A Commentary: Cross-Cultural Quality-of-Life Assessment at the End of Life

Transcription

1 The Gerontologist Vol. 42, Special Issue III, Copyright 2002 by The Gerontological Society of America A Commentary: Cross-Cultural Quality-of-Life Assessment at the End of Life Shekhar Saxena, MD, DAB, MRC, Psych, 1 Kathryn O Connell, MA, MSc, 1 and Lynn Underwood, PhD 2 The work reported herein has been conducted by WHO in collaboration with The WHOQOL Group, The WHOQOL-HIV Group, and The WHOQOL-SPRB Group. Names of group members are available from WHO. The assistance of Mark Van Ommeren in revising this paper is gratefully acknowledged. Address correspondence to Shekhar Saxena, MD, DAB, MRC, Psych, Department of Mental Health and Substance Dependence, World Health Organization, CH-1211 Geneva, Switzerland. saxenas@who.ch 1Department of Mental Health and Substance Dependence, World Health Organization, Geneva, Switzerland. 2Fetzer Institute, Kalamazoo MI. This commentary explores the cross-cultural aspects of quality-of-life assessment at end of life. Such assessment will have important implications in terms of patient satisfaction and the way care is given and received. In particular, little work has focused on cross-cultural aspects at end of life. This paper focuses on the World Health Organization (WHO) Quality of Life (WHOQOL) instrument for assessment of quality of life at end of life. The generic WHOQOL-100 as well as its 26-item short version, the WHOQOL-Bref, are multidimensional instruments developed for cross-cultural use. Both instruments assess 24 facets (conceptual aspects) of quality of life, subsumed within 6 domains [physical; psychological; level of independence; social; environmental; and spirituality, religiousness, and personal beliefs (SRPBs)]. This paper focuses on the further development of the domain of SRPB with respect to work done toward developing two new WHOQOL modules: a module for the assessment of quality of life in persons who are living with HIV/AIDS and a specific module on assessing spiritual, religious and personal beliefs. Both modules contribute to the assessment of quality of life at end of life in national and international settings. The importance of assessment of quality of life has gained considerable value in recent years. When the WHO defined health as A state of complete physical, mental and social well being not merely the absence of disease or infirmity, it implied that the assessment of health and health care should not only include traditional measures of morbidity and mortality, but should also include broader assessment of quality of life. The WHO has defined this concept as an individual s perception of their position in life, in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns (WHOQOL Group, 1993, 1995). Although research has generally focused on specific areas and populations such as chronic pain patients (Skevington, 1998), elderly individuals, persons living with HIV/AIDS, and cancer patients little work has focused specifically on persons at end of life. Whereas the quality of life of persons at end of life is clearly influenced by psychological, social, physical, and environmental factors in the same way that other populations are influenced, there are additional features of importance. Persons who are at end of life will have specific needs and expectations. In addition, it is important to distinguish that whereas end of life is a particularly relevant phenomenon among the elderly (Samuel, Rajkumar, & Prabhu, 1992; Stewart, Sherbourne, & Brod, 1996), it is also clear that it is not a factor constrained to this group. Quality of life at end of life extends to all persons suffering from terminal illnesses thus afflicting all ages and impacting as a consequence of many diseases. Instruments such as the SF-36 that are designed to measure health-related quality of life focus on a functional assessment approach, which is not the whole picture for end-of-life research outcomes. An additional question often arises in particular clinical circumstances, Is life worth living? To answer this question, we have to look at many aspects of a person s life, including social, psychological, and meaning-of-life questions. A subjective approach is needed to weigh the importance of various features for a particular individual. Cross-cultural Aspects of Quality of Life at End of Life When focusing on the multidimensional nature of quality of life, and how quality of life is affected at end of life, the profound influence of culture and social factors is apparent. A person s perceived satisfaction at end of life is greatly influenced by many variables, such as gender, race, ethnicity, socioeconomic status, and education. Research has shown that determination of illness and response to illness vary with culture. For example, it has been shown that some 81

