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The unmet needs of patients with systemic lupus erythematosus: Planning for patient education

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Abstract

A needs assessment survey of 386 patients with Systemic Lupus Erythematosus (SLE) was conducted in New South Wales in late 1986. The diagnosis of SLE in these community-based responders was validated in a random subsample. Most of the respondents were female, with a diagnosis of SLE made between 8 and 15 years earlier. The commonest reported problems with their disease included depressed feelings, reduced activity, stress and changes in body image. The list of 19 reported problems was factor analyzed. Four factors were derived, in the areas of “emotional aspects,” “a lack of information,” “lifestyle restrictions,” and a fourth factor specifically for “lacking information about exercise and diet.” These four factors were used as specific educational themes in the development of the SLE patient education program in Sydney. The study highlights the importance of identifying clients' needs in the community as an essential antecedent to patient education program planning and development.

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    Citation Excerpt :

    Socio-economic studies reported dissatisfaction with the care received and a high economic impact due to incomes reduction because productivity drop or unemployment and health resources not covered by Public Health Services in Europe or Health Management Organizations in USA [15,19,23,24,32]. Common reasons explaining dissatisfaction with Health Care Services are unmet need for information, limited access to integrated specialized care and poor sensitivity of Health Care professionals [14–18,21,23–25,28–30,32]. Alternative Health Care services such as physiotherapy, chiropractic, acupuncture or naturopathy are used by around 20% of SLE patients [19,25].

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