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Quality of life assessment in palliative care
Annals of Oncology S: 13-18, 1994. © 1994 Kluwer Academic Publishers. Printed in the Netherlands.
Special article Quality of life assessment in palliative care I. G. Finlay1 & R. Dunlop2 1
Holme Tower Marie Curie Centre, Penarth; 2St. Christopher's Hospice, Sydenham, London, U.K.
Summary Palliative care aims to improve the quality of life of patients through attention to physical, psychological, social and spiritual distress. Assessment of quality of life, expressed as a global score, is difficult because patients are too ill for long interviews, but relatives and professionals are poor proxy respondents for patients. Quality of life assessment tools must be multidimensional, considering both physical and psycho-
What is palliative care
social issues, must be quick and easy to administer and score and must be sufficiently sensitive to detect changes with time. Quality of life assessment has audit and routine clinical uses; it is an essential consideration in any research involving the patient with advanced cancer. The different types of questionnaire assessment tool are discussed in detail. Key words: cancer, hospice, palliative care, quality of life, questionnaire, trials
Defining quality of life
'Palliative' derives from the Latin word 'pallium' which An awareness that some active treatments carry a huge means 'cloak'. The word was adopted into the modern burden led to the first attempts to assess scientifically hospice movement because it characterised the use of the risks and burdens of treatment against the benefits. For all palliative treatments, the benefits must always symptomatic treatments that did not alter the underlying disease process, usually cancer, and the fatal out- outweigh their risks and burdens; good days or weeks come. The principles guiding these treatments were must not be undermined by futile attempts to cure. developed in hospice inpatient units. The attention to Quality of life measures are essential to evaluate such the physical, psychological, social, and spiritual needs treatments since survival as an outcome measure is of terminally ill patients and their families became meaningless [2-5]. Increasing discussion of quality of life issues in both known as 'hospice care' or 'terminal care'. In the oncology setting, 'palliative' often has a differ- lay and medical press had led to pressure for 'quality of ent meaning and describes the use of anti-cancer treat- life' to always be considered in clinical decision making. However, quality of life is a term used as if it is an ments such as surgery, radiotherapy, and hormone or chemotherapy for patients who cannot be cured. These absolute that can be measured but no 'gold standard' treatments are used to relieve symptoms by reducing method of assessment exists that is universally acceptable, universally applicable and universally reliable [6]. tumour burden and may sometimes prolong life. Many patients are in the palliative or terminal phase There appears to be no agreed definition of the term of their illness at diagnosis. Palliative care has a major 'quality of life' [7]. Dupuis [8] suggested that impaired contribution to make early in the course of such can- quality of life represents the deficit between a person's cers and attempts to define a point at which a patient desired and actual levels of wellbeing. Most authors rebecomes terminally ill have persistently failed. The cognise that a satisfactory quality of life is an individual model represented by Stjernsward (Fig. 1) [lj suggests judgement [3, 9,10] and good quality as defined by one an interplay between treatments which may have a person may differ dramatically from good quality as curative or life prolonging effect (cytostatic and cyto- defined by another [11, 12]. A patient's report of their toxic treatments including surgery) and those aimed at controlling physical and psychosocial symptoms. Time For the purpose of this review, 'palliative care' refers to the application of the principles and strategies of Cancer pain relief and Bereavement care hospice care to patients with incurable cancer wherever palliative care they might be: hospice, home, or other setting such as Death an acute hospital. Palliative care can include the use of Diagnosis anti-cancer treatments with palliative intent. Fig. I.
