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Aim: To investigate the experiences of people with macular disease within the British healthcare system.
Method: The Macular Disease Society Questionnaire, a self completion questionnaire designed to survey the experiences of people with macular disease, was sent to 2000 randomly selected members of the Macular Disease Society. The questionnaire incorporated items about people's experiences with health professionals and the information and support provided by them at the time of diagnosis and thereafter.
Results: Over 50% thought their consultant eye specialist was not interested in them as a person and 40% were dissatisfied with their diagnostic consultation. 1 85 people thought their general practitioner (GP) was well informed about macular disease but twice as many people thought their GP was not well informed. About an equal number of people thought their GP was supportive as those who thought their GP was not supportive. A total of 1247 people were told "nothing can be done to help with your macular disease." A number of negative emotional reactions were experienced by those people as a result, with 61% of them reporting feeling anxious or depressed. Of 282 people experiencing visual hallucinations after diagnosis with macular disease, only 20.9% were offered explanations for them.
Conclusions: Many people with macular disease have unsatisfactory experiences of the healthcare system. Many of the reasons for dissatisfaction could be resolved by healthcare professionals if they were better informed about macular disease and had a better understanding of and empathy with patients' experiences.
Despite the prevalence of macular disease (1) and its growing incidence, (2) little research has focused on the psychological aspects of the condition. Those studies that have been carried out focused on the impact of the condition itself on quality of life and emotional wellbeing. (3) There are, however, more specific aspects of being diagnosed with a chronic condition such as macular disease that warrant investigation. One such is patients' satisfaction with health care.
The importance of satisfactory doctor-patient communication is well established in psychological research. Good patient centred communication is associated with adherence to treatment regimens, improved biomedical outcomes, reduced length of stay in hospital following treatment, and improved pain control and psychological functioning. (5) Studies of cancer patients emphasise the importance of giving the patient both adequate and accurate information. (6) Anxiety and depression have been shown to affect recall and comprehension of information in non-patients. (7) Other work, however, suggested that anxious patients have better recall of information because they attend more actively. (8) These findings indicate that there is no justification for the assumption that withholding information from patients will prevent increased anxiety.
Affective behaviour has been found to be the strongest factor in explaining patient satisfaction. (9) Ben-Sira (10) found that the affective quality of a consultation is particularly important when patients are anxious about their health, as they will be more sensitive to their doctors' attitudes. Patients who present with deteriorating vision are likely to be worried about their condition and they may be acutely sensitive to the consultant's approach. One aim of the present study was to gain a better understanding of people's experiences with health professionals.
In response to reports of unsatisfactory experiences with health professionals among members of the Macular Disease Society (a British charitable organisation), members of a local group of the society instigated the design and piloting of a questionnaire with which to survey the views and experiences of members of the society. The Macular Disease Society Questionnaire (MDSQ) contained some questions that were derived from the literature, but others were newly designed. Newly designed items included those that concerned people's experiences of health professionals (ophthalmologists, general medical practitioners, and optometrists) at the time of diagnosis and thereafter. They inquired about provision of information, the affective quality of consultations, and the perceived level of support given to patients.
Two thousand people were selected at random from the Macular Disease Society membership of approximately 7500 (in 1999, when the survey was …