Content Validation of a Patient-reported Outcome Measure for Pediatric Clients With Hand and Upper Extremity Impairment
Author ORCID Identifier
Year of Publication
Doctor of Philosophy (PhD)
Dr. Camille Skubik-Peplaski
Dr. Timothy Uhl
Occupational therapists and physical therapists practicing in hand therapy have adopted routine use of patient reported outcome measures (PROMs) for evaluating treatment outcomes. However, the PROMs currently used in pediatric hand care are limited in clinical utility for the pediatric population. Thus, a need exists for developing a PROM that is tailored to the pediatric hand therapy population. The overarching purpose of this dissertation is to establish the content validity of a novel PROM for children with hand and upper extremity impairment – the Upper Extremity Life Impact Measure-Youth (UE LIM-Y).
This three-part dissertation applies published standards for PROM development to achieve this aim. The first study, an interpretive descriptive study, accomplished two aims. First, it characterized the experience pediatric hand therapists have with outcomes assessment. Secondly, this qualitative study elucidated the outcomes that pediatric hand therapists perceive their patients desire from hand therapy intervention. A second study linked patient-identified treatment goals to the International Classification of Functioning, Disability and Health (ICF) to identify the treatment outcomes pediatric hand therapy patients desire most. In this ICF linking study, the meaningful concepts in patient-identified treatment goals were assigned to associated ICF codes. Then, frequency distributions of the ICF codes identified the most frequently desired treatment outcomes in context of the ICF. Findings from these two studies were merged into a conceptual model to develop a draft of the UE LIM-Y.
Finally, a cognitive interviewing (CI) study was used with a sample of patients from the target population to refine the UE LIM-Y. In this CI study, three rounds of data collection were performed using 1:1 interviews with children who were 8-20 years old and receiving care for a hand or upper extremity impairment at Cincinnati Children’s Hospital. Each round of data collection included 9-11 interviews with a diverse study sample selected with a purposive sampling technique. Interviews were recorded and transcribed verbatim and then analyzed using previously established coding methods to identify necessary PROM revisions. Data analysis was performed iteratively so that the draft PROM was revised after each round of data collection.
In combination, this approach established the content validity of the UE LIM-Y. Thus, this dissertation completes the entire qualitative phase of a mixed methods approach for developing a new PROM. Future work will involve subsequent psychometric studies to complete the quantitative phase of establishing the UE LIM-Y’s reliability and validity.
Digital Object Identifier (DOI)
This study was supported by the Cincinnati Children's Hospital Patient Services Grant (no: CCPSRG2020-01) in 2020.
Dorich, Jenny M., "Content Validation of a Patient-reported Outcome Measure for Pediatric Clients With Hand and Upper Extremity Impairment" (2022). Theses and Dissertations--Rehabilitation Sciences. 86.
Available for download on Friday, May 10, 2024