Fertility Preservation Decisional Turning Points for Adolescents and Young Adults With Cancer: Exploring Alignment and Divergence by Race and Ethnicity.

PURPOSE: For adolescents and young adults (AYAs) with cancer, fertility preservation (FP) decision making is complex and distressing. Racial/ethnic minority (REM) AYAs experience disparities in FP awareness, uptake, and outcomes. A turning point (TP) is a point of reflection, change, or decisive moment(s) resulting in changes in perspectives or trajectories. To enhance understanding of AYAs' diverse experiences, this study examined alignment and/or divergence of FP decisional TPs among non-Hispanic White (NHW) AYAs and REM AYAs. METHODS: Qualitative semistructured interviews were conducted in person, by video, or phone with 36 AYAs (20 NHW and 16 REM [nine Hispanic and seven Black/multiracial Black). The constant comparative method was used to identify and analyze themes illustrating participants' conceptualization and/or experience of FP decisional TPs. RESULTS: Seven thematic TPs emerged: (1) emotional reaction to discovering FP procedures exist; (2) encountering unclear or dismissive communication during initial fertility conversations with health care providers; (3) encountering direct and supportive communication during initial fertility conversations with health care providers; (4) participating in critical family conversations about pursuing FP; (5) weighing personal desire for a child against other priorities/circumstances; (6) realizing FP is not feasible, and (7) experiencing unanticipated changes in cancer diagnosis or treatment plans/procedures. TP variations include REM participants reported dismissive communication and suggested cost was prohibitive. NHW participants emphasized more forcefully that biological children may become a future priority. CONCLUSION: Understanding how clinical communication and priorities/resources may vary for NHW and REM AYAs can inform future interventions aimed at reducing health disparities and enhancing patient-centered care.

Association Between Patient-Reported Outcomes and Treatment Failure in Juvenile Idiopathic Arthritis.

OBJECTIVE: Children with juvenile idiopathic arthritis (JIA) frequently exhibit symptoms months before diagnosis. The aims of this study were to assess whether baseline patient-reported outcomes (PROs) are associated with changes in JIA pharmacotherapy treatment and whether symptom duration prior to JIA diagnosis is associated with disease activity scores over time. METHODS: This is a retrospective cohort study of patients with an incident diagnosis of JIA. Patient-reported symptom duration, pain, energy, disease activity, sleep, anxiety, and depression screenings, as well as provider-reported disease activity and joint count, were collected during routine clinical care. Cox proportional hazards evaluated PROs, disease activity scores, and symptom duration with initial medication failure within 9 months of diagnosis. Multivariate mixed effects linear regression evaluated the association of symptom duration with disease activity scores. RESULTS: There were 58 children (66% female, 35% oligoarticular JIA) in the cohort. Nearly half of patients failed initial therapy within 9 months. Unadjusted analysis showed that higher energy (hazard ratio [HR]: 0.82; 95% confidence interval [CI]: 0.69-0.99; P = 0.04) and longer symptom duration (HR: 0.96; 95% CI: 0.93-0.99; P = 0.03) at diagnosis were protective against medication failure. Adjusted analysis showed that symptom duration prior to diagnosis was protective against medication failure (HR: 0.95; 95% CI: 0.92-0.99; P = 0.02); there was no association between medication failure and pain, psychiatric symptoms, or disease activity scores. There was a positive association with longer symptom duration and higher disease activity at 30 and 60 days, but this was not sustained. CONCLUSION: Higher energy levels and longer symptom duration are protective against initial JIA treatment failures. Initial treatments informed by patient-reported data could lead to more successful outcomes by changes in treatment paradigms.

Factors Associated With Participation in Clinical Trials Among Patients With Lupus.

BACKGROUND/OBJECTIVE: Participation rates for clinical trials, including lupus trials, in the United States are low, but are even lower for underrepresented minorities. The impact of underrepresentation in trials can be far-reaching and is problematic because female subjects of color with lupus experience greater morbidity and mortality. As such, the overarching goal of this study was to characterize the factors that influence participation in lupus clinical trials. METHODS: The Lupus and Allied Diseases Association, the Lupus Foundation of America, and the Lupus Research Alliance collected data for their externally led Patient-Focused Drug Development Initiative-for the purpose of understanding and improving the rates of participation in lupus-related clinical trials. Participants completed a 46-question survey (in English or Spanish) electronically or on paper, which was distributed online or at lupus events. Logistic regression was used to test whether demographic and disease characteristics were associated with participation in past lupus trials. RESULTS: Data were available for 2220 respondents. Black respondents with lupus were more likely, than their White and Hispanic counterparts, to have participated in past clinical trials (p < 0.05). Although not statistically significant, Hispanic respondents were also more likely to have participated than their White counterparts (odds ratio, 1.40; 95% confidence interval, 0.96-2.11). Both demographic (ie, race/ethnicity) and medical (ie, disease severity defined as more organ involvement) factors seem to be important determinants of participation in clinical trials (p < 0.05). CONCLUSIONS: Combining the results from this study and prior research provides insight into recruitment strategies to increase participation rates of historically underrepresented minorities.

