Claire M. Wharton

Adolescent and Young Adult Patient Engagement and Participation in Survey-Based Research: A Report From the "Resilience in Adolescents and Young Adults With Cancer" Study.

Conducting patient‐reported outcomes research with adolescents and young adults (AYAs) is difficult due to low participation rates and high attrition. Forty‐seven AYAs with newly diagnosed cancer at two large hospitals were prospectively surveyed at the time of diagnosis and 3–6 and 12–18 months later. A subset participated in 1:1 semistructured interviews. Attrition prompted early study closure at one site. The majority of patients preferred paper–pencil to online surveys. Interview participants were more likely to complete surveys (e.g., 93% vs. 58% completion of 3–6 month surveys, P = 0.02). Engaging patients through qualitative methodologies and using patient‐preferred instruments may optimize future research success.

Provider Perspectives on Use of Medical Marijuana in Children With Cancer

As more states legalize MM, we explore provider practices, knowledge, attitudes, and barriers regarding legal MM use in children with cancer. BACKGROUND: Although medical marijuana (MM) may have utility in the supportive care of children with serious illness, it remains controversial. We investigated interdisciplinary provider perspectives on legal MM use in children with cancer. METHODS: We sent a 32-item, cross-sectional survey to 654 pediatric oncology providers in Illinois, Massachusetts, and Washington characterizing MM practices, knowledge, attitudes, and barriers. Forty-eight percent responded; 44% (n = 288) were included in analyses. Providers were stratified by status as legally eligible to certify (ETC) for MM. We used Fisher’s exact and Wilcoxon rank tests and univariate and multivariate logistic regression models for group comparisons. RESULTS: The provider median age was 35 years (range 22–70 years); 33% were ETC (83 physicians; 13 Washington state advance practice providers). Thirty percent of providers received ≥1 request for MM in the previous month. Notably, only 5% of all providers knew state-specific regulations. ETC providers were more likely to know that MM is against federal laws (P < .0001). Whereas most providers (92%) reported willingness to help children with cancer access MM, in adjusted models, ETC providers were less likely to indicate approval of patient MM use by smoking, oral formulations, as cancer-directed therapy, or to manage symptoms (P < .005 for all). Forty-six percent of all providers cited the absence of standards around formulations, potency, or dosing to be the greatest barrier to recommending MM. CONCLUSIONS: Most pediatric oncology providers are willing to consider MM use in children with cancer and receive frequent inquiries. However, ETC providers endorse less favorable attitudes overall. The absence of standards is an important barrier to recommending MM.

Voices of children and adolescents on phase 1 or phase 2 cancer trials: A new trial endpoint?

Pediatric participants on phase 1 or phase 2 clinical trials for incurable cancer are at risk of experiencing toxicities (adverse events [AEs]) related to trial participation. Multiple AEs are subjective; thus, the real impact of trial treatment cannot be known unless patient subjective reports are solicited.

The benefits and burdens of cancer: A prospective, longitudinal cohort study of adolescents and young adults.

243 Background: Much of the literature describing psychosocial consequences of cancer among adolescents and young adults (AYAs) has reported negative outcomes; however, AYAs also have potential for protective, positive outcomes. We aimed to prospectively characterize AYA patient-reported benefit and burden-finding after cancer diagnosis and hypothesized that benefit finding would be a salient coping mechanism. METHODS Semi-structured, 1:1 interviews were conducted with AYA patients after cancer diagnosis at 3 time points over 2 years, to elicit their expectations, hopes, worries, personal strengths, and challenges. A priori coding themes were defined from validated scales: changed sense of self, relationships, philosophy of life, and physical well-being. Verbatim transcripts were coded using content analyses by 3 independent coders for instances of benefit or burden by construct. Raw counts, ratios, and confidence intervals were calculated and compared by patient and time point. RESULTS Seventeen patients (mean age 17.1 ± 2.7; 8 [47%] male) completed 44 interviews with > 100 hours of transcript-data. Most common diagnoses were sarcoma (n = 8), acute leukemia (n = 6), and lymphoma (n = 3). Twelve patients completed all 3 interviews; reasons for withdrawal included death in all but 2 cases. Mean (±SD) counts of patient-reported benefit were higher than burden at each time point (T1, T2, T3); the benefit: burden ratio was > 1 in 68% of interviews (Table). Of the themes, changed sense of self was the most common benefit identified (44% of all reported benefits [95% CI 37%, 52%]) whereas physical complaints was the most common burden (32% [95% CI 25%, 39%]). Longitudinal analysis of subthemes among patients completing 3 interviews (N = 12) indicated an increase in self-identified positive and negative impact of cancer on personal, social and existential perspectives. CONCLUSIONS AYA patients with cancer identified more benefits than burdens related to their diagnoses at all times studied. There was a shift over time in the distribution of benefit and burden finding constructs which may highlight areas for potential intervention. [Table: see text].

Adolescent and Young Adult Patient Engagement and Participation in Survey-Based Research: A Report From the “Resilience in Adolescents and Young Adults With Cancer” Study: AYA Engagement and PRO Research

Conducting patient‐reported outcomes research with adolescents and young adults (AYAs) is difficult due to low participation rates and high attrition. Forty‐seven AYAs with newly diagnosed cancer at two large hospitals were prospectively surveyed at the time of diagnosis and 3–6 and 12–18 months later. A subset participated in 1:1 semistructured interviews. Attrition prompted early study closure at one site. The majority of patients preferred paper–pencil to online surveys. Interview participants were more likely to complete surveys (e.g., 93% vs. 58% completion of 3–6 month surveys, P = 0.02). Engaging patients through qualitative methodologies and using patient‐preferred instruments may optimize future research success.