Quality of Life

Can one have quality of life while dying? If you asked the general population, many would certainly answer no. The public now fears that their dying will be marred by pain, suffering, and a limited quality of life. To the contrary, for some dying has been the “best year” of one’s life. The guiding principle at the heart of the palliative care intervention is the notion of quality of life (Cohen 1995).

Over the past two decades, numerous instruments have been developed to measure health related quality of life. Increasingly, it has been recognized that mortality provides a limited measurement of the outcomes of cancer treatment. Both European and American cancer clinical trial organizations have developed “quality of life” instruments to assess the outcomes of cancer interventions.

The aim of this briefing book is to review those instruments that measure outcomes of medical care at the end of life. For simplicity, we have focused on the last month, a time period which has been shown in cancer patients to be the time of greatest symptom burden and decline in function. As Dr. Anita Stewart has outlined, additional domains are needed to measure quality of life at the end of life. Spirituality and transcendence has been long neglected. For dying, the degree which this domain is addressed may greatly impact on the patients quality of life. Eric Cassell noted that “Transcendence is probably the most powerful way in which one is restored to wholeness…” when faced with a serious illness or life-defining illness.

In this section, we review instruments developed to measure quality of life. Many of these same measures are reviewed under other domains when questions are applicable to that domain (e.g,. symptoms are measured in the McGill Quality of Life Questionnaire, so we reviewed instruments under both domains).

A literature review of the Medline database was conducted. Using the search terms measurement, instrument, quality of life and (terminal care or palliative care), we found a total of 54 articles published between 1983 to 1997. In addition, we selected references from the methods section of those articles pulled, and the George Washington University online catalogue was searched for relevant books.

Based on the review of these 54 articles, we found 26 potential instruments for consideration which are listed below.

a. CARES-SF (Schag 1991) - 59 item scale which measures rehabilitation and quality of life in patients with cancer. This has been modified to the HIV Overview of Problems Evaluation Systems (HOPES, Schag 1992)

b. Chronic Respiratory Disease Questionnaire (Guyatt 1987) - a 20 item disease specific quality of life scale developed for measuring outcomes of clinical trials for patients with COPD.

c. City of Hope Quality of Life, Cancer Patient Version (Ferrell 1995) - a 41 item ordinal scale representing the four domains of quality of life including physical well being, psychological well being, and spiritual well being.

d. COOP Charts (Nelson 1996) – a series of charts that features drawings to quickly screen patients in an outpatient setting.

e. Daily Diary Card-QOL (Gower 1995) - a self-administered card for use in cancer clinical trials that has been shown to demonstrate short-term changes in quality of life related to symptoms induced by chemotherapy.

f. EORTC QOL-30 (Aaronson 1993) - this instrument is composed of modules to assess quality of life for specific cancers in clinical trials. The current instrument is 30 items with physical function, role function, cognitive function, emotional function, social function, symptoms, and financial impact.

g. EuroQol Quality of Life Scale (EuroQol 1990) - a measure that covers five dimensions—mobility, self-care, role (or main) activity, family and leisure activities, pain and mood—and expresses health status as a single index score.

h. FACT-G (Cella 1993) – a 33 item scale developed to measure quality of life in patients undergoing cancer treatment.

i. FAHI (Cella 1996) - a 20 item HIV specific subscale that is added to the FACT-G scale to assess quality of life in HIV-positive patients.

j. Ferrans and Powers Quality of Life Index (Ferrans 1985) - a two section, 68 question instrument that measures both satisfaction with, and importance of, multiple domains.

k. FLIC (Finkelstein 1988) – a 22 item instrument which measures quality of life in the following domains: physical/occupational function, psychological state, sociability, and somatic discomfort. This scale was originally proposed as an adjunct measure to cancer clinical trials.

l. Hospice Quality of Life Index--Revised (McMillian 1996) – a 28 item scale specifically developed to measure quality of life in hospice. Domains measured include physical, psychological, spiritual, social and financial well being.

m. McGill Quality of Life Questionnaire (Cohen 1995) – a 20 item scale specifically developed to measure quality of life at the end of life.

n. Medical Outcomes Study, Short Form Health Survey (Ware1990) – this 36 item scale is based on the health status measurement of Rand’s Health Insurance Experiment. The following domains are measures: physical functioning, role limitations, bodily pain, social functioning, mental health, vitality, and general health perceptions. The MOS SF 36 has been employed in persons with symptomatic HIV disease (Wachtel 1992).

p. Nottingham Health Profile (Hunt 1981) – a two section, 46 item scale that measures physical, social, and emotional health problems and their impact on functioning.

q. Painter (unpublished) - a single item asking about the number of “good days” in the last week of life.

r. Perceived Quality of Life Scale (Patrick 1992) - a 20-item questionnaire with questions about health status and satisfaction with functioning.

s. Quality of Life Index (Pedilla 1983) - a short, 14 item scale that measures general physical condition, important human activities, and general quality of life.

t. Quality of Life for Respiratory Illness Questionnaire (Maille 1997) - a 55-item disease- specific scale for patients with mild to moderate chronic non-specific lung disease.

u. Quality of Well-Being scale (Kaplan 1994) - this scale is unique in that it can summarize a patient’s quality of life into one number. The scale assesses mobility, physical activity, social activity, and 27 symptoms.

v. SELF Scale (Linn 1984) - 54 item scale originally developed to measure quality of life among persons age 60 and older.

w. Sickness Impact Profile (Bergner 1976) – a 136 item instrument which measures how an illness impacts on a persons behavior. A well established instrument that many have utilized as a reference standard in measuring quality of life.

x. Southwest Oncology Group Quality of Life Questionnaire (Moinpour 1990) - a scale developed for cancer patients incorporating questions from various function, symptoms, and global quality of life measures.

y. Spitzer QL-Index (Spitzer 1981) – this is one of the earliest QOL instruments that measures activity level, social support, and mental well being. The scale is intended to be completed by a health care professional and consists of only five items.

z. VITAS Quality of Life Index (Byock and Merrimen, 1995) - there are two versions of this quality of life index which assess symptoms, function, interpersonal domains, well being, and transcendence.