14 quality of life often differs from that of the relatives or professionals, who are therefore poor proxy-respondents [13,14]. It is often assumed that hospice patients do not wish active intervention. However, even in a hospice setting [15] patients with cancer are much more likely that people who do not have cancer to opt for radical treatment in an attempt to relieve symptoms even when the chance of response is low [16]. Most authors also recognise that quality of life comprises many different facets [17—19]. Grant et al. [20] identified five major domains of quality of life: physical well-being, psychological well-being, social and interpersonal well-being, financial and material well-being, and sequels of diseases and treatment. Maguire and Selby [21] considered symptoms due to cancer, adverse effects of treatments, physical functioning, social interaction, psychological adjustment, sexual functioning and body image as constituent elements of quality of life which should be measured in clinical trials of active treatments. Their review of available instruments is recommended. General considerations about measuring quality of life Quality of life instruments must be short so as not to burden the patient, should take no more than 15 minutes to collect and score, and must be immediately acceptable and understandable to all the clinical members of the research team [6]. Lengthy interviews may be distressing and traumatic, particularly where time is short and a sick patient is aware of impending death [22]. Long interviews cannot be used routinely to re-assess a patient's clinical progress; compliance may be poor in studies if the quality of life measurement involves repeating a tiring interview [23]. The way questions are presented can dramatically influence the results obtained [24]. Linear analogue scales have been found to be satisfactory, particularly in pain measurement, but some patients find the concept difficult and want to score outside the fixed end as their condition worsens [25, 26]. Questions focussed on a single area may fail to assess the impact of disease on the patient's whole life, but conversely, a comprehensive enquiry may inadequately assess an important symptom despite being lengthy and time consuming. Self assessment avoids an interviewer bias and requires fewer resources but an interviewer may uncover important additional information [27]. The questionnaire should focus from one to seven days preceding the assessment and should avoid major treatment interventions [27]. Questionnaire design Emotional distress occurs independently of physical distress although both may interreact in the total suffer-
ing a patient experiences [28]. Patients with overwhelming symptoms may present distorted quality of life data since the intensity of distress caused by the symptom may mask or interfere with the reporting of other areas of distress through loss of cognitive clarity or inability to undertake an interview or questionnaire [14]. Thus the measure used must be sufficiently sensitive to detect several changes of clinical significance rather than the global distress score. Recently, patientled assessments have been developed for use in routine practice [15]. Difficulties in measuring the quality of life of terminally ill patients When cancer patients reach the last weeks of life, they experience an increasingly rapid decline both physically and mentally. Mor [29] found that the average number of physical symptoms increased and over half of the patients were moribund or very sick in the last week of their life. Only one-third of patients were able to answer questions about the severity of pain in the final week. The group of patients who could not respond had more symptoms. The average length of stay on hospice programmes is usually only days to weeks so it can be very difficult to obtain meaningful quality of life data from these patients. Mor [29] suggested a model for deciding what aspects of hospice patients' quality of life should be measured. Performance status and cognitive functioning are most profoundly affected and characterise the patients' decline [30, 31]. These aspects can be assessed by a family member in contact with the patient for long periods. Pain and symptom control are the next important element which can be relatively easily assessed. Only when good symptom control has been achieved can meaningful improvement in psychosocial aspects be attempted. Psychosocial measures have to be short as well as specific, avoiding any reliance on physical symptoms as indicators of mood disturbance for example.
Why measure quality of life Quality of life can be used to demonstrate the responses of patients to specific cancers |32], to examine symptom relief, to compare treatment responses, or to demonstrate the effects of specific rehabilitative approaches to cancer patients. This data can then assist planning and evaluating care [20]. In controlled clinical trials, direct measurement of quality of life is an important outcome measure [21]. It may be possible to recommend a treatment because it produces the best quality of life even if no survival advantage is demonstrated [21]. When one treatment produces satisfactory quality of life but unsatisfactory survival or vice versa [26] specific additional questions
15
about the disease or treatment may need to be asked before difficult value judgements are made [21]. When comparing studies the quality of life instrument must be relevant to both study populations [33]. When comparing places and systems of care, erroneous conclusions may be drawn from comparisons if the quality of life index used cannot detect these important differences [26] such as interaction with loved ones, comfort and familiarity, personal care and overall sense of personhood [34]. These may not be detected by a sample. In routine clinical practice an analysis of the patient's suffering and hence their quality of life can help guide clinical care [28]. Quality of life data is being used to make utility judgements for health resource allocation [35, 36]. Quality of Life Adjusted Years [37] (QUALY) is an important concept, but has not been validated against the judgements of real patients and real predicaments and is open to misapplication and abuse. Amongst those with disabilities the term 'QUALY' is feared as it places a financial value on life to potentially determine whether that life is or is not worth 'saving' with medical intervention. The Oregon Health Plan has demonstated that lay persons' judgements about the quality of life utilities of various disease outcomes can be combined with cost-effectiveness data to produce a more equitable approach to rationing of health care [38]. Community judgements emphasised the importance of funding comfort care and pain relief for terminally ill patients, regardless of diagnosis, which resulted in this category of care being ranked very highly in the Oregon Plan.
