Dataset Information

Inclusive approaches to developing content valid patient-reported outcome measure response scales for youth with intellectual/developmental disabilities.

ABSTRACT:

Background

Patient-reported outcome measures (PROMs) are increasingly used in health care to evaluate service quality and client progress. Response scales are a critical component of PROM content validity and must be designed to be relevant and comprehensible by users.

Methods

In collaboration with eight youth co-researchers with intellectual/developmental disabilities ages 14-21, we used an iterative, three-stage approach to develop and select a response scale for the PEDI-PRO. Stages: 1) inclusive development of response scale options; 2) Collecting data about response scale options during focus groups with youth with intellectual/ developmental disabilities (n = 62); and 3) Analysing data to refine response options.

Results

Through two cycles of the three-stage process, the inclusive research approach led to the development of a content valid response scale that describes functional performance of everyday activities ("very easy," "a little easy," "a little hard").

Conclusion

An inclusive research approach can support the development of content valid PROM scales. We identified four broad strategies that supported youth co-researchers to engage in this response scale development process: universal design for learning, use of lived experiences, breaking down tasks, and peer support. Researchers may adopt and/or adapt the accessible inclusive research approaches described in this manuscript for measurement development and other research projects.

SUBMITTER: Schwartz AE

PROVIDER: S-EPMC7942843 | biostudies-literature | 2021 Mar

REPOSITORIES: biostudies-literature

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Publications

Inclusive approaches to developing content valid patient-reported outcome measure response scales for youth with intellectual/developmental disabilities.

Schwartz Ariel E AE Kramer Jessica M JM

British journal of learning disabilities 20201006 1

<h4>Background</h4>Patient-reported outcome measures (PROMs) are increasingly used in health care to evaluate service quality and client progress. Response scales are a critical component of PROM content validity and must be designed to be relevant and comprehensible by users.<h4>Methods</h4>In collaboration with eight youth co-researchers with intellectual/developmental disabilities ages 14-21, we used an iterative, three-stage approach to develop and select a response scale for the PEDI-PRO. S ...[more]

PMID: 33708003

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Project description:ImportanceYouth with intellectual and developmental disabilities (I/DD) are more likely to be placed in foster care than other youth. Examining the clinical and sociodemographic characteristics of youth with I/DD in the foster care system is critical for identifying disparities and understanding service needs.ObjectiveTo produce a population-level analysis of youth with I/DD in foster care that examines differences in rates of foster care involvement based on race, ethnicity, age, and sex.Design, setting, and participantsThis cross-sectional study involved all individuals with I/DD 21 years and younger enrolled in Medicaid through foster care in 2016 via data from Transformed Medicaid Statistical Information System (T-MSIS) Analytic Files (TAF) for all 50 US states and Washington, DC. As a key insurer of I/DD services and foster care, Medicaid claims offer a timely population-level analysis. Youth with I/DD were grouped into diagnostic subgroups: autism spectrum disorder (ASD) only, intellectual disability only, or ASD and ID. The data analysis took place from July 2022 to September 2023.ExposureTAF data contain Medicaid enrollment information by month with a binary indicator of foster care involvement, and eligibility files identify race, ethnicity, age, and sex.Main outcomes and measuresThe period prevalence of foster care involvement was determined among I/DD youth by diagnostic subgroups using an intersectional approach across race, ethnicity, age, and sex. Logistic regression examined associations between risk for foster care involvement and race, ethnicity, age, and sex.ResultsA total of 39 143 youth with I/DD had foster care involvement in 2016. Black youth (adjusted odds ratio [aOR], 1.37; 95% CI, 1.28-1.47) and females (aOR, 1.18; 95% CI, 1.1-1.27) had increased likelihood for foster care involvement. The likelihood for foster care involvement increased with age in all groups relative to the age group 0 to 5 years old.Conclusions and relevanceThis study found that among youth with I/DD, Black youth and females faced higher risk for foster care involvement, and the likelihood of foster care involvement increased with age. There is an urgent need for research that focuses on addressing system-level factors that drive increased risk. Understanding the specific health needs of Black and female youth with I/DD is critical to ensure the formation, implementation, and monitoring of equitable delivery of health services.