Aaronson NK, Ahmedzai S, Bergman B, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: A quality-of-life instrument for use in international clinical trials in oncology. J National Cancer Institute 1993;85:365-376.

Bergner M, Bobbitt RA, Pollard WE. Sickness Impact Profile: Validation of a health status measure. Med Care 1976;14:57-61.

Byock, IR. Missoula-VITAS Quality of Life Index: Version-25S. Missoula, MT: VITAS Healthcare Corporation, 1995.

Cella DF, Tolsky DS, Gray G, et al. The functional assessment of cancer therapy scale: development and validation of the general measure. J Clin Oncol 1993;11:570-579.

Cella DF, McCain NL, Peterman AH, et al. Development and validation of the functional assessment of human immunodeficiency virus infection (FAHI) quality of life instrument. Qual Life Res 1996;5:450-63.

Cohen SR, Mount BM, Strobel MG, et al. The McGill Quality of Life Questionnaire: A measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliative Med 1995;9:207-219.

Cohen SR, Mount BM, Bruera E, et al. Validity of the McGill Quality of Life Questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain. Palliative Med 1997;11:3-20.

Cohen SR, Hassan SA, Lapoint BJ, Mount BM. Quality of life in HIV disease as measured by the McGill Quality of Life Questionnaire. AIDS 1996;10:1421-7.

EuroQol Group. EuroQol: a new facility for the measurement of health-related quality of life. Health Policy 1990;16:199-208.

Ferrell BR, Hassey-Dow K, Grant M. Measurement of the QOL in cancer survivors. Quality of Life Research 1995;4:523-31.

Ferrans CE, Powers MJ. Quality of Life Index: Development and psychometric properties. Adv Nurs Sci 1985;8:15-24.

Finkelstein DM, Cassileth BR, Bonomi PD, et al. A pilot study of the functional living index-cancer (FLIC) scale for the assessment of quality of life for metastatic lung cancer patients. Am J Clin Oncol 1988;11:630-633.

Gower NH, Rudd RM, Ruiz de Elvira MC, et al. Assessment of ‘quality of life’ using a dialy diary card in a randomised trial of chemotherapy in small-cell lung cancer. Annals of Oncology 1995;6:575-80.

Greer DS, Mor V, Sherwood S, et al. National Hospice Study Final Report. Brown University: Providence, RI, 1984.

Guyatt GH, Berman LB, Townsend M, et al. A measure of quality of life for clinical trials in chronic lung disease. Thorax 1987;42:773-778.

Hunt S, McKenna SP, McEwen J, et. al. The Nottingham Health Profile: Subjective health status and medical consultations. Soc Sci Med 1981;15 A:221-229.

Linn MW, Linn BS. Self-evaluation of life function (SELF) scale: A short, comprehensive self-report of health for elderly adults. J Gerontol 1984;39:603-612.

Maille AR, Koning CJ, Zwiderman AH, et al. The development of the ‘Quality-of-life for Respiratory Illness Questionnaire (QOL-RIQ)’: a disease-specific quality of life questionnaire for patients with mild to moderate chronic non-specific lung disease. Respir Med 1997;91:297-309.

Moinpour CM, Hutchinson F, Hayden K, et al. Quality of life assessment in Southwest Oncology Group trials. Oncology-Huntington 1990;4:79-93.

Nelson EC, Wasson JH, Johnson DJ, et al. Dartmouth COOP functional health assessment charts: Brief measures for clinical practice. In: Spilker, B, ed. Quality of Life and Pharmacoeconomics in Clinical Trials. 2nd edition. Philadelphia: Lippincott-Raven Publishers, 1996.

Padilla GV, Presant C, Grant M et al. Quality of Life Index for patients with cancer. Research in Nursing and Health 1983;6:117-126.

Schag CA, Ganz PA, Heinrich RL. Cancer Rehabilitation Evaluation System-Short Form (CARES- SF): A cancer specific rehabilitation and quality of life instrument. Cancer 1991;6:1406-1413.

Spitzer WO, Dobson AJ, Hall J, et al. Measuring quality of life of cancer patients: A concise QL- Index for use by physicians. J Chron Dis 1981;34:585-597.

Stewart AL, Hays RD, Ware JE. The MOS short-form general health survey: Reliability and validity in a patient population. Med Care 1988;26:724-735.

Wachtel T, Piette J, Mor V, et al. Quality of life in persons with human immunodificiency virus infection: Measurement by the medical outcomes study instrument. Ann Intern Med 1992;116:129- 137.

This initial portion of this section was written by Joan Teno. Review of key instruments, recommendations for future research, as well as a new conceptual model of quality of life was done by Dr. Anita Stewart.

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Examining Advance Care Planning

QUALITY OF LIFE