Memorial Pain Assessment Card (MPAC) has been validated for hospitalised cancer patients [51]. Psychosocial measures Some scores such as the general health questionnaire [52] and the hospital anxiety depression scale [53] were developed for non-cancer populations. The latter can be particularly useful in cancer patients, since it separates out the emotional components of depression and anxiety from the somatic manifestations which often resemble the physical disturbances caused by cancer. It is easy to administer and score and has superseded the Symptom Check List - 90 [54]. A shortened 14 item version of the Profile of Mood States (POMS), designed to assess mood states and changes in mood, has been developed for cancer patients [55]. The inventory of current concerns is a larger scale measuring potential sources of distress for people with serious illness [56]. McDowell and Newell [57] have reviewed the general measures of social and health interaction which are available, although Willey and Silliman [58] have since published a short three-item social activity scale.
Multidimensional assessments
The longer questionnaires such as the Cancer Inventory of Problem Situations (CIPS) [59] comprehensively cover both physical and psychosocial issues, but are too time consuming for ill patients to complete [29]. Assessing physical problems A questionnaire designed specifically to assess suffering in terminal illness was developed by McAdam (a) Functional status and Smith [28] to assist in the clinical care of patients with advanced disease. The shortened version of the There are several short tools which can be used to questionnaire contains 20 items suitable for routine use assess patients' functional status including the Karnof- during the initial assessment by a professional. It allows sky Index [39-41], the WHO 5 point Scale [42] and the the patient's perception of their needs to be assessed ECOG Score [43]. More detailed instruments are avail- and avoids multiple assessments by different disciplines able to assess disability such as the 10 scale Barthel within the palliative care team. It shows changes with Index [44] and the Index of Independence in Activities time and has been shown to have internal consistency. of daily living [45], but these longer instruments have The functional living index for cancer (FLI-C) looks not been validated for this group of patients. at physical symptoms and activity, mood, work and social interaction using a linear analogue format [60]. It (b) Symptom distress is easy to use, administer and score, but too lengthy for repeated administration in routine clinical practice and Several scales have been developed to assess symptoms requires supplementary questions for some specific and symptom distress. McCorkle [46] has reviewed symptoms. It has been validated on patients with difthese in detail, including the symptom profile instru- ferent stages of cancer and on different treatments [21]. ment developed to document the occurrence of sympThe Rotterdam Symptom Check List includes 30 toms during active treatment [47] and the symptom symptoms with 8 scales to assess daily activities. It is distress scale [48]. well validated, easily administered and rapidly scored. Pain is the most feared symptom of cancer. The It is useful for assessment of physical symptoms, treatMcGill Pain Questionnaire is regarded as the 'gold ment toxicity and psychosocial morbidity [61]. It has standard' for assessing pain [49|: a shortened version high sensitivity and specificity and seems effective in has been used for terminally ill patients [50]. The advanced cancer patients [21, 61]. The symptom check-
16 list may not be sufficient for clinical practice or research trials because it only covers some pain problems: sore muscles, low back pain, headaches, abdominal ache and sore mouth. The Spitzer Quality of Life of Cancer patients [62] was carefully developed, by reference to cancer patients and their relatives, to assess five areas including physical activity, daily living, perception of own health, support from family and friends and outlook on life. It is designed for use by physicians to assess the relative benefits and risks of various treatments for serious illness and of supportive programmes such as palliative care or hospice service. Correlation between clinician and patient rated versions of the score is poor as patients give themselves somewhat higher scores than do their doctors, their friends, their relatives and other health professionals. This score may underestimate the ability of the human mind and spirit to compensate for major infirmity. It is short enough to monitor changes with time in a patient [23]. The validity of this instrument for terminally ill patients has been questioned. The Cancer and Leukaemia Group B Studies from the United States have developed flexible scores for use in different types of cancer [63] but these have not been tested in palliative care. The EORTC questionnaire has been designed for a heterogeneous group of cancer patients specifically to measure quality of life using a variable multi-dimensional method [64] which can be adapted to the dimension being addressed and the cancer type. This is a two page questionnaire administerd in about ten minutes and appears valid and reliable. The key dimensions assessed include symptoms of disease, side effects of treatment, physical functioning, psychological distress, social interaction, sexuality, body image and satisfaction with medical care [65]. The scale, which has copyright registered, is currently being validated through its reported use in major clinical trials and appears promising for use in palliative care. The linear analogue self-assessment (LASA) scale uses 25 items; to assess symptoms psychosocial consequences, physical indices and personal relationships [66]. It is simple, sensitive and reproducible [25]. A patient evaluated problem score (PEPS) has been recently developed for routine clinical use in hospice patients. The majority of patients appear able to complete assessment up to the last 14 days of life [15] with some patient's assesments continuing into the last week of life. This may prove particularly useful for audit of palliative care, but has not been validated for use in clinical trials.
