2010 Medical Expenditure Panel Survey. The estimated mean and median costs per participant were

Trajectories of Psychosocial Adjustment in Adolescents with Spina Bifida: A 6-Year, Four-Wave Longitudinal Follow-up.

11,787 and

Mother–Adolescent Agreement Regarding Decision-Making Autonomy: A Longitudinal Comparison of Families of Adolescents with and without Spina Bifida

6,770, respectively. Costs were concentrated in a small group of participants; the top 5% of those patients incurring the highest costs accounted for 30% of total costs, whereas the lower 75% of participants accounted for only 34% of costs. Total costs to society for adolescents with moderate to severe chronic pain were extrapolated to

Examination of the Factor Structure of the Adolescent Sleep-Wake Scale (ASWS).

19.5 billion annually in the United States. The cost of adolescent chronic pain presents a substantial economic burden to families and society. Future research should focus on predictors of increased health services use and costs in adolescents with chronic pain. PERSPECTIVE This cost of illness study comprehensively estimates the economic costs of chronic pain in a cohort of treatment-seeking adolescents. The primary driver of costs was direct medical costs followed by productivity losses. Because of its economic impact, policy makers should invest resources in the prevention, diagnosis, and treatment of chronic pediatric pain.

The Influence of Condition Parameters and Internalizing Symptoms on Social Outcomes in Youth With Spina Bifida

OBJECTIVE As a follow-up to an earlier cross-sectional study (Holmbeck et al., 2003), the current multimethod, multi-informant investigation examined individual growth in psychosocial adjustment across the adolescent transition in 2 samples: young adolescents with spina bifida (SB) and typically developing adolescents (N = 68 in both groups at Time 1). METHOD Growth curve modeling procedures were used to describe the developmental course of psychosocial adjustment across 4 waves of data collection from ages 8 to 15. Child gender was included in the models as a moderator of associations between illness status and adjustment trajectories. RESULTS AND CONCLUSIONS Findings revealed that preadolescent differences between groups were maintained for several adjustment variables, indicating that adolescents with SB have enduring academic and attention problems and difficulties with social development (e.g., fewer friends and less influence during family interactions). For other outcomes, trajectories of adjustment levels for adolescents with SB converged on levels observed in comparison adolescents, indicating some areas of resilience. Girls with SB were at risk for increasing levels of social difficulties and negative perceptions of their physical appearance. Clinical implications are discussed.

The Complex Needs of Pediatric Hematopoietic Stem Cell Donors and Their Families: Challenges and Opportunities.

OBJECTIVE Longitudinal comparison of mother and adolescent agreement regarding decision-making autonomy for adolescents with and without spina bifida (SB). METHODS Forty-two mother-adolescent dyads of adolescents with SB and 55 comparison dyads reported on who was responsible for decision-making across five waves of data collection, beginning at age 8 or 9 years through age 16 or 17 years. RESULTS The proportion of tasks that dyads agreed were decided by adolescents increased over time for both samples beginning at age 12 or 13 years, but appeared to be delayed by roughly two years for youth with SB and was lower for youth with SB from lower socioeconomic (SES) backgrounds. Mothers and adolescents with low SES demonstrated higher proportions of tasks that dyads agreed were decided by mothers. CONCLUSIONS SB and low SES are risk factors for lower levels of agreed-upon decision-making autonomy. Future studies should examine how parent-adolescent agreement regarding autonomy relates to psychosocial outcomes.

When Helping Hurts: Miscarried Helping in Families of Youth With Chronic Pain

This study examined the factor structure of the Adolescent Sleep–Wake Scale (ASWS) among 491 adolescents (12–18 years) with and without pediatric health conditions. Exploratory factor analyses were conducted using iterated principal axis factoring with varimax rotation. Highly cross-loading items were systematically removed and analyses were rerun until a clean solution was attained. The final solution explained 57.1% of the total model variance, including 10 items and three factors: Falling Asleep and Reinitiating Sleep-Revised, returning to Wakefulness-Revised, and Going to Bed-Revised. Internal consistency reliability scores were acceptable to good, with the exception of the Going to Bed-Revised subscale for the healthy sample. Adolescents with chronic pain reported significantly poorer overall sleep quality and more problems in falling asleep, reinitiating sleep, and returning to wakefulness as compared to healthy adolescents, providing preliminary evidence for construct validity of the new factors. The resulting ASWS version is a concise assessment tool with empirically derived, distinct behavioral sleep dimensions that can be used for clinical and research purposes.

Adaptation of Problem-Solving Skills Training (PSST) for Parent Caregivers of Youth with Chronic Pain.

