Promoting Excellence : ESRD Table of Contents : Executive Summary of Findings from the ESRD Quality of Life for Dialysis Patients Questionnaire Study

Background

The purpose of this study was to investigate the impact of physiological, psychosocial, and spiritual factors on the quality of life (QOL) among end-stage renal disease (ESRD) patients receiving dialysis treatment.

Methods

Patients receiving treatment (n=165) were asked to respond to a series of questions focusing on various dimensions of QOL. Questions asked by interviewers included the McGill Quality of Life Questionnaire (MQOL), the Satisfaction with Life Scale (SWLS), and two patient satisfaction scales, including an adaptation from the Kidney Disease QOL instrument. In addition, a new scale was administered for the purpose of exploring the effects of spiritual beliefs and patient supports on overall quality of life. Demographic information also was collected on each patient to determine variations in outcomes based on these factors. And finally, medical information was also collected. This information included length of time on dialysis, the clinician’s Karnofsky rating, and average level of hemoglobin, albumin, and Kt/V ratio.

The analysis strategy had two main objectives. The first objective was to document in an exploratory analysis, the relationship between various medical and psychosocial characteristics and self-perceived QOL among dialysis patients. The second objective was to explore the development of a new scale that could be used to measure additional dimensions of QOL.

Results

Although biomarkers such as levels of albumin and hemoglobin and Kt/V have been traditionally used by nephrologists to assess QOL, this study clearly indicated that other factors such as psychosocial factors play a significant role in defining overall QOL. The study also indicated that two factors – spiritual beliefs and support network – could be assessed to define overall patient QOL. Factor analysis and reliability analysis (as a measure of internal consistency) of the scale items were conducted to determine the factors and explore the overall stability of the measures, respectively. The two resulting factors accounted for 45% and 19% of the variance, respectively, for a total of 64%. The final standardized item alpha was .84. In addition, a split-half reliability analysis indicated strong correlations between one half of the variable set and the other (correlation = .80). The “spiritual belief” subscale was significantly associated with the following subscales/scales and other variables: The MQOL overall score, the MQOL Existential and Support Subscales, the MQOL single item measure, the SWLS, and a number of indices related to patient interactions with dialysis staff, including encouragement from dialysis staff. The “support network” subscale was significantly associated with the following subscales/scales and other variables: The MQOL Existential subscale and the MQOL Support subscale, and the average level of satisfaction with doctors and staff. Whites compared to minorities were likely to score significantly lower on the support network subscale, while minorities scored significantly lower on the MQOL Psychological subscale compared to whites.

It is also interesting to note that neither the total score on the “spiritual belief” nor “support network” scales was associated with number of symptoms reported by patients on the McGill QOL Questionnaire, or with the various biomarkers that were studied. However, there was a significant inverse dose-response relationship between the MQOL total score, the MQOL physical subscale, the single item global measure of QOL and patient’s report of symptoms. The total score on the SWLS also was significantly and inversely associated with the number of symptoms reported.

Further analysis of patients reporting symptoms revealed additional interesting findings. For the spiritual beliefs subscale, 67.7% of responses associated with pain-related symptoms fell below the median score on the “spiritual beliefs” subscale compared to only 46.6% and 49.3% of the “no symptom” and “other symptom” groups, respectively. The same pattern was identified for the support network subscale: 64.5% of responses in the pain category fell below the median score of the support index compared to 47.8% and 48.7% of the “no symptom” and “other symptom” categories. These results point to the potential association between symptom and quality of life and points to pain management as a particularly important focus of intervention for clinicians.

The results of this study are promising and indicate potential points of intervention for improving the quality of life among dialysis patients. In addition, the lack of any significant association between the various biomarkers studied and quality of life indicate that clinicians need to consider the relative importance of other dimensions from the patient’s perspective. The results also indicate the utility of a brief, 9-item scale that can be used to document the patient’s spiritual beliefs and support network. Although more research is needed to further validate this scale, when administered in conjunction with other QOL scales, it can provide a more comprehensive assessment of a patient’s psychosocial needs.

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Promoting Excellence in End-of-Life Care is a National Program Office of The Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying persons and their families. Visit PromotingExcellence.org for more resources.

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