Exploring Genetic Testing for Rare Disorders of Obesity: Experience and Perspectives of Pediatric Weight Management Providers.

Background: This study describes experiences and perspectives of pediatric weight management (PWM) providers on the implementation of genetic testing for rare causes of obesity. Methods: Purposive and snowball sampling recruited PWM providers via email to complete a 23-question survey with multiple choice and open-ended questions. Analyses include descriptive statistics, Fisher's exact test, one-way ANOVA with Tukey's post hoc test, and qualitative analysis. Results: Of the 55 respondents, 80% reported ordering genetic testing. Respondents were primarily physicians (82.8%) in practice for 11-20 years (42%), identified as female (80%), White (76.4%), and non-Hispanic (92.7%) and provided PWM care 1-4 half day sessions per week. Frequently reported patient characteristics that prompted testing did not vary by provider years of experience (YOE). These included obesity onset before age 6, hyperphagia, dysmorphic facies, and developmental delays. The number of patient characteristics that prompted testing varied by YOE (p = 0.03); respondents with 6-10 YOE indicated more patient characteristics than respondents with >20 YOE (mean 10.3 vs. mean 6.2). The reported primary benefit of testing was health information for patients/families; the primary drawback was the high number of indeterminate tests. Ethical concerns expressed were fear of increasing weight stigma, discrimination, and impact on insurance coverage. Respondents (42%) desired training and guidance on interpreting results and counseling patients and families. Conclusions: Most PWM providers reported genetic testing as an option for patient management. Provider training in genetics/genomics and research into provider and family attitudes on the genetics of obesity and the value of genetic testing are next steps to consider.

Beyond Binge Eating: The Impact of Implicit Biases in Healthcare on Youth with Disordered Eating and Obesity.

(1) Background: Obesity and eating disorders (ED) can coexist resulting in worse health outcomes. Youth with ED are more likely to have obesity relative to peers with a healthy weight. Pediatric providers deliver first-line care to children and youth of all sizes and body shapes from infancy to adolescents. As healthcare providers (HCPs), we bring biases into our practice. Learning to recognize and address these biases is needed to provide the best care for youth with obesity. (2) Purpose: This paper aims to summarize the literature regarding the prevalence of ED beyond binge eating in youth with obesity and discuss how the intersection of weight, gender, and racial biases impact the assessment, diagnosis, and treatment of ED. We provide recommendations for practice and considerations for research and policy. (3) Conclusions: The assessment and treatment of ED and disordered eating behaviors (DEBs) in youth with obesity is complex and requires a holistic approach. This approach begins with identifying and understanding how one's implicit biases impact care. Providing care from a patient-centers lens, which considers how the intersection of multiple stigmatized identities increases the risk for DEBs in youth with obesity may improve long-term health outcomes.

Fathers' Experiences of Caring for a Child with a Chronic Illness: A Systematic Review.

The prevalence of children living with chronic health conditions is increasing worldwide and can disrupt family roles, relationships, function, and parental involvement in family caregiving. The purpose of this systematic review was to explore fathers' experiences and involvement in caring for a child with a chronic condition. Systematic searches using seven databases were conducted. Study criteria included (1) peer-reviewed original research in English, Spanish, French, or Portuguese, (2) children less than 19 years of age with a chronic condition, (3) fathers (biological or guardian) as direct informants, and (4) outcomes addressing fathers' experience, perceptions, and/or involvement in the child's care. Data were synthesized from ten articles reflecting eight separate studies that utilized quantitative designs. Three areas of focus were identified: Family Functioning, Father's Psychological Health, and Need for Support. Data suggested increased involvement from the father in caring for their child with a chronic condition was associated with improved family functioning, increased anxiety and distress, decreased self-esteem, and increased need for support. This review revealed a paucity of data regarding fathers' experiences and involvement when caring for a child with a chronic condition, with that available primarily from developed countries. Rigorous empirical studies are needed to deepen understanding of how fathers are involved in the care of their child with a chronic condition.

