Patients' experiences of Addison's disease | |
Addison’s disease patients’ survey in Australia. Diagnosis and management. Fateh-Ali M Ladhani. Coffs Harbour: Australian Addison’s Disease Association, 2003 (174 pp). No ISBN. |
It is said that
the combination of diabetes mellitus and ignorance is a fatal one. Gone are the days when the patronising paternal physician was the repository of the natural history of a disease and the ramifications of its management. Now, the exploding access to current information distilled into best practice, makes partners of those who suffer and those who treat.
In fact, the amount of information that is conveyed to patients often imposes a heavy burden of worry and bewilderment on them. It is not surprising then that patients have taken to forming organisations, large and small, in order to better inform, reliably reassure and broadly advise one another of their responsibilities for their own survival and well being. In joining such organisations patients identify themselves with the disease and thus make epidemiological and demographic information more readily accessible, clear and available for study. This compact but painstaking review of Addison’s disease in Australia exemplifies this process. The book sets out to describe the outcome of a study involving a significant number of those with this condition. They comprise those known to the Addison’s Disease Association through membership and those recruited by other means. (This yielded a total of 225, although it is suggested that there are 449 individuals afflicted with the condition in Australia.) The study falls naturally into three sections. The first states the aims of the research and its implementation, and this might well form a template for reviewing a number of other well-defined disease states. The questionnaire itself is then subjected to critical and statistical analysis, yielding a wide range of important information on demography, incidence and natural history in terms of delay in diagnosis and modes of management. As well as the more objective questions, there are other, more subjective ones and patient responses to these are less easy to quantify. Considerable and revealing information is gained on patients’ attitudes about the clinical management they have received and the degree of satisfaction felt. There is also an examination of actual therapy experiences and the extent of patient self-knowledge of the disease, all of which will strengthen the patient and should alert the practitioner. The final section contains an easy-to-understand and up-to-date account of the nature of Addison’s disease, its manifestations and management. While directed toward the patient in an almost admonitory style, all doctors — especially endocrinologists — may read it with acceptance and great benefit! Alex K Cohen
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