QUALITY OF LIFE AND BURDEN OF CARE OF FAMILY CAREGIVERS OF FILIPINO PATIENTS ON HEMODIALYSIS AND PERITONEAL DIALYSIS

A caregiver is a person who tends to the needs of a person with short- or long-term limitations due to illness, injury, or disability. Caregivers play a pivotal role in the management of chronic kidney disease patients such as in medication administration, preparation of special diets, personal care, transportation, and emotional support. They look after the patients throughout the course of the disease and are closely involved in decision-making and care. Aside from these, they also need to manage financial and psychosocial problems that may arise. Caregivers in the Philippines tend to be family members, most of whom have no experience in caring for sick patients. The responsibilities can become burdensome and may lead to emotional distress which may affect their quality of life.

In recent years, there has been an increasing global epidemic of end stage renal disease (ESRD) requiring dialysis. The onset of ESRD and subsequent recommendation of dialysis as a treatment option involves a change in lifestyle for both patients and their caregivers. Dialysis as a medical intervention increases physical, mental, financial, and social demands. The effects of undergoing dialysis have been studied in patients, however, the impact on their caregivers is less discoursed.

 The World Health Organization defines quality of life as an individual’s perception of their position in life in the context of the culture, the value systems in which they live and in relation to their goals, standards, expectations, and concerns. Burden of care, on the other hand, is the strain or load borne by a person who cares for a chronically ill, disabled, or elderly family member. Studies on the effect of different modes of renal replacement therapy on the burden of care and QOL showed higher burden scores in caregivers of patients on hemodialysis (HD) compared to caregivers of patients on peritoneal dialysis (PD). However, it has also been observed that burden and QOL scores vary among cultures. 

This study therefore aims to comparatively assess the quality of life and burden of care of family caregivers of Filipino patients on hemodialysis and peritoneal dialysis.

Study Design

This was an observational, cross-sectional, single center study carried out from August 1 to 

October 30, 2022.

Inclusion Criteria

Eligible participants included family caregivers of patients who have been on hemodialysis or

peritoneal dialysis for at least 3 months, aged 18 years old and above and currently enrolled at the

outpatient peritoneal or hemodialysis clinics of NKTI.

Study Population and Setting

Family caregivers of HD and PD patients at the National Kidney and Transplant Institute (NKTI), 

a tertiary referral center in the Philippines, were recruited and identified using convenience

sampling. A total of 186 respondents were gathered for this study. Both relatives with patients 

undergoing peritoneal dialysis or hemodialysis had a sample count of 93.

Materials and Methods

Data were collected using three questionnaires:

1.  General questionnaire: It was used to collect sociodemographic (i.e. sex, age, civil status, educational background, occupation), clinical data (i.e. comorbidities, medical treatments) and also included questions related to patient care (e.g. type of relationship –kinship– with the patient, duration of care).

2.   Zarit burden interview (ZBI-22) questionnaire: It is the most widely used tool for measuring the level of subjective burden among caregivers and has been validated across many populations, care-recipients (i.e. dementia, physical illness, mental illness), and languages including Filipino. It consists of 22 items using a Likert scale ranging from 0 (never) to 4 (always). A unique burden index was obtained with a score ranging from 0 to 88 points. Total scores were interpreted as follows: 0 to 21 little or no burden, 22 to 46 mild to moderate burden, 47 to 55 moderate to severe burden, and 56 to 88 severe burden.

3.    Abbreviated WHO Quality of Life (WHOQOL-BREF) questionnaire: This is the short version of the WHOQOL-100, contains 26 items and addresses 4 QOL domains: physical health (7 items), psychological health (6 items), social relationships (3 items) and environment (8 items). Two other items measured overall QOL and general health. Items were rated on a 5-point Likert scale (low score of 1 to high score of 5). The mean score of items within each domain was used to calculate the domain score. Mean scores were then multiplied by 4 in order to make domain scores comparable with the scores used in the WHOQOL-100. A cut-off of < 60 for overall quality of life obtained excellent sensitivity and negative predictive value for tracking adults with probable worse quality of life. The Filipino version has been validated statistically and culturally.

These questionnaires were made available in both English and Filipino.

Statistical Analysis

Descriptive statistics was used to summarize the general and clinical characteristics of the participants. Frequency and proportion were used for categorical variables (nominal/ordinal), mean and standard deviation for normally distributed interval/ratio variables, and median and range for non-normally distributed interval/ratio variables. Quality of life scores and burden scores were compared between family caregivers of patients on hemodialysis and peritoneal dialysis. Correlation between quality of life scores and burden scores were also explored in each dialysis modality. Mean comparison of quality of life and burden scores were computed via Mann-Whitney U-test. Association between categorical variables were tested using chi-square or Fisher-exact test. Correlation analysis between continuous variables was done using Spearman rho coefficient. All valid data was included in the analysis. Missing data was neither replaced nor estimated. Null hypothesis was rejected at 0.05α-level of significance. R program was used for analysis.

We included a total of 186 respondents and family caregivers of those undergoing HD or PD were equally represented (n=93 each). Between these two groups, statistically significant differences were noted in terms of marital status, relationship to patient, highest educational attainment, and years relative was on dialysis. Overall, the median age was 43 years old, youngest was 18 and oldest was 69 years old, more than half were female (73.12%), 80% had no known illness at time of survey, and 68% were unemployed. In terms of relationship to the patient, most were spouses or common-law partners (33%), children (29.67%), and parents (18.28%). In addition, 48.92% of participants were college graduates.

Based on the WHOQOL-BREF domain scores (Table 1), only the environment domain which includes financial resources, physical safety and security, home environment, opportunities for acquiring information and skills, physical environment, and transport, showed statistical difference between the two groups, with those in the PD group having a higher median score (56 vs 50, p=.007). On the other hand, the two groups generally had high quality of life scores in the other domains.

Physical (Q4,10,15,16,17,18)

Most respondents for both groups reported that physical pain prevented them a little from doing what they needed to do (HD=25, 38%; PD=44, 47%). They also only needed little treatment for these pains to function in their daily lives (HD=43, 46%; PD= 40, 43%). In terms of having energy for everyday life, the frequency for the option “mostly” had the highest count (HD= 30, 32%; PD=33, 35%). Neutral responses were observed most for items regarding being able to get around, being satisfied with sleep, and being satisfied with their abilities to perform daily living activities. It can be noted that in terms of the physical aspect of quality of life, the item regarding how well the respondents of hemodialysis are able to get around had the highest frequency of very dissatisfied answers (HD= 14, 15%). 

Psychological (Q5,6,7,11,19,26)

Generally, respondents for both groups reported very much feeling that their lives are meaningful (HD= 30, 32%; PD= 37, 40%). Although it is worth noting that both groups only had neutral perception in terms of how much they enjoy life (HD= 39, 42%; PD= 40, 43%). Most respondents are very much able to concentrate and mostly accept their body appearance. They also perceive themselves to be content with themselves. Results show that respondents seldomly have negative feelings such as blue mood, despair, anxiety, and depression (HD=39, 42%; PD= 53; 57%)

Conclusions