Gary Maslow

Growing Up With a Chronic Illness: Social Success, Educational/Vocational Distress

OBJECTIVES We compared adult educational, vocational, and social outcomes among young adults with and without childhood-onset chronic illness in a nationally representative U.S. sample. METHODS We used data from Wave IV (2008) of the National Longitudinal Study of Adolescent Health. We compared respondents who reported childhood-onset cancer, heart disease, diabetes, or epilepsy with young adults without these chronic illnesses in terms of marriage, having children, living with parents, romantic relationship quality, educational attainment, income, and employment. Multivariate models controlled for sociodemographic factors and adult-onset chronic illness. RESULTS As compared with those without childhood chronic illness, respondents with childhood chronic illness had similar odds of marriage (odds ratios [OR] = .89, 95% CI: .65-1.24), having children (OR = .99, 95% CI: .70-1.42), and living with parents (OR = 1.49, 95% CI .94-2.33), and similar reports of romantic relationship quality. However, the chronic illness group had lower odds of graduating college (OR = .49, 95% CI: .31-.78) and being employed (OR = .56, 95% CI: .39-.80), and higher odds of receiving public assistance (OR = 2.13, 95% CI: 1.39-3.25), and lower mean income. CONCLUSIONS Young adults growing up with chronic illness succeed socially, but are at increased risk of poorer educational and vocational outcomes.

Young Adult Outcomes of Children Growing up with Chronic Illness: An analysis of the National Longitudinal Study of Adolescent Health

OBJECTIVE To examine young adult outcomes in a nationally representative US cohort of young adults growing up with a chronic illness. DESIGN Secondary analysis of nationally representative data from wave III (in 2001) of the National Longitudinal Study of Adolescent Health. SETTING United States. PARTICIPANTS The analytic sample comprised 13 236 young adults aged 18 to 28 years at wave III. MAIN EXPOSURE Self-report of a chronic physical illness (asthma, cancer, diabetes mellitus, or epilepsy) in adolescence. Respondents with asthma or nonasthmatic chronic illness (cancer, diabetes mellitus, or epilepsy) were compared with individuals without these conditions. MAIN OUTCOME MEASURES Self-report of high school graduation, ever having employment, currently having employment, living with a parent/guardian, and ever receiving public assistance. RESULTS Three percent of young adults had nonasthmatic chronic illness (cancer, diabetes, or epilepsy), and 16.0% had asthma. Most young adults with chronic illness graduated high school (81.3%) and currently had employment (60.4%). However, compared with healthy young adults, those with nonasthmatic chronic illness were significantly less likely to graduate high school, ever have had employment, or currently have employment and were more likely to receive public assistance. Compared with young adults with asthma, those with nonasthmatic chronic illness again had significantly worse young adult outcomes on all measures. CONCLUSIONS Most young adults growing up with a chronic illness graduate high school and have employment. However, these young adults are significantly less likely than their healthy peers to achieve these important educational and vocational milestones.

International and Interdisciplinary Identification of Health Care Transition Outcomes

IMPORTANCE There is a lack of agreement on what constitutes successful outcomes for the process of health care transition (HCT) among adolescent and young adults with special health care needs. OBJECTIVE To present HCT outcomes identified by a Delphi process with an interdisciplinary group of participants. DESIGN, SETTING, AND PARTICIPANTS A Delphi method involving 3 stages was deployed to refine a list of HCT outcomes. This 18-month study (from January 5, 2013, of stage 1 to July 3, 2014, of stage 3) included an initial literature search, expert interviews, and then 2 waves of a web-based survey. On this survey, 93 participants from outpatient, community-based, and primary care clinics rated the importance of the top HCT outcomes identified by the Delphi process. Analyses were performed from July 5, 2014, to December 5, 2014. EXPOSURES Health care transition outcomes of adolescents and young adults with special health care needs. MAIN OUTCOMES AND MEASURES Importance ratings of identified HCT outcomes rated on a Likert scale from 1 (not important) to 9 (very important). RESULTS The 2 waves of surveys included 117 and 93 participants as the list of outcomes was refined. Transition outcomes were refined by the 3 waves of the Delphi process, with quality of life being the highest-rated outcome with broad agreement. The 10 final outcomes identified included individual outcomes (quality of life, understanding the characteristics of conditions and complications, knowledge of medication, self-management, adherence to medication, and understanding health insurance), health services outcomes (attending medical appointments, having a medical home, and avoidance of unnecessary hospitalization), and a social outcome (having a social network). Participants indicated that different outcomes were likely needed for individuals with cognitive disabilities. CONCLUSIONS AND RELEVANCE Quality of life is an important construct relevant to HCT. Future research should identify valid measures associated with each outcome and further explore the role that quality of life plays in the HCT process. Achieving consensus is a critical step toward the development of reliable and objective comparisons of HCT outcomes across clinical conditions and care delivery locations.