2 conditions, within different cultures, have been more highly marked in terms of stigma and fear, for example, cancer in Japan and chronic fatigue syndrome in the United States (Payer, 1988; Sontag, 1978). Among cancer patients, there is overwhelming clinical evidence that race, ethnicity, and other cultural factors have a substantial influence on the subjective impact of physical and psychological symptoms and on treatment decisions (Delbar 1999; Juarez, Ferrell, & Borneman, 1999). In the same way, early studies have found that a person s perception of pain and the amount of pain reported have large cultural connotations (e.g., Sternback & Tursky, 1965; Zborowski, 1952). Likewise, perceptions of death and the emotional responses from loved ones will also vary with culture, based on issues related to religion, gender, and ethnicity. Cultural factors are an integral part of the way patients cope with disease and treatment, and this is reflected in patients attitudes toward illness and health practices. The type of care that is given at end of life and the expectations of the person receiving the care will also depend on this and the values that person holds, and these values are mediated by cultural and social influences. Individuals from differing cultural backgrounds, undergoing the same type of care with similar diagnoses, may experience quite different levels of satisfaction as a result. This is because perceptions of illness can vary considerably. It is thus established that social and cultural factors play an important role in people s perceptions and expectations of how they see their health and quality of life. Gender, race, ethnicity, and religion will all impact on the perceived satisfaction of care, quality of death, and quality of life at end of life. The important point to take from here is that these factors must be examined simultaneously when assessing their impact on quality of life at end of life and quality of death. Measurement must be culturally appropriate and sensitive enough to detect changes, because this will have impact on the way care is given and received. Some of our own work conducted at WHO toward developing different versions of the WHOQOL may provide further insight into these cultural and social diversities. This commentary attempts to address quality of life at end of life from an international perspective. It gives an outline of the development of the WHOQOL-100 and WHOQOL-Bref. After this, ongoing work on two additional WHOQOL modules will be described. The first module is the development of a WHOQOL module for assessment in persons living with HIV/AIDS. This provides an example of how quality of life assessment in end of life may extend beyond elderly populations. The second module is the development of a specific module assessing spiritual, religious, and personal beliefs that will have particular relevance to all populations at end of life. The WHOQOL-100 and the WHOQOL-Bref The WHOQOL-100 is a subjective, cross-cultural measure that assesses respondents perception and subjective evaluation of various aspects of their lives. It was developed through a cross-cultural multicenter project involving a standardized protocol (WHOQOL Group, 1993). It was designed using a novel methodology, whereby it was developed simultaneously in a wide range of languages and across 15 cultural centers [Australia, Croatia, France, India (Madras and New Delhi), Israel, Japan, the Netherlands, Panama, Russia, Spain, Thailand, United Kingdom, United States, and Zimbabwe]. The simultaneous development is an enormous strength, because developing an instrument in one culture and translating it for another culture tends to weaken the validity of measures. The development of the WHOQOL-100 may be summarized as follows (WHOQOL Group, 1993, 1995, 1998b): An expert group meeting was first conducted to generate (a) facets, i.e., aspects contributing to quality of life (e.g., absence of pain, mobility, social support); and (b) domains, i.e., dimensions of quality of life (e.g., physical, social, spiritual quality of life). These facets and domains were then reviewed by focus groups in the 15 international centers. Participants in the focus groups included health care professionals and well and unwell individuals from respective populations. The aim of the focus groups was to test the face validity and comprehensiveness of the proposed WHOQOL domains and facets (Table 1). An item pool was generated by the participants. In addition, the groups rated the relative importance of the facets. Twenty-nine facets were confirmed as important to quality of life. Descriptions of these facets were Table 1. The Genetic WHOQOL-100 Version: Domains and Facets Domain 1: Physical Pain and discomfort Energy and fatigue Sleep and rest Domain 2: Psychological Positive feelings Cognitions Self-esteem Body image and appearance Negative feelings Domain 3: Level of Independence Mobility Activities of daily living Dependence medication Working capacity Domain 4: Social Personal relationships Social support Sexual activity Domain 5: Environment Safety and security Home environment Financial resources Health and social care Information and skills Recreation/leisure Transport Domain 6: Spirituality, Religiousness, and Personal Beliefs (SRPBs) SRPB General 82 The Gerontologist