Project description:ObjectivesTo explore characteristics of sexual abuse within residential settings for people with an intellectual disability and to map out measures undertaken and improvement plans made by healthcare organisations after sexual abuse.DesignDescriptive analysis of reports about sexual violence against persons with an intellectual disability submitted to the Dutch Health and Youth Care Inspectorate by healthcare organisations.SettingResidential settings for people with an intellectual disability in The Netherlands.Selection186 incident reports submitted to the Inspectorate between January 2017 and December 2019 were included.Results125 incident reports concerned sexual abuse by fellow clients and 61 reports concerned sexual abuse by professionals. Client perpetrators were predominantly male whereas almost 30% of the abusing professionals were female. The majority of the perpetrating professionals were unlicensed professionals. Clients who committed sexual abuse were mostly relocated to another residential setting. Most healthcare organisations invested in education and training for employees instead of improving the sexual education programme for clients after an incident of sexual abuse. If there was a strong suspicion of sexual abuse by a professional, resignation followed in most cases. In just two cases, the perpetrating professional was reported to a warning registry.ConclusionsA small amount of the perpetrating professionals held a licensed profession, which makes it challenging to address this form of sexual abuse through healthcare regulation. It raises the question why warning registries are not engaged more often after alleged sexual abuse. Constantly relocating abusing clients might endanger the (sexual) safety of clients in these new environments. Previous literature suggests that adequate sexual education regarding social skills and sexual behaviour is very effective for the majority of clients who commit sexual abuse. Healthcare organisations could take up a more prominent role in this to ensure safety for their own clients and for clients residing elsewhere.

Project description:BackgroundThe field of long COVID research is rapidly evolving, however, tools to assess and monitor symptoms and recovery of the disease are limited. The objective of the present study was to develop a new patient-reported outcomes instrument, the Symptoms Evolution of Long COVID‑19 (SE-LC19), and establish its content validity.MethodsThe 40-item SE-LC19 instrument was developed based on patient-relevant empirical evidence from scientific literature and clinical guidelines that reported symptoms specific to long COVID. A 2-part mixed-method approach was employed. Part 1: Qualitative interviews with a purposive sample of 41 patients with confirmed long COVID were conducted for the content validation of SE-LC19. During cognitive debriefing interviews, patients were asked to describe their understanding of the instrument's instructions, specific symptoms, response options, and recall period to ensure its relevance and comprehensiveness. Five clinicians of different medical specialties who regularly treated patients with long COVID were also interviewed to obtain their clinical expert opinions on SE-LC19. Part 2: Exploratory Rasch Measurement Theory (RMT) analysis was conducted to evaluate the psychometric properties of the SE-LC19 data collected during the interviews.ResultsOverall, patients reported that the instructions, questions, recall period, and response options for SE-LC19 were comprehensive and relevant. Minor conceptual gaps reported by patients captured nuances in the experience of some symptoms that could be considered in future studies. Some patients suggested a revision of the recall period from 24 h to 7 days to be able to capture more symptoms given the waxing and waning nature of some symptoms. Clinicians found the instrument comprehensive with minimal suggestions regarding its content. Exploratory RMT analyses provided evidence that the SE-LC19 questionnaire performed as intended.ConclusionThe present mixed-methods study in patients with confirmed long COVID supports the content validity and applicability of the SE-LC19 instrument to evaluate the symptoms of patients with long COVID. Further research is warranted to explore the psychometric properties of the instrument and refine a meaningful and robust patient-relevant endpoint for use in different settings such as clinical trials and clinical practice to track the onset, severity, and recovery of long COVID.

Dataset Information

Inclusive approaches to developing content valid patient-reported outcome measure response scales for youth with intellectual/developmental disabilities.

Background

Methods

Results

Conclusion

Publications

Inclusive approaches to developing content valid patient-reported outcome measure response scales for youth with intellectual/developmental disabilities.

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