OBJECTIVE To test a model of social competence in youth with spina bifida (SB). Involvement in social activities was expected to mediate associations between SB-related condition parameters (pain, body mass index, and motor function) and social competence. Internalizing symptoms were predicted to amplify the negative impact of condition parameters on social activity involvement. METHODS 108 youth with SB, their caregivers, peers, and teachers participated in a multimethod study that included cognitive testing, questionnaires, and observational interaction tasks. RESULTS Social activity involvement partially mediated the relation between pain and lower social competence. Internalizing symptoms had a significant indirect effect on social competence via decreased involvement in social activities. CONCLUSIONS Pain and internalizing symptoms interfere with social activity involvement, which is, in turn, important for social competence development in youth with SB. Assessing and treating these condition parameters and activity factors may be important areas of focus in clinical practice and research with these youth.

A developmental analysis of the factorial validity of the parent-report version of the adult responses to children's symptoms in children versus adolescents with chronic pain or pain-related chronic illness

Children who donate stem cells or bone marrow to a sibling undergo a medical procedure that offers them no direct medical benefit and that subjects them to more-than-minimal risk. This unique situation is deserving of the kind of thoughtful analysis the American Academy of Pediatrics provided in its 2010 policy statement, which elucidated the ethical considerations regarding pediatric donation and defined appropriate precautions to ensure informed consent, minimization of risk, and advocacy for the child donor. It is only fitting that the scientific andmedical community take an equally thoughtful approach to understanding and meeting the needs of these young donors, both in the short and long term. The report by Switzer et al, published in this volume of The Journal, advances our understanding of pediatric donor experiences by documenting health-related quality of life (HRQoL), as reported by donor siblings and parent proxies, at 3 time points: before donating, 4 weeks after donating, and finally at 1 year after donating. Like so many findings in social science research, the results are complex, and our attempts to interpret the findings spur further questions. Overall, this sample of 105 children and adolescents who donated stem cells at transplant centers across the US showed considerable resilience: their HRQoL at all time points did not reach the Minimal Clinically Important Difference (as defined by Pediatric Quality of Life Inventory [PedsQL] developers) compared with normative groups; however, a sizable proportion (20%) had clinically important HRQoL deficits at each time point, and the youngest children (ages 5-7 years) were clearly the most vulnerable, with the largest percentage of donors with low HRQoL at all time points and declining HRQoL over time. For older children, HRQoL was lower than age-, sex-, race-, and ethnicity-matched norms predonation, declined slightly at 4 weeks postdonation, and then improved at 1 year postdonation to near-normal levels. In a multivariable analysis, predonationHRQoL and younger donor age predicted lower HRQoL at 1 year postdonation. The parents of these pediatric donors tended to overestimate their child’s HRQoL. In fact, parents mistakenly believed that younger age was a psychological protective factor and made the donation process easier. The results by Switzer et al counter that perception, raising awareness for families and transplant professionals of just how vulnerable these younger donors are. This finding holds considerable significance for current practice and may become even more important as pediatric stem cell transplants performed with infant and toddler donors conceived through preimplantation genetic diagnosis and human leukocyte antigen matching become more common. Switzer et al appropriately acknowledge that a major limitation of their study is the inability to distinguish between the effect of being the sibling of a seriously ill child and that of being a stem cell donor. Although clearly a great deal more research in this area is needed, a growing body of evidence from both quantitative and qualitative studies documents a range of adaptive and nonadaptive psychosocial outcomes for nondonor siblings of pediatric patients with cancer. Sibling adjustment appears to be mediated in a complex fashion by factors including family cohesion and adaptability, family disruption, family support resources, and intrafamilial communication. Beyond the world of cancer, siblings of children with physical chronic health conditions (including cystic fibrosis and epilepsy) tend to have better HRQoL than their chronically ill brother or sister and HRQoL comparable (sometimes worse, occasionally better) with healthy controls. In these families, greater disease severity in the chronically ill child emerged as a risk factor for impaired functioning in siblings. The report by Switzer et al leaves significant questions about how pediatric stem cell transplant affects each member of the family and how that experience interacts with other sources of familial stress. Perhaps even more important are residual questions about how best to support family members of patients undergoing transplantation, including donor and nondonor siblings. Children undergoing stem cell transplantation have a lifethreatening disease, and they undertake a treatment that is also life threatening. Every member of the family is affected by this incredible stress in different ways, and for the sibling who donates stem cells, the experience is even more complicated. They are asked to undergo a procedure that entails some degree of discomfort and certain inconvenience. To decline to donate is not a real option under most circumstances, and although presumably most siblings are eager to do anything they can to save their brother or sister’s life, others may feel pressured or manipulated. They also may feel an astounding amount of responsibility and are at risk for crushing guilt should the graft fail or their sibling not survive. For all these reasons, the American Academy of Pediatrics has recommended that a donor advocate, separate from the patient’s medical team, be involved from an early point in the process. The advocate (or an equivalent mechanism) serves to protect the best interests of the healthy child by ensuring that the risks of donation are minimized, the potential emotional benefits of donating are optimized, the child is included in the