Barriers and Opportunities for Patient-Reported Outcome Implementation: A National Pediatrician Survey in the United States.

PURPOSE: To characterize pediatricians' perceived barriers and areas of confidence in assessing patient-reported outcomes (PROs) in the U.S., and to test associations of these factors with implementing PRO assessment. METHODS: Using a random sample from the members of American Medical Association, we recruited general pediatricians and pediatric subspecialists to complete a survey (July 2011 to December 2013). Perceived barriers and confidence in PRO assessment were compared by age, pediatric specialty (general pediatrics, seven subspecialties), practice settings (academic, private), and region of practice. Multivariable logistic regressions tested associations of demographic factors, barriers, and confidence factors with the implementation of PRO assessment. FINDINGS: The survey was completed by 458 participants (response rate 48.5%); of these, 40.4%, 15.9%, 15.5%, and 8.1% were general pediatricians, cardiology, hematology/oncology, and pulmonary specialists, respectively. PRO assessment was implemented by 29.0% of the pediatricians. The top five barriers for PRO assessment included limited time/manpower (79.0%), limited training (77.4%), lengthy PRO instruments (76%), lack of meaningful cut-offs on PRO scores (75.5%), and unavailable PRO instruments (75.0%). Limited knowledge of PROs (OR 4.10; 95% CI 2.21, 7.60) and unavailability of PRO instruments (OR 1.87; 95% CI 1.01, 3.49) increased the odds of not implementing the assessment, whereas confidence in PRO assessments compatible with norms (OR 0.41; 95% CI 0.23, 0.72) and perceived benefit over clinical judgment alone (OR 0.53; 95% CI 0.31, 0.93) decreased the odds of not implementing the assessment. INTERPRETATION: significant barriers to PRO assessment in pediatric settings suggest the need for providing training, resources, and practical guidance toward implementation. Patient or Public Contribution: healthcare service users contributed to this study by completing a survey and providing feedback about the barriers and areas of confidence in assessing PROs for pediatric populations.

Racial and Ethnic Disparities in Health Outcomes Among Long-Term Survivors of Childhood Cancer: A Scoping Review.

The five-year survival rate of childhood cancer has increased substantially over the past 50 yr; however, racial/ethnic disparities in health outcomes of survival have not been systematically reviewed. This scoping review summarized health disparities between racial/ethnic minorities (specifically non-Hispanic Black and Hispanic) and non-Hispanic White childhood cancer survivors, and elucidated factors that may explain disparities in health outcomes. We used the terms "race", "ethnicity", "childhood cancer", "pediatric cancer", and "survivor" to search the title and abstract for the articles published in PubMed and Scopus from inception to February 2021. After removing duplicates, 189 articles were screened, and 23 empirical articles were included in this review study. All study populations were from North America, and the mean distribution of race/ethnicity was 6.9% for non-Hispanic Black and 4.5% for Hispanic. Health outcomes were categorized as healthcare utilization, patient-reported outcomes, chronic health conditions, and survival status. We found robust evidence of racial/ethnic disparities over four domains of health outcomes. However, health disparities were explained by clinical factors (e.g., diagnosis, treatment), demographic (e.g., age, sex), individual-level socioeconomic status (SES; e.g., educational attainment, personal income, health insurance coverage), family-level SES (e.g., family income, parent educational attainment), neighborhood-level SES (e.g., geographic location), and lifestyle health risk (e.g., cardiovascular risk) in some but not all articles. We discuss the importance of collecting comprehensive social determinants of racial/ethnic disparities inclusive of individual-level, family-level, and neighborhood-level SES. We suggest integrating these variables into healthcare systems (e.g., electronic health records), and utilizing information technology and analytics to better understand the disparity gap for racial/ethnic minorities of childhood cancer survivors. Furthermore, we suggest national and local efforts to close the gap through improving health insurance access, education and transportation aid, racial-culture-specific social learning interventions, and diversity informed training.

Online Platform to Assess Complex Social Relationships and Patient-Reported Outcomes Among Adolescent and Young Adult Cancer Survivors.

PURPOSE: Social integration and relationship issues have been understudied among adolescent and young adult (AYA) cancer survivors. This study compared social relationships (social networks, support, and isolation) between AYA cancer survivors and noncancer controls, and identified social integration mechanisms through which the cancer experience influences patient-reported outcomes (PROs). MATERIALS AND METHODS: One hundred two AYA cancer survivors and 102 age, sex, and race-matched noncancer controls from a national Internet panel completed an online survey to identify up to 25 of closest friends and relatives whom they have contacted within the past 2 years. Participants' interpersonal connections were used to create a social network index. The Duke-UNC Functional Social Support Questionnaire, UCLA Loneliness Scale, and PROMIS-29 Profile were used to measure social support, perceived isolation or loneliness, and PROs (physical functioning, pain interference, fatigue, anxiety, and depression domains), respectively. Path analysis tested effects of cancer experience on PROs using serial social relationship variables as mediators. RESULTS: Compared with controls, survivors of lymphoma, leukemia, and solid tumor had better social networks; however, survivors of solid tumor and central nervous system malignancies had higher perceived loneliness (all P values < .05). Cancer experience was directly associated with poor PROs (P values < .05 for all domains except fatigue) and indirectly associated through the social network-support-loneliness pathway (all P values < .05). Survivors with higher loneliness had lower physical functioning and higher pain interference, fatigue, anxiety, and depression versus controls with lower loneliness (all P values < .05). CONCLUSION: Compared with controls, survivors were more socially connected but experienced greater loneliness, which was associated with poorer PROs. Screening social integration issues during follow-up care and providing appropriate interventions are warranted.