What's important for quality of life to Indians - in relation to cancer
Fifty subjects were interviewed to determine the items or issues which they considered as reflecting quality of life and how important these items were in the event of a serious illness. Peace of mind, spiritual satisfaction and social satisfaction were considered to be very important by nearly all of the subjects. Individual.s functioning and level of physical and psychological health were given much less significance. Level of satisfaction was valued much higher than the level of functioning.
Keywords: quality of life, level of functioning, satisfaction, peacefulness, social satisfaction, terminal illness
The concept 'quality of life' is understood and interpreted differently by people and professionals. The emphasis of quality of life varies from feelings of well-being to physical, social, occupational and sexual functioning. It is generally agreed, however, that in the final analysis the determination of a person's quality of life is a matter for the individual alone to decide. Common use would support the definition of Jonsen et al. that "Quality of life refers to the subjective satisfaction expressed or experienced by an individual in his physical, mental and social situation". A good quality of life can be said to exist when the hopes of an individual are matched and fulfilled by experience. In order to maintain a good quality of life, the priorities and goals of an individual must be realistic. To improve quality of life it is necessary to narrow the gap between aspirations and what actually is possible.
Measures of quality of life (QOL) invariably focus on the ability of an individual to function in occupational, social, domestic spheres and his capacity to involve himself in activities of daily living and self care. Many of the current instruments[5-10] focus on physical aspects and measure ability to function and perhaps, should be referred to as instruments measuring quality of functioning and not 'quality of life'. However, certain scales as Linear Analogue self-Assessment (LASA), Cancer Inventory of Problem Situations (CIPS) and Hospital Anxiety and Depression Scales (HADS) stress the psychological part of QOL. Fowlie et al. in their recent article focussing on the benefits of asking the patient about their quality of life concluded that for a cancer patient "his quality of life is not determined so much by the extent of his symptoms, the quality of his support system, or his knowledge of or involvement in his disease or treatment, but rather by the extent to which he has come to terms with his condition and is at peace with himself". By definition quality of life is an individual's subjective sense of wellbeing and therefore is necessarily the result of personal perception of circumstances. The importance of respondent perceptions in assessing quality of life means that the scale must contain information from patients themselves, otherwise these scales may omit information of central importance. The content of the items should be perceived as meaningful and relevant by the respondent. This characteristic can be assessed by asking respondents which items tapped areas important to them or with which they would like help. Donovan et al. reviewed seventeen scales for assessing QOL in cancer patients and concluded that there were no reports of studies examining the perceived relevance of the items for any of those commonly used seventeen scales. Also, only two scales [17, 18] had items on spiritual domain.
The objectives of the present study were to determine the items or issues which individuals considered as reflecting their quality of life, and how important they considered these items or issues to be, especially in the event of a terminal illness.
This study was carried out at the Department of Psychiatry, National Institute of Mental Health and Neurosciences, Bangalore, India. The subjects were included from amongst relatives of patients, patients themselves and health professionals. The subjects were chosen by the method of random selection irrespective of their diseases, stage of disease or professional status. After seeking consent these were all interviewed by the author. Earlier, a list of items important in determining quality of life was prepared after talking to a few patients and professionals in an open ended interview. A list of 45 items and themes were identified from these interviews. Certain predetermined items were also included from two quality of life scales-the Functional living index-Cancer and Aaronson et al.'s Multidimensional approach to the measurement of quality of life. Based on the above interviews and the above scales a list of ten items based on thematic similarity and frequency was drawn out for assessment of the importance of these items as regards quality of life. These items [Table - 2] were:
In addition four key dimensions were identified, namely: marital, occupation, social and self care. These key dimensions had two aspects each-one of functioning and the other of satisfaction (irrespective of the functioning) in that dimension. These dimensions included:
Marital functioning: Performance of marital role or duties. Relationship with spouse, sexual relationship, looking after the family, bringing up children.
Marital life satisfaction: Degree of satisfaction with the above marital role.
Occupational functioning: Ability to go for a job, level of performance (efficiency) at job, (in order to earn a livelihood).
Occupational satisfaction: Degree of satisfaction with the above occupational functioning.
Social functioning: Attending social functions, e.g, marriages, meeting friends, relatives; hosting them. Interaction with others. Social roles, participating in social gatherings.
Social satisfaction: Degree of satisfaction with the performance of social roles.
Self care functioning: Looking after self, personal care and hygiene, clothing, grooming, feeding, toilet care etc.
Satisfaction with self: Satisfaction with the ability to look after self and self care activities.
The subjects were given a brief introduction of the purpose of the study. This was followed by inquiring about what issues or items/or dimensions the individuals considered were important while assessing quality of life. The subjects were asked to rate whether they considered each of the above item as very important, moderately important or not important, for quality of life assessments. For example, how much do you think is peacefulness of mind important for quality of life?' Or 'do you think religious activities are important for quality of life?' if so, how much? Similarly, respondents were asked to rate the importance of each dimension separately for level of functioning and level of satisfaction. For example, 'how important do you think the ability to perform social activities are, for quality of life?' 'how important is the satisfaction with social ties and functioning?'
Since the above assessments were conducted in the form of a semi-structured interview the importance was cross checked by a few questions (as illustrated above) to ascertain consistency of responses. The percentage frequency distributions of the importance of each item and dimension were determined.
There were 50 subjects interviewed for this study.
