From a computerized search of the medical literature using multiple databases, the group concluded that assessment of quality of life in ESRD patients treated with hemodialysis has been a concern for nephrologists for almost two decades. However, the proper method of measuring quality of life in ESRD patients remains controversial. Many standard instruments are generalizable but focus heavily on patients' functional status. The Karnofsky Performance Scale and the Medical Outcomes Study 36-Item Short Form Health Survey have been the most widely studied in the ESRD population. The Karnofsky Performance Scale largely evaluates quality of life from the perspective of functional status.
Studies using these instruments have shown that ESRD patients' functional status is significantly below that of normal and chronically ill populations. The subgroup found that measures of satisfaction with life are often uncorrelated with functional parameters. Interestingly, satisfaction-with-life measures (assessments of happiness) generally do not predict survival of patients with ESRD. The subgroup knew of no studies to examine the relationship between ESRD patient satisfaction with life measures and patient withdrawal from dialysis. It is not known if dialysis patients' satisfaction with life can be improved with more comprehensive care.
The subgroup considers better renal palliative care to be part of comprehensive care. Renal palliative care includes pain and symptom management, advance care planning, psychosocial support, and attention to spiritual issues. A search of the medical literature highlighted the significant contributions of Paul Kimmel, MD to the literature on ESRD patient quality of life. Dr. Kimmel subsequently joined the workgroup and participated in subgroup conference calls from December 2000 through the completion of the project.
Subgroup members were quite diverse: at one time or another, there were three nephrologists, Drs. John Leggat, Paul Kimmel, and Alvin Moss; a palliative care physician, Dr. Gary Reiter; three nephrology nurses, Sharon McCarthy, Cathy Greenquist, and Susan Pfettscher; a nephrology nurse-renal administrator, Helen Danko; a renal dietitian, Lori Lambert; and a health policy analyst and ESRD patient, John Newmann. In its first meeting, the subgroup agreed that patients' perceptions may be more important than objective measures. The subgroup concluded that it was important to "get inside patients' heads," i.e., to become patient-centered, in order to learn why so many patients grow dissatisfied with their QOL on dialysis.
Subgroup members cited their clinical experience with ESRD patients who expressed a strong desire to discuss beliefs or spiritual concerns as a way to help them adjust to and live with ESRD. As one article identified in the literature search noted," ...many patients believe spirituality plays an important role in their lives, that there is a positive correlation between a patient's spirituality or religious commitment and health outcomes, and that patients would like physicians to consider these factors in their medical care." As a conclusion of the literature scan, the subgroup noted minimal attention in the nephrology quality of life literature to spiritual concerns. The subgroup also concluded that there has been insufficient attention to ESRD patient psychosocial support and status as it relates to patients' ratings of quality of life.
The subgroup determined that a useful contribution to the care of ESRD patients would be to develop an improved quality of life instrument. Such an instrument would need to include measures of psychosocial status and support, patient satisfaction with life, patient satisfaction with their nephrologist and dialysis staff relationships, existential issues, and the role of faith in their lives. The goals of developing this instrument were:
Among the quality of life instruments found in the literature scan, the subgroup selected for their instrument the McGill Quality of Life Questionnaire, the Diener Satisfaction with Life Scale, questions from the KDQOL instrument by the RAND Corporation and from the DiMatteo and Hays Patient Satisfaction with Care questionnaire, and spirituality questions developed by subgroup chair John Newmann, PhD, MPH (see below). The subgroup chose these measures recognizing that a mix of instruments would probably be necessary to appreciate the concerns it had identified.
In the choice of instruments, the subgroup consulted with Robin Cohen, PhD, the principal developer of the McGill Quality of Life Questionnaire; Karen Steinhauser, PhD, a nationally recognized investigator of factors important to patients and families at the end of life; and Ira Byock, MD, a nationally recognized expert in end-of-life care who has experience in quality of life instrument design and validation. These individuals concurred that the McGill instrument was the best choice among those available and validated in a chronic disease population.
The subgroup also consulted with Melanie Merriman, PhD, a specialist in outcome measurement. Dr. Merriman recommended that the subgroup adopt a three-phase approach to evaluating the instrument they had developed. The first phase would determine if the instrument identified concerns that were very important to patients; in other words, did the instrument ask the right questions? If so, the second phase would validate the instrument against other validated instruments. If the instrument performed well in the validation study, then the third phase would develop a process for implementing the use of the instrument by those caring for ESRD patients.
The subgroup asked Seth Emont, PhD, and Ronald Althouse, PhD, both social scientists with experience in research methodology, to review the design of the instrument to be sure that it lent itself to analysis for the types of questions the subgroup was asking. Both were favorably impressed with the instrument and agreed to serve as consultants for data analysis once interviews were completed using the instrument.
The subgroup secured $10,000 in funding from the Promoting Excellence in End-of-Life Care program to pay for the first phase in instrument evaluation, and contracted with West Virginia University to carry out the work. The consultants recommended that 200 to 300 interviews be conducted for the first phase in instrument evaluation. After obtaining approval from their respective Institutional Review Boards for the Protection of Human Subjects, subgroup members Danko, Kimmel, Leggat, Moss, and Pfettscher each agreed to oversee the interviews of 50 to 60 patients in dialysis units to which they had access. The Survey Research Center at West Virginia University was responsible for data entry and analysis. Dr. Althouse, Director of the Survey Research Center, worked with Dr. Moss to develop a scannable interview form that would facilitate data entry. At the time of this report, interviews and data analysis were completed. The Quality of Life Questionnaire for Dialysis Patients was developed by the QOL subgroup.
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Promoting Excellence in End-of-Life Care is a national program of The Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.