Katherine B. Bevans

Development and Content Validation of the Transition Readiness Inventory Item Pool for Adolescent and Young Adult Survivors of Childhood Cancer

Objective The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods. Methods Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART). Results Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version. Conclusions TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement.

Qualitative Development and Content Validation of the PROMIS Pediatric Sleep Health Items

ABSTRACT Objective: To develop the Patient Reported Outcome Measurement Information System (PROMIS) Pediatric Sleep Health item pool and evaluate its content validity. Participants: Participants included 8 expert sleep clinician-researchers, 64 children ages 8–17 years, and 54 parents of children ages 5–17 years. Methods: We started with item concepts and expressions from the PROMIS Sleep Disturbance and Sleep Related Impairment adult measures. Additional pediatric sleep health concepts were generated by expert (n = 8), child (n = 28), and parent (n = 33) concept elicitation interviews and a systematic review of existing pediatric sleep health questionnaires. Content validity of the item pool was evaluated with item translatability review, readability analysis, and child (n = 36) and parent (n = 21) cognitive interviews. Results: The final pediatric Sleep Health item pool includes 43 items that assess sleep disturbance (children’s capacity to fall and stay asleep, sleep quality, dreams, and parasomnias) and sleep-related impairments (daytime sleepiness, low energy, difficulty waking up, and the impact of sleep and sleepiness on cognition, affect, behavior, and daily activities). Items are translatable and relevant and well understood by children ages 8–17 and parents of children ages 5–17. Conclusions: Rigorous qualitative procedures were used to develop and evaluate the content validity of the PROMIS Pediatric Sleep Health item pool. Once the item pool’s psychometric properties are established, the scales will be useful for measuring children’s subjective experiences of sleep.

Development of a youth-report measure of DPN symptoms: Conceptualization and content validation

Aims To develop a content valid youth-report measure of diabetic peripheral neuropathy (DPN) symptoms. Methods Semi-structured interviews with 5 clinicians and 15 youth aged 8–17 with diabetes were conducted to elicit and clarify youth’s DPN experiences. A systematic review of existing adult-report DPN symptom measures was conducted to identify item concepts representative of each experience. The concepts were transformed into items that were iteratively revised based on cognitive interviews (n = 13 youth aged 8–17) and readability analyses. Results Clinician and youth interviews supported a tripartite conceptual framework of youth DPN symptoms: paresthesia, pain, and anesthesia. Forty-eight youth-report items were generated to represent DPN symptoms identified through the semi-structured interviews and a systematic review of 13 symptom questionnaires for adults. Of these, 23 were eliminated and 3 were revised based on cognitive interviews conducted with youth. The remaining 25 items were on average, written at a 3rd grade reading level. Conclusions This study is the first to generate a content valid self-report measure of youth’s lived experiences with DPN that uses developmentally appropriate terminology. With further psychometric testing, the measure could be used to advance research on pediatric DPN and enhance clinicians’ capacity to identify the condition in childhood.

The Anatomy of Developmental Predictors of Healthy Lives Study (TADPOHLS)

Numerous studies have followed people across significant portions of their lives. Secondary analyses with these studies offer opportunities to study life trajectories across diverse samples. To aid integrative efforts, we introduce The Anatomy of Developmental Predictors of Healthy Lives Study (TADPOHLS), a data base that categorizes items and constructs from 14 prospective longitudinal studies that followed participants from adolescence into adulthood. To classify items and measures, we created an extensive typology that provides a common language for categorizing study concepts. We illustrate the utility of the data base by examining adolescent perseverance and optimism as predictors of physical health outcomes across six studies. Adolescent perseverance and optimism were related to better physical health outcomes 15 to 20 years later. Overall, the data base offers a resource that contributes toward life-span studies of positive psychological and physical health.