Patient experience (PX) among individuals with disabilities in Japan: a mixed-methods study

Abstract

[Background] People with disabilities (PWDs) tend to be disadvantaged in terms of receiving preventive medicine and medical checkups. About 7.6% of the Japanese population is estimated to have a disability. Although patient experience (PX) is an effective measure of patient-centeredness, little is known about the PX of PWDs. The present study aimed to compare the PX of PWDs with those of the non-disabled both quantitatively and qualitatively. [Methods] The present study involved a questionnaire survey and a free-response question on the survey form. The quantitative part of the study involved a comparison of JPCAT scores between PWDs and non-disabled participants. JPCAT is composed of five primary care principles: First contact, Longitudinality, Coordination, Comprehensiveness (service provided and service available), and Community orientation. Descriptive statistics were used to assess age, sex, years of education, self-rated health status, and type of disability (for PWDs). Multivariable analysis was performed using a linear regression model to detect differences between PWDs and non-disabled participants in total and domain-specific JPCAT scores. The model included the following confounding variables: age, sex, years of education, and self-rated health status. The qualitative part of the study involved a thematic analysis of answers to the free-response question. [Results] Data from 338 participants (169 PWDs and 169 non-disabled participants) were analyzed (response rate of 36% for PWDs). After adjusting for age, sex, years of education, and self-rated health status, PWD scores were significantly lower than those of non-disabled participants for the Longitudinality, Community Orientation, and Comprehensiveness (services available) domains of the JPCAT. Qualitative analysis yielded six themes, each of which was further divided to have Disability-Specific and General themes. [Conclusions] JPCAT scores in PWDs were significantly lower than those of non-disabled participants for the Longitudinality, Community Orientation, and Comprehensiveness (services available) domains. Qualitative analysis revealed that PWDs shared several themes with non-disabled participants, but also to face unique challenges due to disabilities, such as the lack of a health care provider familiar with disabilities and the insurance transition at age 65, a unique feature of the Japanese health care system. [Trial registration] The study was a non-interventional, observational research trial, and thus registration was not required.