Patients receiving haemodialysis (HD) experience substantial symptom burden. These symptoms are associated with reduced physical function, poor treatment tolerance and impaired health-related quality of life. These symptoms are complex and are often undetected by individuals or health care providers (HCPs). A number of symptoms, including fatigue and depression, are associated with poor patient health, increased risk of hospitalisation and mortality. Physical and emotional symptoms are often not diagnosed or treated; however, patients often use a variety of self-management strategies to meet the challenges of these symptoms. There is a lack of knowledge regarding symptom burden and the experiences of patients receiving HD and their caregivers, particularly in Saudi Arabia. Therefore, this study aimed to explore symptom burden, the factors predicting symptoms and the self-management strategies in patients undergoing HD. It also aimed to assess the level of burden in the caregivers of these patients, the relationship between patient and caregiver burden, and the factors that may influence the reported level of caregiver burden.
The study used a mixed-methods, sequential, explanatory design drawing on the three concepts (influencing factors, symptoms experience, and consequences) of the Theory of Unpleasant Symptoms (TOUS) to explore symptoms burden and identify its relationships with influencing factors and consequences. Phase 1 involved a cross-sectional study design, with a convenience sample of 141 patients, who were recruited in King Khaled hospital, Saudi Arabia. Thirty-two physical and psychological symptoms were measured using the Chronic Kidney Disease-Symptom Burden Index (CKD-SBI). Additionally, 61 caregivers completed the Arabic version of the Zarit Burden Interview (ZBI-22), where 0 indicated low caregiver burden and 88 indicated severe burden, to identify the level of burden in the caregivers of patients on maintenance HD.
Phase 2 of the study was a qualitative descriptive design, involving semistructural interviews, with 13 eligible patients currently receiving HD. The selection of patients for interview was based on each patients’ total CKD-SBI score, with individuals recruited from the lowest, median and highest percentiles. Additionally, 9 caregivers of these patients were also recruited and interviewed.
The mean age of patients was 53 ± 17 years, while caregiver’s tended to be younger, with a mean age of 36 ± 13 years. 76 (54%) of patients were male and 65 (46%) were female. The majority of caregivers were female (n= 48, 79%) and 90% (n=55) of caregivers lived with the care recipient. Of the 32 measured symptoms, patients reported having a mean of 10 ± 5. The most prevalent symptoms reported were fatigue (72%), followed by itching (63%), bone pain (62%), and muscle cramps (61%).
Being female, unmarried, and having one or more health conditions demonstrated a statistically significant association with increased symptom burden in patients receiving HD. The duration of dialysis and travel time to receive dialysis was not found to be associated with symptom burden. The mean total caregiver burden scores reported by caregivers was 22 ±14. Caregiver burden was positively associated with being older and female, but not with cohabiting with the patient. Cultural beliefs and religion had a significant impact on the levels of reported symptoms, as well as reported caregiver burden. The study also found a positive correlation between the total number of symptom (symptom prevalence), in patients receiving HD and caregiver burden.
Three overarching themes were revealed from patient interviews, the holistic impact of symptom burden, factors influencing symptoms and symptom management. For caregivers of patients receiving HD, three themes were identified in caregiver interviews: positive caregiving experiences, factors influencing caregiver experience and negative caregiving experiences.
This is the first study which explores the experience of symptoms and the impact of symptoms on patients receiving HD in Saudi Arabia. The process of integration between the quantitative and qualitative phases of the study, demonstrated different levels of agreement and understanding of symptoms in patients undergoing HD and burden in caregivers.
In conclusion, future research should consider symptom assessment, effective patient care and the promotion of appropriate symptom management in patients receiving HD. HCPs need to be aware of the interrelation between symptom, which increase symptom burden. A reduction in symptom burden in patients with HD and other chronic illnesses may be achieved if policy makers and clinical staff focus on groups of symptoms and target the main influencing symptom. Early recognition and determining the people at high-risk of experiencing greater symptom burden needs to be undertaken to avoid its impact on patients life and enable early management and referral.
|Date of Award||Jul 2020|
|Sponsors||University of Hail|
|Supervisor||Peter O'Halloran (Supervisor), Helen Noble (Supervisor) & Helen McAneney (Supervisor)|
- symptom burden
- caregiver burden
- renal failure
- chronic kidney disease