The development of a method for assessing the quality of life of cancer patients

Abstract

Summary Although the need for a method of measuring the quality of life of patients undergoing therapy for cancer has been widely recognised, no adequately evaluated or feasible method has been established. We describe a method in which 31 items were assessed by patient self report using linear analogue scales. Eighteen items inquiring about general health problems were derived from the Sickness Impact Profile, an established method of assessing the effect of health upon behaviour and function. Thirteen items inquiring about major problems associated with breast cancer were derived from clinical experience and the opinions of patients with this disease.Each item of the measurement method (instrument) has been evaluated for content, feasability, reliability and validity by methods that are widely used in psychometry but less familiar in medicine. It appeared easy to use, acceptable and reliable in these assessment. Validity was evaluated indirectly since no standard measurements of quality of life exist for comparison. Most items appeared valid when compared to alternative measurement methods including the Sickness Impact Profile and evaluation by a physician in a structured interview. The correlations between items in the instrument were analysed by factor analysis and seemed to fit with the clinical features of breast cancer. The method distinguished between clinically distinct groups of patients and detected changes with time.The study illustrates the possible approaches to the scientific evaluation of methods for measuring subjective features of patients lives. This method appears suitable for some purposes to measure quality of life in breast cancer and is intended to be flexible enough to be modified for other diseases. However, further evaluation, development and refinement will be needed before routine clinical application can be recommended.

Who should measure quality of life, the doctor or the patient?

“…The validation of these instruments (Gough et al, 1983;Selby et al, 1984;Spitzer et al, 1981) contributing elements in the HAD scale, worry and the inability to look forward to things, suggest that the cancer patient is anxious and worried chiefly because of worry about his/her future, and perhaps this problem area could be addressed more directly. The Spitzer scale appears to present a similar picture of inappropriate questions.…”

“…The need to objectively measure quality of life during clinical trials of anti-cancer therapy is, however, widely recognised, as treatment is often toxic and is frequently given with palliative rather than curative intent. Several instruments have been developed to quantitate these subjective parameters (Coates et al, 1983;Gough et al, 1983;Padilla et al, 1983;Priestman & Baum, 1976;Presant et al, 1981;Selby et al, 1984;De Haas & Van Knippenburg, 1985). The question is no longer whether these factors should be measured, but what is the most reliable and practical means of obtaining these essential data.…”

Quality of life in patients with prostatic carcinoma: A review and results of a study in N+ disease Prostate-specific antigen as predictor of quality of life

“…The purpose of the present study was to examine the impact of immediate or delayed treatment on quality of life parameters. The reliability and validity of all components of the questionnaire used in this study have already been proven in former studies [2,13,29]. Consequently we may assume that the quality of life parameters can be appropriately assessed with the instruments used.…”

“…The questionnaire consisted of the EORTC Core Quality of Life questionnaire (EORTC QLQ-C30) [2], a global measurement of quality of life (Selby Uniscale) [29], the International Prostate Symptom Score (IPSS) [3], the Sexual Behaviour questionnaire as described by Derogatis and Kourlesis [13], and some questions about the side effects of hormonal treatment (including hot flushes), as well as questions about sexual activity before prostatic cancer was diagnosed. In total, the questionnaire contained 59 items, which were all translated into Dutch.…”

Multiattribute utility assessment of outcomes of treatment for head and neck cancer

“…However, despite the importance of assessing outcome of treatment, a simple clinically relevant scale has not been developed, partly because the best and worst health states at the extremities of such a scale are not obvious. An overall measure of health outcome in this context must include social, economic, physical and psychological aspects of health (Selby et al, 1984). Although well-validated scales exist to assess psychological health in isolation (Telfer and Shepherd, 1993), assessment of the physical and functional outcomes of treatment, together with the social effects of these, has traditionally been highly subjective.…”