3 then translated into the languages of the field centers after a standardized WHOQOL translation method (Sartorius & Kuyken, 1994). To test the psychometric properties of the 236 proposed items covering 6 domains and 29 facets of quality of life, a pilot study was conducted on 4,834 persons in the 15 centers. Item analysis of the pilot data led to a 100-item instrument covering 24 facets of quality of life, organized in six domains (physical; psychological; level of independence; social; environmental; and SRPBs; WHOQOL Group, 1998b). Each facet of quality of life contained four items arranged around a variety of 5-point Likert response scales: (a) intensity (not at all completely), (b) capacity (not at all completely), (c) frequency (never always), and (d) evaluation (very dissatisfied very satisfied). In addition, the WHOQOL contains 4 general items. The WHOQOL-Bref, a short form of the WHOQOL- 100, was developed at a later stage (Saxena, Carlson, Billington, & Orley, 2001; WHOQOL Group, 1998a). The short form contains 26 items, with one item representing each facet and two general items. The WHOQOL-Bref was developed on the basis of data from the aforementioned 15 sites, as well as data from Hong Kong, Germany (Leipzig and Mannheim), Argentina, and Brazil. Both measures are now available in more than 40 languages. Examples of some of the items are: How much confidence do you have in yourself? (not at all an extreme amount), Do you have enough energy for everyday life? (not at all completely), Do you generally feel content? (never always). Analyses conducted on an existing database containing WHOQOL-Bref data (N 11,830) from 23 culturally diverse centers revealed that on 18 of 24 facets, persons over the age of 65 reported significantly poorer quality of life (with the exception of financial resources, health and social care, and home environment). The largest differences were found for dependence on medication (F 253.4, p.001), mobility (F 244.4, p.001), and pain and discomfort (F 141.4, p.001). Additional analyses conducted only among persons over age 65 showed significantly poorer quality of life for all facets among those with lower education, with the exception of health and social care and self-esteem. Furthermore, women over 65 reported significantly poorer quality of life than men over 65 for all of the facets, except for physical environment, sexual activity, social support, and home environment. Largest effects were found for negative feelings (F 30.5, p.001), leisure (F 23.5, p.001), and mobility (F 20.1, p.001). These findings suggest the impact of gender, education, and age on the perception of quality of life in a multinational sample of elderly persons. While this sample does not focus on persons at end of life, the findings that older persons in general have poorer quality of life is an important indication of the importance of this area. The finding that, among persons over age 65, women and those with less education have poorer quality of life, suggests that certain groups may need special attention. Two WHOQOL Modules Relevant to End of Life A WHOQOL module is an independent questionnaire that may be added to the generic WHOQOL- 100 or WHOQOL-Bref to assess specific facets of quality of life. We will briefly describe ongoing work on two specific modules: the WHOQOL HIV/AIDS module and the SRPB module. Both modules may have particular relevance for persons at end of life. Although the exact relationships between spiritual beliefs, health, and quality of life are still open for investigation, there is evidence that these beliefs may be important, particularly in terms of how satisfied people are with the quality of their life at end of life. In particular, religious or spiritual beliefs are shown to be important psychosocial predictors of mortality. For example, Zuckerman, Kasl, and Ostfeld (1984) found in a longitudinal study of 400 elderly persons that religiousness reduced the risk of mortality among elderly persons who were in poor health. The WHOQOL-HIV/AIDS Module The work organized by WHO on persons living with HIV/AIDS has shown the importance of SRPB in persons dealing with terminal illness. Whereas the WHOQOL-100 and WHOQOL-Bref contain one facet asking about SRPB, this facet was quite general and did not fully explore the multidimensional nature of spirituality. A project to further develop a WHOQOL module for persons with HIV/AIDS reinforced the importance of SRPB to the quality of