A conceptual model of fertility concerns among adolescents and young adults with cancer.

OBJECTIVE: For adolescents and young adults (AYAs), cancer-related fertility concerns (FC) are salient, disruptive, and complex. Clinical communication about FC and fertility preservation options are suboptimal, increasing patient distress. The purpose of this study is to construct a conceptual model of FC among AYAs with cancer to inform future measurement development. METHODS: Concept elicitation interviews were conducted with a purposive sample of stakeholders: 36 AYAs (10 adolescents, 12 emerging adults, and 14 young adults), 36 AYA oncology health care providers, and 12 content experts in cancer-related infertility. The constant comparative method was used to identify themes and properties that illustrate AYAs' conceptualization and/or experience of FC. RESULTS: Thirteen themes characterized FC among AYAs with cancer, varying by stakeholder group and domain affiliations. Themes were grouped by four domains (e.g., affective, information, coping, and logistical), which organized the conceptual model. Affective experiences were further determined to be an important component within the other three domains. AYAs' fertility and fertility preservation experiences were shaped by communication factors and timing factors including placement along the lifespan/cancer continuum. CONCLUSIONS: AYA FC are characterized by uncertainty and confusion that may contribute to future decisional regret or magnify feelings of loss. Results add to previous research by examining individual, relational, and health care factors that fluctuate to inform fertility preservation perceptions and decision-making across the AYA age spectrum. Findings will be used to develop and test new self-report measures of FC among AYAs with cancer and survivors using classic and modern measurement theory approaches.

Weight status and health behaviors of adolescents and young adults with sickle cell disease: The emerging risk for obesity.

Historically, youth with sickle cell disease (SCD) were at risk for being underweight, but recent data suggests this population is replicating obesity trends of youth in the United States. The current observational study assessed the weight status and health behaviors of 44 adolescents and young adults with SCD via a self-report survey and chart review. Using height and weight data closest to survey completion date, 27% of participants were either overweight or obese. With respect to obesogenic risk behaviors, 77% ate fast food 1-3 times per week, 25% had no fruits/vegetables with any of their meals, 11% drank no water, and 57% watched 4 or more hours of television per day. Though more research is needed, this preliminary study adds to the SCD literature suggesting an emerging shift toward obesity in this population. As such, adolescents with SCD may benefit from interventions to decrease obesity risk factors as being overweight or obese has the potential to worsen SCD-related symptoms and complications.

Family Dynamics and Pediatric Weight Management: Putting the Family into Family-Based Treatment.

PURPOSE OF REVIEW: The treatment of pediatric obesity entails working with entire families. However, aside from parenting and family health behaviors, family dynamics and relationships are not often incorporated in clinical treatment of obesity. RECENT FINDINGS: Evidence across several studies suggest a relationship between family dynamics and child weight, with impaired family dynamics associated with higher weight status in children. Evidence is mixed if child age and family function are associated. Unfortunately, there is little evidence that addressing family dynamics (i.e., relationships and overall family system) will improve weight in children with obesity. Notably, few studies target family dynamics specifically. There are several validated measures of family dynamics available for researchers to explore the family system as it relates to child health and behaviors. A deeper understanding of family dynamics and relationships may provide new avenues to address issues of weight in children; accounting for the family, and their underlying functioning, may benefit the clinician and child engaged in weight management.

Feasibility and acceptability of an innovative adherence intervention for young adults with childhood-onset systemic Lupus Erythematosus.

BACKGROUND: In Childhood-Onset Systemic Lupus Erythematosus (cSLE), poor medication adherence rates are very high. Interventions targeting this problem in cSLE are limited thus effective interventions are needed. The objective of this study is to examine the feasibility and acceptability an intervention (automated digital reminders + personalized prescribed treatment plan (pPTP)) to improve medication adherence in young adults with cSLE over 3 months. METHOD: This is a proof-of-concept randomized controlled study. All participants received SimpleMed+ pillboxes that track adherence. The treatment group received a pPTP, and in month 2, preselected digital reminders for missed doses. Reminders were discontinued after 30 days and adherence data collected. Data analysis was done using t-tests. RESULTS: Twenty-one participants were approached and nineteen consented to participate, yielding a recruitment rate of 86%. Participants were on average 20.5 years, mostly black (58%) and female (84%). Of the nineteen consented, eleven were randomized to control (57%) and eight to treatment (42%) groups respectively. All participants in the treatment group rated the pillbox as easy to use, notably; none reported boredom with the pillbox or reminders. Also, 88% of participants in the treatment group rated the pillbox as helpful, however, only 50% reported the pPTP taught them new information about lupus or made them more interested in their lupus management. CONCLUSIONS: This is the first use of an electronic pillbox to track adherence to multiple medications in cSLE. The high rating of the pillbox makes it an acceptable method of measuring adherence. Feasibility and acceptability ratings for the intervention were mixed suggesting a there is a subset of cSLE patients for whom this intervention would be beneficial. Future research should focus on a larger trial.