Exploring the Concept of Health-related Quality of Life for Patients with End-stage Renal Disease on Haemodialysis in the Eastern Region of Saudi Arabia

The concept of health-related quality of life (HRQoL) had been used as a patient reported outcome measure in healthcare settings. It has been conceptualised and measured using validated instruments in the Western scientific community. However, in the Saudi literature, the true meaning of this concept is still lacking. The aim of this study is to explore the gap in literature and define the concept of HRQoL, identify its key domains and conceptualise it as perceived specifically by patients with renal failure and undergoing haemodialysis in Saudi Arabia.This PhD included two strands, an empirical qualitative study and a critical analysis of the HRQoL concept and its measurement in the Western as well as the Saudi literature. Using qualitative research methods, the empirical study was conducted in one centre in the Eastern Region of Saudi Arabia. Twenty two In-depth qualitative interviews were conducted in the Arabic language, recorded, transcribed and translated into English. Thematic analysis was performed to analyse the data as the transcripts were coded, the categories identified and the themes generated. The conceptual analysis of HRQoL was carried out after the review of the Western literature on the quality of life (QoL) conceptual models and the measuring instruments used in renal literature. Systematic review of the Saudi HRQoL literature was performed as well to understand the meaning and methods of measurement of the concept of HRQoL. The conceptual analysis of HRQoL revealed that the concept is poorly defined in the Saudi literature; its measurement was based on instruments that are not culturally-adapted. Hence the findings are subjected to questions of validity and reliability. The QoL conceptual models have been developing in the Western literature as well as measuring instruments for patients with renal failure. However, the adoption of these models or instruments is critical due to social, cultural and religious variations between Saudi Arabia and the Western societies.Seven themes defining HRQoL emerged from the qualitative data; these reflected the subjectivity of the concept. The domains of HRQoL were the physiological, social, psychological, religious and vocational domains. Each of those domains was defined by determinants that affect other domains and the overall HRQoL. These were synthesised into a single definition, which incorporated all five domains. A model of HRQoL of patients undergoing haemodialysis in Saudi Arabia was developed explaining the relationship between the key domains and HRQoL. Healthcare services were discussed as a factor that affects the health status of patients and plays an indirect role in the life quality of this patient group. Hence it was considered as a factor rather than a domain.This study, including the conceptual analysis and the empirical study, illustrates that the concept of HRQoL is highly individual and is affected by the views of individuals living in a specific culture. Additionally, it is affected by the social, cultural and religious backgrounds of those individuals. The conceptualisation of HRQoL in this study was almost similar to the Western conceptualisation, however, the relationships between the key domains of HRQoL and their determinants differed. The social and religious domains were highly influenced by the Arabic culture and the Islamic religion. HRQoL in patients with ESRD in the Eastern Region of Saudi Arabia has a different meaning and conceptualisation from that seen in comparable Western literature. The assessment of HRQoL of patients with renal failure and on haemodialysis in Saudi Arabia requires a culturally-adapted instrument. This would ensure valid and reliable results that could be used in decision-making and the planning of care.