life of those who were likely to die early as a result of AIDS. In circumstances of chronic deterioration and imminent death, questions regarding the meaning and value of life, the plausibility of afterlife, justice and attribution of blame for disablement, and concerns about the future welfare of dependants take on special significance. Satisfaction with the answers to these questions may not only influence the course of infection and the rate of physical and mental deterioration, but also the quality of dying and the quality of life at death (World Health Organization, 1997). The methodology used to develop the HIV/AIDS module replicated the methodology used to develop the WHOQOL-100. Expert groups and international focus groups were organized in seven sites [Australia, Brazil, Thailand, India (New Delhi and Bangalore) Zambia, and Zimbabwe] to review the generic WHOQOL-100. Besides ratifying the generic facets as relevant, these groups suggested a range of additional facets, including (a) specific issues related to living with HIV (e.g., symptoms, sexual activities, disclosing having HIV); and (b) issues related to meaning and purpose in life, death and dying, spiritual connection, personal spiritual experience, and forgiveness. Focus group members (comprising 74% people with HIV/AIDS) wrote items to assess these facets in subsequent pilot testing (WHOQOL HIV group, in press). Subsequently, 15 additional, HIV/AIDS facets, encompassing 115 items, were pilot-tested along with the WHOQOL-100 among 900 persons from six 83

4 culturally diverse centers [Australia, Brazil, Thailand, India (New Delhi and Bangalore), and Zimbabwe]. Item analyses led to a 33-item HIV/AIDS module covering 12 facets, including facets on symptoms, body image, social inclusion, forgiveness, spirituality, and death and dying. Subsequently, this module was further field-tested, and data are presently being analyzed. Statistical analyses show that persons with HIV/AIDS showed poorer quality of life in terms of the identified spiritual facet than those who are HIV asymptomatic, indicating that this area may require particular attention at end of life. The description of the facet on death and dying reads as follows, This facet was proposed to examine feelings about death and dying, concerning oneself and others. It explores the process of bereavement, as grieving about the death of loved ones and friends (e.g., whether the person feels resolved about or can t get over these deaths). It also deals with a person s feelings about his or her own death (e.g., whether this is feared, accepted, viewed as inevitable or denied). This facet may include feelings about how death may happen, such as feeling prepared for death, and whether concrete plans have been made, as in how and where to die. Fears about death are distinguished from fears about the process of dying. What seems to make the critical difference is the quality of dying (e.g., whether one can imagine or anticipate being ready, in control, aware, surrounded by loved ones, comfortable, and not in pain). Other important aspects to assess in this facet include belief in life after death; presence of a conspiracy of silence among those closest to the person; and the personal or cultural significance of dying and/or being buried/ cremated in a special place or with one s predeceased family. The four items assessing death and dying are: (a) How much do you worry about death? ; (b) How bothered are you by the thought of not being able to die the way you would want to? ; (c) How concerned are you about how and where you will die? ; and (d) How preoccupied are you about suffering before dying? The WHOQOL SRPB Module The work on the WHOQOL HIV/AIDS module led to the decision to develop a specific module on SRPBs. The development of the SRPB module was independent of the WHOQOL HIV/AIDS module. This project may have obvious relevance to some of the conceptual and measurement issues associated with quality of life at end of life. The aim of this work was to develop a module that would tap into the spiritual, religious, and personal beliefs of persons across a variety of cultures, holding different world views. It was important to ensure that the module would be applicable to persons who hold religious beliefs and to those who do not. Once again, the methodology that had been used to develop the WHOQOL-100 was used to design this module. An expert meeting generated concepts of SRPB. The expert group comprised experts in the field of health and religion and psychology, who were also representative of the major beliefs worldwide. Experts were asked to think of ways in which their beliefs affect their quality of life. Brainstorming and conceptual mapping of these ideas followed, and small working groups were formed to write definitions and sample items. A total of 18 SRPB facets were generated for the focus groups to