Other scores which have not been tested in palliative care There are several patient questionnaires whose main use is in non-cancer patients or those with early cancer. The Nottingham Health Profile [67], the Medical Out-
comes Study [68] and a sequential cue-weighting score (SEIQOC) [12] have doubtful relevance in cancer patients. There are many psychosocial scales which can be of use in early cancer but are too lengthy for palliative care. These include the sickness impact profile [69], the personal health survey [70], the Index of Well-being [71], a general health questionnaire [51], psycho-social adjustment to illness scale [72], and the present state examination [73]. Multi-dimensional scores include the Ontario Cancer Institute Quality of Life Scale, developed for use in patients with breast cancer [74] undergoing treatment, the short Padilla Quality of Life scale [75] which concentrates on cancer patients with pain [21], the lengthy Rosser and Kind Distress/Disability Matrix [76] and the simpler Medical Research Council (UK) [77] are less suitable for use in patients with advanced cancer than those mentioned previously. Conclusion The measurement of quality of life is of increasing importance. A variety of instruments are available which cover physical and psychosocial well-being. The use of these in palliative care is difficult because the patients are very ill and may be rapidly deteriorating. Nevertheless it is important to recognise that quality of life is an individual and personal judgement. Health Professionals should not make assumptions on behalf of their patients. References 1. WHO Expert Committee Report Cancer pain relief and palliative care. Technical Report Series No. 804, Geneva, WHO, 1990. 2. Schipper. Quality of life of patients: The final common pathway. J Pall Care 1992; 8 (3): 5-7. 3. Selby P, Robertson B. Measurement of quality of life in patients with cancer. Cancer Surveys 1987; 6 (3): 521-43. 4. Ahmedzai S. Palliative care in oncology: Making quality the end point (editorial). Ann Oncol 1990; 1 (6): 396-8. 5. Byrne M. Cancer, chemotherapy and quality of life. BMJ 1992; 304:1523-4. 6. Bergner M, Bobbitt RA, Carter WB et al. The sickness impact profile: Development and final revision of a health status measure. Med Care 1981; 19: 787-805. 7. Barofsky I. Function states: Quality of life. Cancer 1984; 53 (suppl.): 2299-302. 8. Dupuis G. International perspectives on quality of life in cardio vascular disease: The quality of life systemic inventory. Presented at Workshop on Quality of Life in Cardio Vascular Disease, Winston-Salem,NC,June 1988. 9. Gill WM. Subjective well-being: properties of an instrument for measuring this in the chronically ill. Soc Sci Med 1984; 18 (8): 683-91. 10. Cohen SR, Mount BM. Quality of life in terminal illness: Defining and measuring subjective well-being in the dying. J Pall Care 1992; 8 (3> 40-5. 11. Caiman KC. Quality of life in cancer patients - an hypothesis. J Med Ethics 1984; 10: 124-7.