Testing for rare genetic causes of obesity: findings and experiences from a pediatric weight management program.

BACKGROUND: Genetic screening for youth with obesity in the absence of syndromic findings has not been part of obesity management. For children with early onset obesity, genetic screening is recommended for those having clinical features of genetic obesity syndromes (including hyperphagia). OBJECTIVES: The overarching goal of this work is to report the findings and experiences from one pediatric weight management program that implemented targeted sequencing analysis for genes known to cause rare genetic disorders of obesity. SUBJECTS/METHODS: This exploratory study evaluated youth tested over an 18-month period using a panel of 40-genes in the melanocortin 4 receptor pathway. Medical records were reviewed for demographic and visit information, including body mass index (BMI) percent of 95th percentile (%BMIp95) and two eating behaviors. RESULTS: Of 117 subjects: 51.3% were male; 53.8% Hispanic; mean age 10.2 years (SD 3.8); mean %BMIp95 157% (SD 29%). Most subjects were self- or caregiver-reported to have overeating to excess or binge eating (80.3%) and sneaking food or eating in secret (59.0%). Among analyzed genes, 72 subjects (61.5%) had at least one variant reported; 50 (42.7%) had a single variant reported; 22 (18.8%) had 2-4 variants reported; most variants were rare (<0.05% minor allele frequency [MAF]), and of uncertain significance; all variants were heterozygous. Nine subjects (7.7%) had a variant reported as PSCK1 "risk" or MC4R "likely pathogenic"; 39 (33.3%) had a Bardet-Biedl Syndrome (BBS) gene variant (4 with "pathogenic" or "likely pathogenic" variants). Therefore, 9 youth (7.7%) had gene variants previously identified as increasing risk for obesity and 4 youth (3.4%) had BBS carrier status. CONCLUSIONS: Panel testing identified rare variants of uncertain significance in most youth tested, and infrequently identified variants previously reported to increase the risk for obesity. Further research in larger cohorts is needed to understand how genetic variants influence the expression of non-syndromic obesity.

Weight stigma in children and adolescents: Recommendations for practice and policy.

ABSTRACT: Weight stigma is the devaluation of a person because of excess body weight. Individuals who experience stigmatization are at increased risk for adverse physical and psychological health outcomes. This article provides an overview of weight stigma and the implications for nursing practice and policy.

Perceptions of Weight Management: Interviews with Adolescents with Severe Obesity and Their Mothers.

Background: Adolescence is a challenging time for families, which is intensified when managing a chronic health condition. In adolescents with severe obesity, little is known about how adolescent/mother dyads approach management. Our study aims to (1) explore similarities/differences in adolescent/mother dyads' perceptions of weight management behaviors and (2) describe their experiences with successes and challenges related to weight management. Methods: This was a qualitative descriptive analysis of interviews from 21 adolescent/mother dyads. Conventional content analysis was used to identify themes characterizing dyads' weight management efforts. Results: Two patterns of perceptions were identified across the dyads specific to weight management behaviors: collaborative (dyads agreed) and conflicting (dyads disagreed). Weight management themes with collaborative perceptions were food preferences; food and emotion; the adolescent is active; exercise is not enjoyable; the family is active together; and stopping medications. Weight management themes with conflicting perceptions were responsibility for initiating and maintaining exercise, motivation and willingness to exercise, and responsibility for medications. Dyads had collaborative pattern responses on perceptions of success and challenges. Themes related to successes were weight loss and supportive relationships. Themes related to challenges were inconsistent daily routines and schedules, and unsupportive relationships. Conclusions: Dyads responded with collaborative or conflicting perceptions to weight management behaviors and with collaborative responses to success and challenges. Sustaining healthy habits was difficult from the perspectives of dyads. For youth with severe obesity, providing care that recognizes and addressees issues youth and their families experience may require improved and innovative interventions.

Experiences of weight stigma in adolescents with severe obesity and their families.

