Spirituality, religion, and health: a critical appraisal of the Larson reports.

The four-volume corpus The Faith Factor, and Scientific Research on Spirituality and Health: A Consensus Report by Larson et al constitute the largest English-language review of research on spirituality and health. We have done a critique of the 329 systematic analyses of peer-reviewed research papers presented therein. The objectives were to determine if the Larson conclusions can be generalized; to document the understanding of the potential of qualitative research in assessing the spiritual domain; and to examine whether the definitions of religion and spirituality used by Larson et al correspond to those in general use. We conclude that their results cannot be generalized to other religious and cultural settings; that there is a need for more research focusing on age groups, cultures, religions, and clinical settings not adequately represented in studies to date; and that the need for more qualitative research methods justifies a detailed analysis of the use of qualitative methods in the studies reviewed by the Larson group. Finally, there is a need to establish a common vocabulary that bridges cultural and religious traditions, and facilitates clinical care, research, and teaching relating to spirituality, religion, and health.

Changes in quality of life following admission to palliative care units.

The primary goal of palliative care is to improve the quality of life (QOL) of people with a terminal illness. Previous studies of the impact of hospice/palliative care have documented improvement in physical and psychological symptoms, but not in overall QOL, due in part to the difficulties of measuring QOL. The McGill Quality of Life Questionnaire (MQOL) was developed to assess QOL in persons with advanced illness. MQOL scores were determined on admission and 7-8 days later for sequential eligible and willing patients admitted to five palliative care units. These 88 patients represented 8% of those admitted to the units during the study period. Following the final MQOL completion, patients were interviewed and asked to describe the nature of the changes in QOL they had experienced since admission. Significant improvements were found in the MQOL total score and subscale scores reflecting physical, psychological and existential well-being. In the interviews patients indicated that they had experienced changes in physical, emotional and interpersonal status, in spiritual outlook, and in their preparation for death. They also described the impact of the palliative care unit environment. This is the first study to demonstrate that hospice/palliative care can improve existential well-being in addition to psychological and physical symptoms. It provides evidence in the patients' own words that improvements in QOL go beyond symptom control following admission to a palliative care unit. However, the study results are generalizable only to those few patients admitted who are well enough to complete a questionnaire 1 week after admission.

Living with cancer: "good" days and "bad" days--what produces them? Can the McGill quality of life questionnaire distinguish between them?

BACKGROUND: To determine the impact of care on quality of life (QOL), or to detect a change in QOL over time, measures of QOL must remain stable when QOL is stable (test-retest reliability) and change when QOL changes (responsiveness). This study addresses these issues for the McGill Quality of Life Questionnaire (MQOL). Unlike other studies that use disease status to indicate whether QOL has remained stable or changed, in this study the patient determines QOL stability or change. The authors also sought to clarify the determinants of "good" and "bad" days for oncology patients. METHODS: Patients attending an oncology outpatient clinic or who were being treated by a palliative care service were asked to complete MQOL 4 times: on days they judged to be "good," "average," and "bad" and 2 days after the first completion. They also were asked to directly rate the change in their QOL during the intervals between MQOL completion and to report the most important determinants of their good and bad days. RESULTS: The test-retest reliability of MQOL as measured by an intraclass correlation coefficient ranged from 0.69 to 0.78. All MQOL scores were significantly different on good, average, and bad days, except for the support subscale, in both clinical settings. Five domains were determinants of QOL: physical symptoms, physical functioning, psychologic well-being, existential well-being, and relationships. CONCLUSIONS: MQOL's reliability and responsiveness suggest it can be used to determine changes in the QOL of groups. The results allow interpretation of changes in MQOL scores with respect to meaning of the change to oncology patients. This in turn is helpful to determine the sample size required in future studies. Some of the domains important to the QOL of oncology patients are not included in widely used measures of QOL.

The need for specialized training programs in palliative medicine.

Canada faces a significant and growing burden of terminal illness. There are major unresolved economic, ethical and social issues related to care at the end of life. Despite the international reputation for Canadian efforts in palliative care, the medical profession in Canada has largely failed to recognize the importance of the field, as evidenced by the lack of commitment on the part of most medical faculties at Canadian universities to developing academic strength in palliative medicine, the lack of content in the undergraduate curriculum and of postgraduate programs in palliative medicine, and the lack of support for research into end-of-life care. The authors propose a conjoint initiative by the Royal College of Physicians and Surgeons of Canada and the College of Family Physicians of Canada to develop specialized training programs in palliative medicine as a critical step in addressing this crisis.

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.

This study was carried out in eight palliative care services in four Canadian cities. A revised version of The McGill Quality of Life Questionnaire (MQOL) is compared to a single-item scale measuring overall quality of life (SIS), and the self-administered version of the Spitzer Quality of Life Index (SA-QLI), to obtain evidence of validity. MQOL total score predicts SIS better than does SA-QLI, although much of the variance remains to be explained. The results of principal components analysis of data using this revised version of MQOL are similar to those from previous MQOL studies with different patient populations. The MQOL subscales, constructed on the basis of principal components analysis, demonstrate acceptable internal consistency reliability. The MQOL measures reflecting physical well-being and existential well-being are important for predicting SIS.

