Symptomatology of cancer patients in palliative care: content validation of self-assessment questionnaires against medical records

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Abstract

To elucidate which symptoms or problems to measure when evaluating palliative care, we assessed the content validity of selected patient self-assessment questionnaires used to evaluate palliative care: the European Organization for Research and Treatment of Cancer-Quality of Life-Core 30 (EORTC QLQ-C30), the Edmonton Symptom Assessment System (ESAS), the Palliative Care Outcome Scale (POS), the McGill Quality of Life Questionnaire (MQOL) and the Memorial Symptom Assessment Scale (MSAS). The content of the questionnaires was compared against the symptoms and problems noted in the medical records of 171 consecutive cancer patients on their first admission to a department of palliative medicine. From the records, 63 different symptoms were listed. Two questionnaires covered almost all of the prevalent symptoms/problems: the EORTC QLQ-C30 covered 10 and the MSAS 11 of the 12 most frequent problems. Researchers selecting instruments for evaluating palliative care may use the present study and other reviews to examine to what degree a given selection of instruments cover the symptoms/problems targeted by palliative care physicians.

Introduction

In recent years, attention on palliative medicine has increased considerably, thus increasing the need for evaluation of the effect and quality of treatment. However, results from palliative studies are often difficult to compare, as many different evaluation tools are used. There is no consensus as to which instruments are most appropriate.

The patient's physical symptoms, as well as psychological, social and spiritual problems may be described as ‘the palliative needs’, i.e. symptoms and problems for which the patient might expect intervention on arrival in a department of palliative medicine. A mapping of the patient's palliative needs forms the basis for the selection of questionnaires to assess the outcome of palliative care.

Many different questionnaires are used in palliative care 1, 2, 3, but no selection of questionnaires can cover all of the palliative needs of all patients. To minimise the burden on patients, questionnaires should be brief and manageable. The choice of questionnaires must therefore be made weighing feasibility with the demand for accurate and detailed information.

The aims of the present study were (1) to map the ‘symptoms’ of patients referred to a department of palliative medicine, and (2) to compare the resulting list of symptoms with five well-known questionnaires used to evaluate palliative care, in order to examine the extent to which the palliative needs described in the records can be measured by means of the questionnaires.

Section snippets

Patients

From its opening on 17 May 1997 to 28 April 1999, 193 cancer patients were referred to the Department of Palliative Medicine at Bispebjerg Hospital, Copenhagen. Patients admitted must have advanced cancer for which no curative or life-prolonging treatment can be offered, as well as pronounced palliative needs. Inclusion criteria for this study were age ⩾18 years and an inpatient status. On referral, 1 patient was less than 18 years old, and 21 patients had an outpatient status. Thus, the

Results

The demographic data and sites of primary malignancy in the patients are listed in Table 1. The survival from the day of first admission (when the medical record was written) ranged from 1 to 641 days after admission (median 28 days, mean 54.5 days).

From the 171 patient records, 867 cases of symptoms were recorded, of 63 different symptoms/problems. 35 of these symptoms were represented in one or more of the questionnaires. Pain was recorded most frequently (92%), followed by fatigue (43%),

Discussion

The symptom list (Table 2) reflects the existence of a large variety of symptoms in patients with advanced cancer. The most frequent problems found here did not differ strongly from what can be found in other reports (but most reports deal with much fewer symptoms). Several authors have found pain to be the most frequent symptom 9, 10, 11, 12; in some studies, fatigue/weakness was rated higher 13, 14, 15, 16, in others breathlessness [17], and in some poor appetite 18, 19. In one study,

Acknowledgements

The authors greatly acknowledge the financial support from the Danish Cancer Society.

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