Abstract
Background: Owing to a scarcity of data or other causes, patient research on the orphan population is lacking in most societies. Consequently, the primary goal of this study was to explore quality of life (QOL) and quality of care (QOC) among orphan patients (OPs) receiving tertiary healthcare services in Saudi Arabia (SA).
Method: This study used a cross-sectional, quantitative survey design. Participants included 216 OPs either currently undergoing or who had undergone treatment for common chronic diseases (CDs) (e.g. cardiovascular disease, cancer, stroke and arthritis) during the past 12 months. The survey utilised the brief form from the World Health Organization Quality of Life (WHOQOL-BREF) tool and evaluated healthcare access and effectiveness domains to scrutinise the socio-medical patterns of OPs based on their current medical episodes.
Results: The descriptive analysis indicated that OPs' overall QOL reached a moderate level (M = 3.90). Similarly, participants reported relatively high levels of healthcare access and treatment effectiveness (M = 4.14 and M = 4.29, respectively). Stroke patients reported the highest QOL score (M = 3.95), and groups of patients with other CDs reported greater access to healthcare and more effective treatment maintenance compared to the other groups (M = 4.19 and M = 4.43, respectively). Regression analysis was conducted to predict overall QOL based on perceived QOC, and access explained only 6.5 % of the variance. An analysis of variance showed significant differences only between OPs with cardiovascular disease and cancer (P =.001), with the former reporting better access to tertiary healthcare services than the latter.
Conclusions: Although some CD patients reported relatively acceptable levels of access to healthcare and receipt of effective treatment, the improvement of OPs' QOL and QOC poses a serious challenge for health policymakers.