Patients in waiting: a qualitative study of type 2 diabetes patients' perceptions of diagnosis

OBJECTIVE: Our aim was to examine how diagnosis is perceived by a sample of newly diagnosed type 2 diabetes patients. METHODS: A qualitative study was carried out in the Lothian region of Scotland using in-depth interviews of 40 newly diagnosed type 2 diabetes patients recruited from 16 general practices in four Local Health Care Co-operatives and three hospital clinics. Purposive selection ensured that the sample's demographic characteristics were broadly representative of newly diagnosed type 2 diabetes patients in Lothian/Scotland. RESULTS: Clarity, timing and authority of the diagnosis delivery were highly salient for patients. Many patients perceived their GP as unwilling to deliver/confirm the diagnosis. Patients who were not referred to hospital were unclear why a referral had not taken place. Those referred perceived confirmation of diagnosis by the consultant as a central reason. Waiting for a hospital appointment could be problematic for patients. Most wanted the diagnosis confirmed before they felt confident making lifestyle changes. Input from health services during the period prior to the hospital visit was highly valued. Waiting was taken by some asymptomatic patients to indicate that they did not have the condition. Others used a lengthy period of waiting to confirm their view that they had a 'milder' or 'less serious' form of diabetes than other patients. CONCLUSIONS: Adequate input from practitioners is needed to ensure that diagnosis is fully exploited as a crucial period in which patients learn to adapt to their condition. Being explicit about the diagnosis at first contact may avoid the problem of patients feeling 'in limbo' or uncertain whether they have type 2 diabetes. Practitioners should convey to patients that post-diagnosis/initial care is a process, stages of this process should be clarified to avoid misunderstanding and services should be integrated during this interim period to best effect.