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Received 27 September 1993; accepted 30 September 1993. Correspondence to: Dr. Ilora Finlay Holme Tower Marie Curie Centre Bridgeman Road Penarth South Wales CF64 3YB, UK
Special article Quality of life assessment in palliative care I. G. Finlay1 & R. Dunlop2 1
Holme Tower Marie Curie Centre, Penarth; 2St. Christopher's Hospice, Sydenham, London, U.K.
Summary Palliative care aims to improve the quality of life of patients through attention to physical, psychological, social and spiritual distress. Assessment of quality of life, expressed as a global score, is difficult because patients are too ill for long interviews, but relatives and professionals are poor proxy respondents for patients. Quality of life assessment tools must be multidimensional, considering both physical and psycho-
What is palliative care
social issues, must be quick and easy to administer and score and must be sufficiently sensitive to detect changes with time. Quality of life assessment has audit and routine clinical uses; it is an essential consideration in any research involving the patient with advanced cancer. The different types of questionnaire assessment tool are discussed in detail. Key words: cancer, hospice, palliative care, quality of life, questionnaire, trials
Defining quality of life
'Palliative' derives from the Latin word 'pallium' which An awareness that some active treatments carry a huge means 'cloak'. The word was adopted into the modern burden led to the first attempts to assess scientifically hospice movement because it characterised the use of the risks and burdens of treatment against the benefits. For all palliative treatments, the benefits must always symptomatic treatments that did not alter the underlying disease process, usually cancer, and the fatal out- outweigh their risks and burdens; good days or weeks come. The principles guiding these treatments were must not be undermined by futile attempts to cure. developed in hospice inpatient units. The attention to Quality of life measures are essential to evaluate such the physical, psychological, social, and spiritual needs treatments since survival as an outcome measure is of terminally ill patients and their families became meaningless [2-5]. Increasing discussion of quality of life issues in both known as 'hospice care' or 'terminal care'. In the oncology setting, 'palliative' often has a differ- lay and medical press had led to pressure for 'quality of ent meaning and describes the use of anti-cancer treat- life' to always be considered in clinical decision making. However, quality of life is a term used as if it is an ments such as surgery, radiotherapy, and hormone or chemotherapy for patients who cannot be cured. These absolute that can be measured but no 'gold standard' treatments are used to relieve symptoms by reducing method of assessment exists that is universally acceptable, universally applicable and universally reliable [6]. tumour burden and may sometimes prolong life. Many patients are in the palliative or terminal phase There appears to be no agreed definition of the term of their illness at diagnosis. Palliative care has a major 'quality of life' [7]. Dupuis [8] suggested that impaired contribution to make early in the course of such can- quality of life represents the deficit between a person's cers and attempts to define a point at which a patient desired and actual levels of wellbeing. Most authors rebecomes terminally ill have persistently failed. The cognise that a satisfactory quality of life is an individual model represented by Stjernsward (Fig. 1) [lj suggests judgement [3, 9,10] and good quality as defined by one an interplay between treatments which may have a person may differ dramatically from good quality as curative or life prolonging effect (cytostatic and cyto- defined by another [11, 12]. A patient's report of their toxic treatments including surgery) and those aimed at controlling physical and psychosocial symptoms. Time For the purpose of this review, 'palliative care' refers to the application of the principles and strategies of Cancer pain relief and Bereavement care hospice care to patients with incurable cancer wherever palliative care they might be: hospice, home, or other setting such as Death an acute hospital. Palliative care can include the use of Diagnosis anti-cancer treatments with palliative intent. Fig. I.
