Quality of life among children with Inborn Errors of Immunity at king Abdullah Specialized Children Hospital, Riyadh, Saudi Arabia: A Cross Sectional Study

Abstract

Background: Inborn Errors of Immunity (IEI) include a vast array of immunity disorders that are diagnosed early in life and that are associated with a high disease burden. Studies on the burden of IEI on the quality of life in Saudi Arabia are scarce. The aim of this study was to assess quality of life of IEI patients at a major tertiary care hospital in Riyadh, Saudi Arabia.

Methods: This is a cross-sectional survey-based study of all IEI patients using the validated PedsQL, version 4 questionnaire that aims at assessing the quality of life of IEI patients as reported by patients or one of their parents. Data was analyzed using the Statistical Package for Social Sciences (SPSS) version 26.

Results: The study included 51 IEI patients, more than half of which were between 2-12 years of age (63%). Data was mostly collected from one of the parents (84%). The lowest score was reported for school functioning with a mean score of 72.7 (SD=31.4). Emotional functioning score were significantly lower among those older than 18 years and those between 6-12 years old (P=0.04). Residing in the capital, was also significantly associated with higher physical functioning and total scores (P=0.01 and 0.03 respectively). Furthermore, social score was significantly higher among those with an unemployed parent (P=0.03).

Conclusion: This study showed IEI patients suffer from a low quality of life score that influences both school and emotional functioning. Quality of life scores were significantly associated with parent’s employment status and patients’ age. Living in proximity to healthcare centers, was associated with higher physical functioning and total scores. Healthcare providers managing IEI patients in Saudi Arabia should evaluate their quality of life to ensure optimal school and emotional wellbeing of the child.