There were 18 patients (of different diagnosis, who had advanced disease with metastasis, [Table - 1]), 20 relatives and 12 professionals (doctors 3, nurses 5 and psychologists 4). The other demographic characteristics have been tabulated in [Table - 1]. The sample had males (52%) and females (48%); 58% had at least 10 years of education and 46% were economically well off. All the subjects were of Hindu religion. The individual's ratings on the importance of these dimensions in a rank order (for very important) is given in [Table - 2]. Items considered to be very important for quality of life were found to be: peace of mind (66%), spiritual satisfaction (62%), satisfaction with religious tasks (60%), and happiness with family, relations and social network (60%). The items frequently considered to be of less importance for quality of life assessment were the level of individual's functioning (58%), level of physical and psychological health (36% each). The subjects rated the importance of their functioning and satisfaction in four domains-marital, occupational, social and self care aspects of their lives, as shown in [Table - 3]. It was observed that less than 25% of the subjects considered as very important their level of functioning in job, self care, social and marital spheres. However, satisfaction in these domains was considered as very important by 64% (self satisfaction), 56% (satisfaction in social aspects), 48% (job, work satisfaction) and 42% (satisfaction in marital life).
Our findings are quite at variance from a number of studies wherein physical symptoms and functioning have been (over) emphasized. In these studies, summarised by van Krippenberg and de Hues, physical functioning has been one of the key measures of quality of life. Our findings have indicated that there are a number of other issues which are also important besides level of physical functioning. Our results are comparable with another recent study that peace of mind or peace with oneself is perhaps the most important issue for quality of life despite differences in samples and their cultural background.
The five most important items for QOL in [Table - 2] seem quite abstract and therefore are likely to pose a lot of difficulty in their measurement. Nevertheless, attempts should be made to incorporate these issues while assessing quality of life. Subjects in our study quite clearly have shifted the emphasis from physical functioning to spiritual ones. The existing scales on quality of life[5-10] in fact measure the quality of functioning. Our results indicate that the quality of life and quality of functioning are indeed quite different (especially in an Indian set up). Most items listed by the subjects can naturally be affected by cancer and its treatment. QOL measurements were first made for patients undergoing active chemotherapy because of the side effects of treatment and used as instruments to measure the effects of drastic treatment on life, may not meet the needs of patients with a terminal illness adequately.
At present, it is hard to say whether our findings are influenced markedly by the sociocultural factors, since all the subjects were Hindus. They seem to be definitely affected to a certain extent because family ties, social support and spiritual as well as religious activities are considered of immense importance in a Hindu family, especially at times of disease and death. There were no significant differences between age groups, sexes, occupational or professional backgrounds as regards the importance of the items mentioned. Our findings need to be confirmed in other groups of diseases and disease free subjects as well as in other cultural settings. The next tasks would be to find reliable, valid measures of such issues and also ways of improving quality of a life by methods which take into account these abstract themes.
The relatively small sample size is a limitation of the present study. It is also a heterogenous group, having patients with malignancies of breast, lung, lymph glands and other organs, with metastasis and advanced stages. It would have been interesting to compare results of patients' comments with those of relatives and professionals. This was not done because of relatively small numbers in each group. Discrepancies in ratings between patients and health professionals have been known to occur [9, 10]. Estimates of QOL given by health care providers must be interpreted with caution when QOL is regarded as a subjective evaluation.
In this study a distinction has been made between level of functioning and degree of satisfaction. The respondents differential rating on these and the emphasis on satisfaction (irrespective of functioning) is difficult to explain. It could be the perception of Indian subjects who are happy to be dependent on others, especially family members. It could also be because part of the sample interviewed had not experienced severe physical distress themselves.
Donovan et al. suggested that adequate quality of life measures should include assessment of the spiritual domain. There is evidence that as the physical condition deteriorates, spiritual issues commonly gain in importance as determinants of quality of life. While this aspect has been relatively less explored in QOL measures, it could add vital information for cancer patients and has been considered of great importance by 92% of our subjects. Given the questions about the meaning of life and death that cancer generates the spiritual domain also needs to be tapped. Findings of this study also suggest that different national and ethnic groups may define, evaluate and perceive quality of life differently. This could have been confirmed by administering other QOL instruments used in different ethnic groups, previously for comparison of data. This, however, was not conducted during this study.
Reprinted from Social Science and Medicine Vol.33, No.1, 1991 pp 91-94 with permission from Elsevier
Quality of life is an interesting subject. Most professionals understand what it implies, but disagree on what should be measured, how it should should be measured, and what it actually is. In the light of this, the above paper added just one more view point. In this post script the focus is on how the thinking has changed or otherwise regarding what is important for quality of life for cancer patients, fifteen years after this survey was conducted.
The above paper reported that the individual's satisfaction, spiritual and abstract aspects were considered most important. A number of scales have now included the spirtual dimension into quality of life scales, and some scales on assessment of the spiritual have been developed. Many studies on chronic and terminally ill persons also assess spiritual aspects.
With the inclusion of the spiritual aspect and its assessment, it became apparent that functional aspects and spiritual aspects are not entities on their own but are interrelated, e.g., a person with better functional status, and less suffering may have more peace of mind and satisfaction. Coversely, a person who is at peace, may not be troubed as much by impaired physical functioning, and be satisfied with his quality of life.
Looking from the perspective of Calman's gap, it is possible to vary the gap which denotes QOL The gap can be reduced by by interventions that reduce physical suffering and improve functioning, or by helping the person attain peace through spiritual, religious and psychological services.
[Table - 1], [Table - 2], [Table - 3]