AIM: To describe the experiences of weight stigma in adolescents with severe obesity and their parents. DESIGN: Qualitative descriptive secondary analysis. METHODS: A secondary analysis on 31 transcripts from a larger study of 46 transcripts conducted between February 2019 and June 2020. Semi-structured interviews were conducted with 19 parents (n = 17 mothers, n = 2 fathers) and 12 adolescents (n = 7 male, n = 5 female). Interviews were digitally audio recorded, transcribed and analysed using conventional content analysis. RESULTS: Four common themes were identified reflecting experiences of weight stigma: weight-based teasing and bullying, interactions with healthcare providers (HCPs), family interactions and blame. Subthemes were fairness and impact on mental health. CONCLUSION: This secondary analysis adds to the sparse literature documenting the experiences of weight stigma from adolescents with severe obesity and their families. It is important to understand the experiences of weight stigma from the adolescent and parent perspective as it can inform healthcare, education and policies across communities and facilitate holistic health for this vulnerable population. IMPACT: The need for research to better understand how experiences of weight stigma correlate with physiological and psychological outcomes and inform innovative interventions are critical to improve treatment of severe obesity. Healthcare providers across disciplines are in a strategic position to change the paradigm through which we provide care to youth with severe obesity and guide families in supporting their children's weight management efforts without contributing to weight stigma.

Family Management of Severe Obesity in Adolescents.

PURPOSE: Severe obesity, defined as a body mass index (BMI) ≥120th percent of the 95th BMI percentile for age and sex, is the fastest growing subcategory of obesity among youth, yet little is known about how this group understands and incorporates weight management strategies. The aims of this study were to explore how parents and adolescents understand severe obesity and incorporate management into their daily lives and evaluate the applicability of the Family Management Styles Framework (FMSF) to better understand the impact of severe obesity for adolescents. DESIGN AND METHODS: Directed content analysis grounded in a modified version of the FMSF was used to analyze one-time in-home face-to-face interviews with adolescents aged 12-17 years (N = 14) who received pediatric weight management care and a parent (N = 17). RESULTS: Both adolescents and parents described the day-to-day management as challenging and impactful to parent-child and sibling relationships. They described the need for sustained support and coaching in meeting daily physical activity requirements and related stories of weight stigma experienced. Further, parents' and adolescents' views were mostly congruent, except in their view of effectiveness of daily routines and how family attitudes and actions did or did not support the adolescent. CONCLUSIONS: The FMSF was successfully applied to understand family management of adolescents with severe obesity. These adolescents have complex physical and psychological needs impacting effective weight management and family life. PRACTICE IMPLICATIONS: Technology interventions should be considered to improve physiological and psychological outcomes for youth with severe obesity.

A Scoping Review: Family and Child Perspectives of Clinic-Based Obesity Treatment.

PROBLEM: Interventions for children with obesity lead to only modest improvements in BMI and long-term outcomes, and data are limited on the perspectives of families of children with obesity in clinic-based treatment. This scoping review seeks to answer the question: What is known about the perspectives of families and children who receive care in clinic-based child obesity treatment? ELIGIBILITY CRITERIA: Studies were eligible for inclusion in this review that 1) reported parent, family or child perspectives of obesity treatment; 2) addressed concepts identified in the obesity literature as barriers or facilitators to success in obesity treatment from the perspective of the parent/family/child, including reasons for failure to return to clinic and satisfaction with care. SAMPLE: Twelve studies qualified for final inclusion in this scoping review RESULTS: Families report a lack of interventions tailored to their unique needs and resources. Barriers and facilitators encompass 1) structural issues (e.g., clinic location and scheduling); 2) financial issues; 3) patient and family issues; and 4) personal behaviors, motivation, and expectations. CONCLUSION: Data are lacking on the clinic-based treatment of children with severe obesity, and few studies report on non-maternal perspectives. IMPLICATIONS: Clinical practice must be tailored to individual family needs. Future research should concentrate on identifying missing variables which impact successful treatment outcomes through more rigorous qualitative studies, standardized outcome measures, focus on children with severe obesity, and fathers' and siblings' perspectives.