14 quality of life often differs from that of the relatives or professionals, who are therefore poor proxy-respondents [13,14]. It is often assumed that hospice patients do not wish active intervention. However, even in a hospice setting [15] patients with cancer are much more likely that people who do not have cancer to opt for radical treatment in an attempt to relieve symptoms even when the chance of response is low [16]. Most authors also recognise that quality of life comprises many different facets [17—19]. Grant et al. [20] identified five major domains of quality of life: physical well-being, psychological well-being, social and interpersonal well-being, financial and material well-being, and sequels of diseases and treatment. Maguire and Selby [21] considered symptoms due to cancer, adverse effects of treatments, physical functioning, social interaction, psychological adjustment, sexual functioning and body image as constituent elements of quality of life which should be measured in clinical trials of active treatments. Their review of available instruments is recommended. General considerations about measuring quality of life Quality of life instruments must be short so as not to burden the patient, should take no more than 15 minutes to collect and score, and must be immediately acceptable and understandable to all the clinical members of the research team [6]. Lengthy interviews may be distressing and traumatic, particularly where time is short and a sick patient is aware of impending death [22]. Long interviews cannot be used routinely to re-assess a patient's clinical progress; compliance may be poor in studies if the quality of life measurement involves repeating a tiring interview [23]. The way questions are presented can dramatically influence the results obtained [24]. Linear analogue scales have been found to be satisfactory, particularly in pain measurement, but some patients find the concept difficult and want to score outside the fixed end as their condition worsens [25, 26]. Questions focussed on a single area may fail to assess the impact of disease on the patient's whole life, but conversely, a comprehensive enquiry may inadequately assess an important symptom despite being lengthy and time consuming. Self assessment avoids an interviewer bias and requires fewer resources but an interviewer may uncover important additional information [27]. The questionnaire should focus from one to seven days preceding the assessment and should avoid major treatment interventions [27]. Questionnaire design Emotional distress occurs independently of physical distress although both may interreact in the total suffer-
ing a patient experiences [28]. Patients with overwhelming symptoms may present distorted quality of life data since the intensity of distress caused by the symptom may mask or interfere with the reporting of other areas of distress through loss of cognitive clarity or inability to undertake an interview or questionnaire [14]. Thus the measure used must be sufficiently sensitive to detect several changes of clinical significance rather than the global distress score. Recently, patientled assessments have been developed for use in routine practice [15]. Difficulties in measuring the quality of life of terminally ill patients When cancer patients reach the last weeks of life, they experience an increasingly rapid decline both physically and mentally. Mor [29] found that the average number of physical symptoms increased and over half of the patients were moribund or very sick in the last week of their life. Only one-third of patients were able to answer questions about the severity of pain in the final week. The group of patients who could not respond had more symptoms. The average length of stay on hospice programmes is usually only days to weeks so it can be very difficult to obtain meaningful quality of life data from these patients. Mor [29] suggested a model for deciding what aspects of hospice patients' quality of life should be measured. Performance status and cognitive functioning are most profoundly affected and characterise the patients' decline [30, 31]. These aspects can be assessed by a family member in contact with the patient for long periods. Pain and symptom control are the next important element which can be relatively easily assessed. Only when good symptom control has been achieved can meaningful improvement in psychosocial aspects be attempted. Psychosocial measures have to be short as well as specific, avoiding any reliance on physical symptoms as indicators of mood disturbance for example.
Why measure quality of life Quality of life can be used to demonstrate the responses of patients to specific cancers |32], to examine symptom relief, to compare treatment responses, or to demonstrate the effects of specific rehabilitative approaches to cancer patients. This data can then assist planning and evaluating care [20]. In controlled clinical trials, direct measurement of quality of life is an important outcome measure [21]. It may be possible to recommend a treatment because it produces the best quality of life even if no survival advantage is demonstrated [21]. When one treatment produces satisfactory quality of life but unsatisfactory survival or vice versa [26] specific additional questions
15
about the disease or treatment may need to be asked before difficult value judgements are made [21]. When comparing studies the quality of life instrument must be relevant to both study populations [33]. When comparing places and systems of care, erroneous conclusions may be drawn from comparisons if the quality of life index used cannot detect these important differences [26] such as interaction with loved ones, comfort and familiarity, personal care and overall sense of personhood [34]. These may not be detected by a sample. In routine clinical practice an analysis of the patient's suffering and hence their quality of life can help guide clinical care [28]. Quality of life data is being used to make utility judgements for health resource allocation [35, 36]. Quality of Life Adjusted Years [37] (QUALY) is an important concept, but has not been validated against the judgements of real patients and real predicaments and is open to misapplication and abuse. Amongst those with disabilities the term 'QUALY' is feared as it places a financial value on life to potentially determine whether that life is or is not worth 'saving' with medical intervention. The Oregon Health Plan has demonstated that lay persons' judgements about the quality of life utilities of various disease outcomes can be combined with cost-effectiveness data to produce a more equitable approach to rationing of health care [38]. Community judgements emphasised the importance of funding comfort care and pain relief for terminally ill patients, regardless of diagnosis, which resulted in this category of care being ranked very highly in the Oregon Plan.