Systematic Review of the Impact of Transition Interventions for Adolescents With Chronic Illness on Transfer From Pediatric to Adult Healthcare

Transfer from pediatric to adult care is a critical component of a high-quality transition experience for adolescents and young adults (AYA) with chronic illness. To examine the current evidence regarding the effect of transition interventions on care transfer, we performed a systematic review of studies that evaluated the effect of transition interventions on the specific health services outcome of transfer. The Medline, CINAHL, and PsycINFO databases were searched for studies that evaluated 1) a discrete transition intervention for AYA, 2) included a comparison group, and 3) reported on the outcome of transfer from pediatric to adult healthcare. References were screened and reviewed separately by authors, and relevant study details were abstracted during the review process. Five studies from five different countries were included in the final analysis. All five studies were conducted in specialty care clinics, with three interventions involving a nurse practitioner or systems navigator and two interventions involving physicians. Four studies were retrospective observational studies, and one was a pilot randomized controlled trial. Three of the five studies found that the transition intervention was associated with increased rates of transfer while the other two showed no statistically significant effects. Overall, evaluation of transfer appears to be hindered by methodological challenges. Establishing clearer definitions and metrics of transfer and creating the infrastructure needed to monitor the transfer of patients more consistently are important goals.

Systematic review of positive youth development programs for adolescents with chronic illness.

BACKGROUND AND OBJECTIVE: The Positive Youth Development (PYD) framework has been successfully used to support at-risk youth. However, its effectiveness in fostering positive outcomes for adolescents with chronic illness has not been established. We performed a systematic review of PYD-consistent programs for adolescents with chronic illness. METHODS: Data sources included PubMed, CINAHL, and PsychINFO. Guided by an analytic framework, we searched for studies of PYD-consistent programs serving adolescents and young adults aged 13 through 24 with chronic illness. References were screened iteratively with increasing depth until a focused cohort was obtained and reviewed in full. The authors separately reviewed the studies using structured analysis forms. Relevant study details were abstracted during the review process. RESULTS: Fifteen studies describing 14 programs were included in the analysis. Three comprehensive programs included all 3 core components of a PYD program, including opportunities for youth leadership, skill building, and sustained connections between youth and adults. Four programs were primarily mentoring programs, and 7 others focused on youth leadership. Programs served youth with a variety of chronic illnesses. The quality and type of evaluation varied considerably, with most reporting psychosocial outcomes but only a few including medical outcomes. CONCLUSIONS: The PYD-consistent programs identified in this review can serve as models for the development of youth development programs for adolescents with chronic illness. Additional study is needed to evaluate such programs rigorously with respect to both psychosocial and health-related outcomes. PYD-consistent programs have the potential to reach youth with chronic illness and promote positive adult outcomes broadly.

An Evaluation of a Positive Youth Development Program for Adolescents with Chronic Illness

PURPOSE Youth with chronic illness often struggle transitioning to adulthood and adult medical care. This article examines the outcomes of a group mentoring program called The Adolescent Leadership Council (TALC) that brings together high school participants and college mentors, all with chronic illness. TALC uses a positive youth development (PYD) approach, emphasizing strong relationships between youth and adults in an environment where youth can learn important life skills and take a leadership role. METHODS A pre-/postprogram participant survey was conducted for high school participants using a loneliness scale and a transition readiness survey. An alumni survey was conducted with all high school and college mentor graduates to assess educational-, vocational-, and health care-related outcomes. RESULTS Program records review and the alumni survey indicated that TALC was consistent with the PYD program model. Twenty high school students participated in the pre-/postprogram outcomes evaluation, which demonstrated a decrease in loneliness from 46 to 38.5 (p < .001) and an increase in health care self-advocacy from 3.8 to 4.2 (p < .001). Thirty-four alumni participated in the alumni survey. All high school and college mentor alumni had graduated from high school and college, respectively, and all were either currently in school or working. The majority of alumni were seeing adult providers for medical care. CONCLUSIONS The TALC program applies the principles of PYD to support positive educational, vocational, and health care outcomes for youth with chronic illness. Program development using the PYD perspective is an important new approach for supporting adult development of youth with chronic illness.

