Psychometric Evaluation of the German Version of the Perceived Access to Healthcare Questionnaire in a Sample of Individuals with Rare Chronic Diseases-Reference-Cited by-同舟云学术

Psychometric Evaluation of the German Version of the Perceived Access to Healthcare Questionnaire in a Sample of Individuals with Rare Chronic Diseases

Published:2024-03-15 Issue:6 Volume:12 Page:661
ISSN:2227-9032
Container-title:Healthcare
language:en
Short-container-title:Healthcare

Author:

Wehrli Susanne¹²³⁴^ORCID,Dwyer Andrew A.⁵⁶^ORCID,Landolt Markus A.¹²³⁴^ORCID

Affiliation:

1. Department of Psychosomatics and Psychiatry, University Children’s Hospital, University of Zurich, 8032 Zurich, Switzerland

2. Division of Child and Adolescent Health Psychology, Department of Psychology, University of Zurich, 8032 Zurich, Switzerland

3. Children’s Research Center, University Children’s Hospital, University of Zurich, 8032 Zurich, Switzerland

4. University Research Priority Program “ITINERARE–Innovative Therapies in Rare Disease”, University of Zurich, 8032 Zurich, Switzerland

5. William F. Connell School of Nursing, Boston College, Chestnut Hill, Boston, MA 02467, USA

6. P50 Massachusetts General Hospital—Harvard Center for Reproductive Medicine Boston, Boston, MA 02114, USA

Abstract

Access to healthcare is multifaceted and poses significant challenges for individuals with chronic and rare diseases (RDs). This study aimed to conduct a psychometric evaluation of the German version of the Perception of Access to Healthcare Questionnaire (PAHQ) among individuals with RDs. We conducted an evaluation of the PAHQ using a sample of 271 adults with an RD diagnosis. The 31-item instrument underwent evaluation including a comparison of three different confirmatory factor models (CFA). Subsequent steps involved item removal, reliability analysis (computation of Cronbach’s alpha), and analysis of criterion-related validity. The six-factor model showed the best fit to the data and was selected for further examination. Subsequently, six items were removed. Fit indices for the final model were acceptable. Cronbach’s alpha ranged from 0.75 to 0.91 for the six subscales, except for the availability subscale which exhibited the lowest value (0.64). In terms of criterion-related validity, different skills relating to the navigation of access dimensions were significantly correlated with corresponding PAHQ subscales, thus confirming validity. The capacity of the PAHQ to guide targeted interventions and facilitate cross-population comparisons positions it as a valuable instrument for advancing healthcare access research and promoting equitable access to care, particularly for individuals with rare and chronic diseases.

Funder

University of Zurich

Publisher

MDPI AG

Link

https://www.mdpi.com/2227-9032/12/6/661/pdf

Reference57 articles.

1. Posada de la Paz, M., Taruscio, D., and Groft, S.C. (2019). Rare Diseases Epidemiology: Update and Overview, Springer International Publishing.

2. Orphanet (2023, May 25). About Rare Diseases. Available online: http://www.orpha.net/consor/cgi-bin/Education_AboutRareDiseases.php?lng=EN.

3. (2023, May 25). EURORDIS Resolution4Rare: Global Campaign for the First UN Resolution on Persons Living with a Rare Disease. Available online: https://www.eurordis.org/resolution4rare-global-campaign-for-the-first-un-resolution-on-persons-living-with-a-rare-disease/#:~:text=The%20Resolution%20is%20an%20important,living%20with%20a%20rare%20disease.

4. Estimating cumulative point prevalence of rare diseases: Analysis of the Orphanet database;Lambert;Eur. J. Hum. Genet.,2020

5. Public Health and Rare Diseases: Oxymoron No More;Valdez;Prev. Chronic Dis.,2016