A symptom-specific quality of life questionnaire for dysphagia.
Dysphagia is a common clinical problem. It is a distressing symptom which impacts negatively on the quality of life (QOL) of patients. There is increasing recognition that assessing QOL gives a broader perspective when deciding on and assessing the effect of treatment of our patients. An abstract concept, QOL is perceived by many clinicians in South Africa as difficult to measure and hence they are reluctant use it to help with therapeutic decision making. There is a dearth of QOL information from third-world countries and there is no locally developed or validated tool to measure it. If we are to provide more holistic health care to our patients this situation needs to be rectified and an appropriate tool developed. Aim: To develop a quality of life questionnaire specific for dysphagia relevant to our local population and validated it against established international questionnaires. The newly developed questionnaire needs to be comprehensive enough to measure general QOL as well as specific enough to be able to detect differences in QOL before and after treatment. Furthermore it needs to be brief and simple so as to be clearly understood and completed by our patient population with varied literacy competencies. Methods: We formulated a questionnaire related to dysphagia and other symptoms commonly associated with it and named it the Greys Dysphagia Quality of Life (GREYS DQOL) questionnaire. The questionnaire contained questions pertaining to generic QOL issues as well as to dysphagia-related QOL issues. We administered the questionnaire to a sample of patients together with two other internationally used questionnaires. One of the international questionnaires, the Short Form 36 (SF-36) quality of life questionnaire is a fully validated generic quality of life questionnaire which is extensively used world-wide and in South Africa. The other, the Dysphagia Score (DS), is a dysphagia-specific questionnaire used internationally to assess patients with conditions presenting with dysphagia. We compared the results of the three questionnaires as well as the compliance of patients in answering the three questionnaires. Demographic data collected included age, gender and level of education. Results: One hundred patients were entered into the study. The majority were males in their sixth and seventh decade of life. Most patients had no established diagnosis at the time of the study, but of those who did have a diagnosis, the most common cause of the dysphagia was malignant obstruction of the oesophagus. The literacy level amongst our patients was found to be low. Twenty three patients received no formal schooling and only 11 patients completed school to matriculation level. The quality of life of our sample population was poor according to all three questionnaires. The mean score for patients on the SADQOL questionnaire was 61 where a score of 0 indicates the best quality of life possible and a score of 100 indicates the worst quality of life possible. The mean score for patients on the SF-36 was 30, where 0 indicates the worst possible quality of life and 100 the best possible quality of life. The mean score for patients on the dysphagia score was 7, where 0 is the best score and 10 the worst. The results of the new questionnaire correlated well with that of the international questionnaires, confirming test-validity. The compliance of patients in answering questions in the GREYS DQOL questionnaire was superior to that of the internationally used questionnaires. The level of education influenced the scores of the SF-36 but not those of the GREYS DQOL and DS. This makes the GREYS DQOL more appropriate for use in our patient population. Conclusion: The GREYS DQOL questionnaire is simpler to comply with and correlates well with established international tools. We therefore consider it to be a good tool for assessing quality of life of patients presenting with dysphagia in South Africa. It can be used to assess QOL in our patients at initial presentation and after treatment is administered and is understood well by our patient population.