Well-being at the end of life: Part 1. A research agenda for psychosocial and spiritual aspects of care from the patient's perspective.

This article reviews the scientific literature concerning psychosocial and spiritual aspects of palliative care for the patient with cancer. It discusses 4 separate areas: the continuum of care, communication, spiritual and psychological issues, and psychotherapeutic and behavioural management of physical symptoms. Most of the research could be classified as fundamental according to the Cancer Control Framework of the National Cancer Institute of Canada. In some areas, even fundamental research was lacking. There is a need for clearer and more relevant definitions of the desired outcomes of interventions and also for the development of appropriate quantitative and qualitative methods. We must determine which interventions can be initiated earlier in the disease trajectory and can provide benefit at the palliative phase. Given the burden of suffering that palliative care aims to address, relatively little research in this area has been conducted.

Well-being at the end of life: Part 2. A research agenda for the delivery of care from the patient's perspective.

This article reviews the scientific literature in several areas important to the delivery of palliative care: multicultural issues, education, comprehensive outcome measures and ethics. Most of the research can be classified as fundamental rather than intervention research according to the Cancer Control Framework of the National Cancer Institute of Canada. Desired outcomes of interventions are most often defined from the health care professional's perspective but need to be defined from the patient's perspective. In areas such as multicultural issues and the effect of the volunteer on the patient, there is almost no research. The complexity of studying the best way to deliver palliative care would benefit from the input of colleagues who have experience addressing these issues in other patient populations.

Quality of life in HIV disease as measured by the McGill quality of life questionnaire.

OBJECTIVE: To test the acceptability, validity, and internal consistency reliability of the McGill quality of life questionnaire (MQOL) for persons living with HIV/AIDS. DESIGN: The validity of MQOL was tested by having HIV-seropositive outpatients complete the 16-item MQOL, a single-item scale (SIS) measuring overall quality of life (QOL), and a physical symptom questionnaire. METHODS: Factor analysis was used as a guide for construction of MQOL subscales. Validity was studied by determining the correlation between MQOL and SIS, and between MQOL physical measures, CD4 counts and the physical symptoms questionnaire. Multiple regression was employed to determine how best to combine MQOL subscales to predict SIS. RESULTS: MQOL was acceptable to this patient population. Factor analysis suggests that MQOL can be represented by live measures: a single item measuring physical well-being and four subscales representing physical symptoms, psychological symptoms, existential well-being, and support. Multiple regression analyses suggest that the existential domain contributes greatly to QOL for people with advanced HIV disease (CD4 counts < 100 x 10(6)/l). CONCLUSION: MQOL is an acceptable and valid measure of QOL for people living with HIV/AIDS, with meaningful and reliable subscales as well as a summary score. The inclusion of a measure of existential well-being in MQOL may make it a more valid measure of QOL, especially for people with advanced disease, than QOL instruments which do not include this domain.

Existential well-being is an important determinant of quality of life. Evidence from the McGill Quality of Life Questionnaire.

BACKGROUND: The McGill Quality of Life Questionnaire (MQOL) is being developed to correct what we perceive to be a flaw in existing quality of life instruments: neglect of the existential domain. METHODS: This study reports the first use of MQOL for people with cancer at all phases of the disease, including those with no evidence of disease after therapy. RESULTS: The data suggest that MQOL is comprised of an item measuring physical well-being and four subscales: physical symptoms, psychological symptoms, existential well-being, and support. MQOL is acceptable to oncology outpatients. Correlation of the MQOL total and subscale scores with a single item scale measuring overall quality of life and with the Spitzer Quality of Life Index suggests that MQOL has construct and concurrent validity. CONCLUSIONS: The hypothesis that the existential domain is important, especially to those patients with a life-threatening illness, is supported because multiple regression showed that the existential subscale is at least as important as any other subscale in predicting a single item scale measuring the overall quality of life and plays a greater role in determining the quality of life of patients with local or metastatic disease than in patients with no evidence of disease.

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.

This is the first report on the McGill Quality of Life Questionnaire (MQOL), a questionnaire relevant to all phases of the disease trajectory for people with a life-threatening illness. This questionnaire differs from most others in three ways: the existential domain is measured; the physical domain is important but not predominant; positive contributions to quality of life are measured. This study was conducted in a palliative care setting. Principal components analysis suggests four subscales: physical symptoms, psychological symptoms, outlook on life, and meaningful existence. Construct validity of the subscales is demonstrated through the pattern of correlations with the items from the Spitzer Quality of Life Index. The importance of measuring the existential domain is highlighted by the finding that, of all the MQOL subscales and Spitzer items, only the meaningful existence subscale correlated significantly with a single item scale rating overall quality of life.

Phototherapy in the treatment of depression in the terminally ill.

Research in affective disorders has shown that there is a clear link between mood and light exposure, and that exposure to bright wide-spectrum light (phototherapy) may be an effective antidepressant treatment in some clinical situations. Cancer patients, especially those in the terminal phase of illness, have a high incidence of depression. Furthermore, their mobility is often severely reduced, resulting in little exposure to direct sunlight. We report the use of phototherapy in three terminally ill patients to alleviate symptoms of depression.