Memorial Pain Assessment Card (MPAC) has been validated for hospitalised cancer patients [51]. Psychosocial measures Some scores such as the general health questionnaire [52] and the hospital anxiety depression scale [53] were developed for non-cancer populations. The latter can be particularly useful in cancer patients, since it separates out the emotional components of depression and anxiety from the somatic manifestations which often resemble the physical disturbances caused by cancer. It is easy to administer and score and has superseded the Symptom Check List - 90 [54]. A shortened 14 item version of the Profile of Mood States (POMS), designed to assess mood states and changes in mood, has been developed for cancer patients [55]. The inventory of current concerns is a larger scale measuring potential sources of distress for people with serious illness [56]. McDowell and Newell [57] have reviewed the general measures of social and health interaction which are available, although Willey and Silliman [58] have since published a short three-item social activity scale.
Multidimensional assessments
The longer questionnaires such as the Cancer Inventory of Problem Situations (CIPS) [59] comprehensively cover both physical and psychosocial issues, but are too time consuming for ill patients to complete [29]. Assessing physical problems A questionnaire designed specifically to assess suffering in terminal illness was developed by McAdam (a) Functional status and Smith [28] to assist in the clinical care of patients with advanced disease. The shortened version of the There are several short tools which can be used to questionnaire contains 20 items suitable for routine use assess patients' functional status including the Karnof- during the initial assessment by a professional. It allows sky Index [39-41], the WHO 5 point Scale [42] and the the patient's perception of their needs to be assessed ECOG Score [43]. More detailed instruments are avail- and avoids multiple assessments by different disciplines able to assess disability such as the 10 scale Barthel within the palliative care team. It shows changes with Index [44] and the Index of Independence in Activities time and has been shown to have internal consistency. of daily living [45], but these longer instruments have The functional living index for cancer (FLI-C) looks not been validated for this group of patients. at physical symptoms and activity, mood, work and social interaction using a linear analogue format [60]. It (b) Symptom distress is easy to use, administer and score, but too lengthy for repeated administration in routine clinical practice and Several scales have been developed to assess symptoms requires supplementary questions for some specific and symptom distress. McCorkle [46] has reviewed symptoms. It has been validated on patients with difthese in detail, including the symptom profile instru- ferent stages of cancer and on different treatments [21]. ment developed to document the occurrence of sympThe Rotterdam Symptom Check List includes 30 toms during active treatment [47] and the symptom symptoms with 8 scales to assess daily activities. It is distress scale [48]. well validated, easily administered and rapidly scored. Pain is the most feared symptom of cancer. The It is useful for assessment of physical symptoms, treatMcGill Pain Questionnaire is regarded as the 'gold ment toxicity and psychosocial morbidity [61]. It has standard' for assessing pain [49|: a shortened version high sensitivity and specificity and seems effective in has been used for terminally ill patients [50]. The advanced cancer patients [21, 61]. The symptom check-
16 list may not be sufficient for clinical practice or research trials because it only covers some pain problems: sore muscles, low back pain, headaches, abdominal ache and sore mouth. The Spitzer Quality of Life of Cancer patients [62] was carefully developed, by reference to cancer patients and their relatives, to assess five areas including physical activity, daily living, perception of own health, support from family and friends and outlook on life. It is designed for use by physicians to assess the relative benefits and risks of various treatments for serious illness and of supportive programmes such as palliative care or hospice service. Correlation between clinician and patient rated versions of the score is poor as patients give themselves somewhat higher scores than do their doctors, their friends, their relatives and other health professionals. This score may underestimate the ability of the human mind and spirit to compensate for major infirmity. It is short enough to monitor changes with time in a patient [23]. The validity of this instrument for terminally ill patients has been questioned. The Cancer and Leukaemia Group B Studies from the United States have developed flexible scores for use in different types of cancer [63] but these have not been tested in palliative care. The EORTC questionnaire has been designed for a heterogeneous group of cancer patients specifically to measure quality of life using a variable multi-dimensional method [64] which can be adapted to the dimension being addressed and the cancer type. This is a two page questionnaire administerd in about ten minutes and appears valid and reliable. The key dimensions assessed include symptoms of disease, side effects of treatment, physical functioning, psychological distress, social interaction, sexuality, body image and satisfaction with medical care [65]. The scale, which has copyright registered, is currently being validated through its reported use in major clinical trials and appears promising for use in palliative care. The linear analogue self-assessment (LASA) scale uses 25 items; to assess symptoms psychosocial consequences, physical indices and personal relationships [66]. It is simple, sensitive and reproducible [25]. A patient evaluated problem score (PEPS) has been recently developed for routine clinical use in hospice patients. The majority of patients appear able to complete assessment up to the last 14 days of life [15] with some patient's assesments continuing into the last week of life. This may prove particularly useful for audit of palliative care, but has not been validated for use in clinical trials.