Diabetes summer camps: history, safety, and outcomes.

Maslow GR, Lobato D. Diabetes summer camps: history, safety, and outcomes. Pediatric Diabetes 2009: 10: 278–288. Gary R Maslow and Debra Lobato Department of Pediatrics, The Warren Alpert Medical School of Brown University, Rhode Island Hospital, Providence, RI, USA; Bradley Hasbro Children’s Research Center, Rhode Island Hospital, Providence, RI, USA; and Department of Psychiatry and Human Behavior, The Alpert Medical School of Brown University, Providence, RI, USA

Protective Connections and Educational Attainment Among Young Adults With Childhood‐Onset Chronic Illness

BACKGROUND Youth with childhood-onset chronic illness (COCI) are at risk of poor educational attainment. Specific protective factors that promote college graduation in this population have not been studied previously. In this study, we examine the role protective factors during adolescence play in promoting college graduation among young adults with COCI. METHODS Data were collected from 10,925 participants in the National Longitudinal Study of Adolescent Health (Add Health). Protective factors present before 18 years of age included mentoring, parent relationship quality, school connectedness, and religious attendance. College graduation was the outcome of interest assessed when participants had a mean age of 28 years. Analysis was stratified by presence of COCI. RESULTS About 2% of participants (N = 230) had 1 of 4 COCIs (cancer, diabetes, epilepsy, or heart disease). All 4 protective factors were associated with college graduation for youth without COCI. In the final multivariate model, only school connectedness was associated with college graduation for youth with COCI. CONCLUSION School connectedness is of particular importance in promoting educational attainment for youth with COCI.

Summer camps for children with burn injuries: a literature review.

The first summer camps for children with burn injuries started over 25 years ago, and as of 2008, there were 60 camps worldwide. This review examines the literature on summer pediatric burn camps. The authors describe common characteristics of burn camp structure, activities, and staffing and then examine the scientific evidence regarding the effect of burn camp programs on campers and camp staff volunteers. A search of Pubmed and Psychinfo databases from 1970 to 2008 for articles related to pediatric burn summer camps identified 17 articles, of which 13 fit the inclusion criteria. Existing literature consists primarily of qualitative studies, suggesting that burn camp can decrease camper isolation, improve self-esteem, and promote coping and social skills. Studies examining volunteer staff at burn camp have consistently found that there are both personal and professional benefits. Quantitative studies of self-esteem have yielded equivocal results. No studies have examined safety or the effect of burn camp on medical or rehabilitation outcomes. For the past 25 years, pediatric summer camps for children with burn injuries have played an important rehabilitation role and provided a strong community that benefits both campers and staff. Future research using more rigorous research methods and examining a broader range of outcomes (eg, safety and medical/rehabilitation outcomes) is recommended.

Peer support of complex health behaviors in prevention and disease management with special reference to diabetes: systematic reviews

ObjectivesExamine Peer Support (PS) for complex, sustained health behaviors in prevention or disease management with emphasis on diabetes prevention and management.Data sources and eligibilityPS was defined as emotional, motivational and practical assistance provided by nonprofessionals for complex health behaviors. Initial review examined 65 studies drawn from 1442 abstracts identified through PubMed, published 1/1/2000–7/15/2011. From this search, 24 reviews were also identified. Extension of the search in diabetes identified 30 studies published 1/1/2000–12/31/2015.ResultsIn initial review, 54 of all 65 studies (83.1%) reported significant impacts of PS, 40 (61.5%) reporting between-group differences and another 14 (21.5%) reporting significant within-group changes. Across 19 of 24 reviews providing quantifiable findings, a median of 64.5% of studies reviewed reported significant effects of PS. In extended review of diabetes, 26 of all 30 studies (86.7%) reported significant impacts of PS, 17 (56.7%) reporting between-group differences and another nine (30.0%) reporting significant within-group changes. Among 19 of these 30 reporting HbA1c data, average reduction was 0.76 points. Studies that did not find effects of PS included other sources of support, implementation or methodological problems, lack of acceptance of interventions, poor fit to recipient needs, and possible harm of unmoderated PS.ConclusionsAcross diverse settings, including under-resourced countries and health care systems, PS is effective in improving complex health behaviors in disease prevention and management including in diabetes.