Primary immunodeficiency (PID) is a chronic condition that can substantially affect patients’ health-related quality of life (HRQoL) and their experience with healthcare services. While HRQoL and patient satisfaction have been previously studied in PID, limited data exist on how demographic factors interact with specific HRQoL domains to influence patient satisfaction. This study aimed to evaluate HRQoL and patient satisfaction in adults with PID, focusing on demographic influences and the relationship between HRQoL and satisfaction domains.
This cross-sectional study included adult patients diagnosed with PID. HRQoL was assessed using the Medical Outcomes Study 36-Item Short Form Health Survey (RAND-36), and patient satisfaction was evaluated using the Patient Satisfaction Questionnaire Short Form (PSQ-18). Descriptive statistics summarized participant characteristics and outcome measures, while correlation analyses and general linear models examined associations between age, sex, HRQoL domains, and patient satisfaction domains.
A total of 34 adult patients were included, with a male-to-female ratio of 2.1:1, and a mean age of 34.9 ± 13.6 years. Participants reported moderate to high HRQoL across most domains, with preserved physical and social functioning. Energy/fatigue was the most impaired domain, indicating a persistent disease burden, while emotional well-being and bodily pain showed intermediate scores. Overall patient satisfaction was high across most PSQ-18 domains, with comparatively lower satisfaction related to accessibility and convenience of care. Increasing age was associated with poorer social functioning and general health. Female patients reported a greater emotional burden, higher satisfaction with physicians’ interpersonal manners, and lower satisfaction with financial aspects of care. Significant associations between patient satisfaction and HRQoL were primarily observed in emotional well-being and social functioning, whereas physical HRQoL domains showed no significant correlations.
Adults with PID generally report good physical and social functioning and high satisfaction with healthcare services. However, fatigue, emotional well-being, and social functioning remain key areas of impairment, particularly among female and older patients. The strong association between patient satisfaction and emotional and social HRQoL domains underscores the importance of integrating psychosocial support into routine PID management to enhance patient-centered outcomes.