Other scores which have not been tested in palliative care There are several patient questionnaires whose main use is in non-cancer patients or those with early cancer. The Nottingham Health Profile [67], the Medical Out-
comes Study [68] and a sequential cue-weighting score (SEIQOC) [12] have doubtful relevance in cancer patients. There are many psychosocial scales which can be of use in early cancer but are too lengthy for palliative care. These include the sickness impact profile [69], the personal health survey [70], the Index of Well-being [71], a general health questionnaire [51], psycho-social adjustment to illness scale [72], and the present state examination [73]. Multi-dimensional scores include the Ontario Cancer Institute Quality of Life Scale, developed for use in patients with breast cancer [74] undergoing treatment, the short Padilla Quality of Life scale [75] which concentrates on cancer patients with pain [21], the lengthy Rosser and Kind Distress/Disability Matrix [76] and the simpler Medical Research Council (UK) [77] are less suitable for use in patients with advanced cancer than those mentioned previously. Conclusion The measurement of quality of life is of increasing importance. A variety of instruments are available which cover physical and psychosocial well-being. The use of these in palliative care is difficult because the patients are very ill and may be rapidly deteriorating. Nevertheless it is important to recognise that quality of life is an individual and personal judgement. Health Professionals should not make assumptions on behalf of their patients. References 1. WHO Expert Committee Report Cancer pain relief and palliative care. Technical Report Series No. 804, Geneva, WHO, 1990. 2. Schipper. Quality of life of patients: The final common pathway. J Pall Care 1992; 8 (3): 5-7. 3. Selby P, Robertson B. Measurement of quality of life in patients with cancer. Cancer Surveys 1987; 6 (3): 521-43. 4. Ahmedzai S. Palliative care in oncology: Making quality the end point (editorial). Ann Oncol 1990; 1 (6): 396-8. 5. Byrne M. Cancer, chemotherapy and quality of life. BMJ 1992; 304:1523-4. 6. Bergner M, Bobbitt RA, Carter WB et al. The sickness impact profile: Development and final revision of a health status measure. Med Care 1981; 19: 787-805. 7. Barofsky I. Function states: Quality of life. Cancer 1984; 53 (suppl.): 2299-302. 8. Dupuis G. International perspectives on quality of life in cardio vascular disease: The quality of life systemic inventory. Presented at Workshop on Quality of Life in Cardio Vascular Disease, Winston-Salem,NC,June 1988. 9. Gill WM. Subjective well-being: properties of an instrument for measuring this in the chronically ill. Soc Sci Med 1984; 18 (8): 683-91. 10. Cohen SR, Mount BM. Quality of life in terminal illness: Defining and measuring subjective well-being in the dying. J Pall Care 1992; 8 (3> 40-5. 11. Caiman KC. Quality of life in cancer patients - an hypothesis. J Med Ethics 1984; 10: 124-7.
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Received 27 September 1993; accepted 30 September 1993. Correspondence to: Dr. Ilora Finlay Holme Tower Marie Curie Centre Bridgeman Road Penarth South Wales CF64 3YB, UK