review. These can be found in Table 2. After the expert meeting, a series of 92 focus groups were run with 701 participants across 15 culturally diverse centers [Australia, Argentina, Brazil, China, Egypt, Lithuania, India (Bangalore and Pondicherry), Israel, Japan, Malaysia, Spain, Thailand, United Kingdom, and Uruguay]. These groups confirmed 15 SRPB facets and generated a total of 537 items. The items were then selected using the WHOQOL criteria (WHOQOL Group, 1993, 1995) and ranked by centers, so that seven items were piloted with each facet. These 15 facets were: inner peace, awe, love, spiritual strength, kindness to others, code to live by, faith, hope and optimism, spiritual connection, meaning and purpose in life, wholeness and integration, acceptance of others, forgiveness, death and dying, and a miscellaneous facet (which covered items on control over one s life, detachment/attachment, and freedom to practice beliefs and rituals). The expert groups and focus groups generated items for the pilot and provided definitions for the facets. The importance of each of these facets was also rated and confirmed by persons in the focus groups. Pilot testing was done in 18 sites: Argentina, Uruguay, Brazil (Porto Alegre and Santa Maria), Egypt, Kenya, Turkey, Lithuania, United Kingdom, Italy, Spain, Israel, India (Pondicherry and New Delhi), Malaysia, Thailand, Japan, and China. The results of the pilot testing are being finalized. However, initial results show that eight facets have good psychometric properties. These are spiritual connection, meaning of Table 2. The WHOQOL-100 SRPB Pilot Test Module; Additional Facet Facet Names Kindness to others and selflessness Acceptance of others Forgiveness Code to live by Freedom to practice beliefs and ritual Faith Hope and optimism Awe Inner strength Control over life Inner peace Meaning of life Connectedness to a spiritual being Wholeness and integration Detachment and attachment Death and dying Divine love Specific religious beliefs Note: SRPB spirituality, religiousness, and personal belief. 84 The Gerontologist

5 life, awe, wholeness and integration, spiritual strength, inner peace, hope/optimism, and faith. Alphas ranged between for each facet, and were.87 for the module. Exploratory factor analysis revealed that the additional SRPB facets are, while related to quality of life, unique from the WHOQOL-100 facets. This implies that the SRPB module measures a unique concept of quality of life. The SPRB module provides evidence of the importance of many of these aspects for people s quality of life and may have particular relevance to the quality of life at end of life. An example of a facet definition is as follows: The facet inner peace/serenity explores the extent to which people are at peace with themselves. The source of this peace is from within the person and can be connected to a relationship the person might have with God or it may derive from their belief in a moral code or set of beliefs. The feeling is of serenity and calmness. Whenever things go wrong, this inner peace helps you cope. It is viewed as a highly desirable condition. Items to assess this facet include: To what extent do you feel peaceful within yourself?, To what extent do you have an inner peace?, How much are you are able to feel peaceful when you need to?, and To what extent do you feel a sense of harmony in your life? Conclusions Social and cultural factors need to be taken into account during the measurement of quality of life at end of life. Cross-cultural applicability of instruments is a major limitation for their widespread use. The WHOQOL is the only quality-of-life instrument that has been simultaneously developed in a wide range of cultures. It is a cross-cultural measure that may be particularly useful for measurement of quality of life across different areas. In particular, the development of two modules one for persons with HIV/AIDS and one focusing on spirituality, religiousness, and personal beliefs may have particular usefulness for assessment of quality of life at end of life. The nature of the items reflects the needs of persons living with a life-threatening illness. The process followed in developing WHOQOL, as well as the domains, facets, and items, may be good starting points for a closer look at assessing quality of life at end of life. References Delbar, V. (1999). From the desert: Transcultural aspects of cancer nursing care in Israel. Cancer Nursing, 22, Juarez, G., Ferrell, B., & Borneman, T. (1999). Cultural considerations in education for cancer pain management. Journal of Cancer Education, 14, Payer, L. (1988). Medicine and culture: Varieties of treatment in the United States, England, West Germany, and France. New York: Henry Holt. Samuel, R., Rajkumar, S., & Prabhu, R. (1992). Quality of life of the elderly. In S. 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