Attitudes, access and anguish: a qualitative interview study of staff and patients’ experiences of diabetic retinopathy screening

Abstract

ObjectiveTo examine the experiences of patients, health professionals and screeners; their interactions with and understandings of diabetic retinopathy screening (DRS); and how these influence uptake.DesignPurposive, qualitative design using multiperspectival, semistructured interviews and thematic analysis.SettingThree UK Screening Programme regions with different service-delivery modes, minority ethnic and deprivation levels across rural, urban and inner-city areas, in general practitioner practices and patients’ homes.Participants62 including 38 patients (22 regular-screening attenders, 16 non-regular attenders) and 24 professionals (15 primary care professionals and 9 screeners).ResultsAntecedents to attendance included knowledge about diabetic retinopathy and screening; antecedents to non-attendance included psychological, pragmatic and social factors. Confusion between photographs taken at routine eye tests and DRS photographs was identified. The differing regional invitation methods and screening locations were discussed, with convenience and transport safety being over-riding considerations for patients. Some patients mentioned significant pain and visual disturbance from mydriasis drops as a deterrent to attendance.ConclusionsIn this, the first study to consider multiperspectival experiential accounts, we identified that proactive coordination of care involving patients, primary care and screening programmes, prior to, during and after screening is required. Multiple factors, prior to, during and after screening, are involved in the attendance and non-attendance for DRS. Further research is needed to establish whether patient self-management educational interventions and the pharmacological reformulation of shorter acting mydriasis drops, may improve uptake of DRS. This might, in turn, reduce preventable vision loss and its associated costs to individuals and their families, and to health and social care providers, reducing current inequalities.

Diabetic eye disease and screening attendance by ethnicity in New Zealand: A systematic review

“…To our knowledge no study has been undertaken in New Zealand to understand the barriers to attending DR screening. In England, a qualitative study of attenders, non‐attenders and screening staff identified factors affecting uptake included convenience of screening location, transport safety, appointment length and side effects of pupil dilation . In Australia, young adults were found to experience more barriers to attending DR screening compared to older adults, and these barriers tended to accumulate .…”

“…In England, a qualitative study of attenders, nonattenders and screening staff identified factors affecting uptake included convenience of screening location, transport safety, appointment length and side effects of pupil dilation. 36 In Australia, young adults were found to experience more barriers to attending DR screening compared to older adults, and these barriers tended to accumulate. 37 These factors are conceivably all at play in New Zealand, in addition to gaps in the health literacy, cultural competence and safety of DR services.…”

Barriers to and enablers of diabetic retinopathy screening attendance: a systematic review of published and grey literature

“…Many people with diabetes experience competing health problems that can overshadow concerns with their eyes. For some, missing a screening appointment might be attributable to a temporary illness or health problem [24,25,28], but for others it was a consequence of comorbidities [26,43,53] or the burden of diabetes [18,30,40].…”

“…Themes: Short-term effects of screening (11 studies) and concerns about the harmful effect of the screening procedure (four studies). Some people with diabetes reported that screening has negative short-term effects, for example, some dislike mydriatic eye drops (given to temporarily dilate the pupils) [32,55,59], which were often uncomfortable or, in some cases, painful [28,30,38]. In one case a woman had developed a phobia of these eye drops [25].…”

Effect of a tailored leaflet to promote diabetic retinopathy screening among young adults with type 2 diabetes: a randomised controlled trial.

“…Despite efforts to conceal the true nature of the study, asking about self-management behaviour from the outset may have elicited a social desirability bias, of which younger people are considered susceptible (26). Accuracy of self-report is also vulnerable to recall bias, particularly in the light of acknowledged confusion regarding the difference between screening for DR and a standard eye check (29). Future studies could overcome risk of bias by not only including definition of screening (as was done in the current study) but also corroboration of self-report with clinical record data (35).…”