Personalising screening of sight-threatening diabetic retinopathy - qualitative evidence to inform effective implementation

Paula Byrne,Clare Thetford,Mark Gabbay,Pam Clarke ,Emily Doncaster,Simon Harding

doi:10.1186/s12889-020-08974-1

Abstract

BackgroundInternationally, systematic screening for sight-threatening diabetic retinopathy (STDR) usually includes annual recall. Researchers and policy-makers support extending screening intervals, citing evidence from observational studies with low incidence rates. However, there is little research around the acceptability to people with diabetes (PWD) and health care professionals (HCP) about changing eye screening intervals.MethodsWe conducted a qualitative study to explore issues surrounding acceptability and the barriers and enablers for changing from annual screening, using in-depth, semistructured interviews analysed using the constant comparative method. PWD were recruited from general practices and HCP from eye screening networks and related specialties in North West England using purposive sampling. Interviews were conducted prior to the commencement of and during a randomised controlled trial (RCT) comparing fixed annual with variable (6, 12 or 24 month) interval risk-based screening.ResultsThirty PWD and 21 HCP participants were interviewed prior to and 30 PWD during the parallel RCT. The data suggests that a move to variable screening intervals was generally acceptable in principle, though highlighted significant concerns and challenges to successful implementation. The current annual interval was recognised as unsustainable against a backdrop of increasing diabetes prevalence. There were important caveats attached to acceptability and a need for clear safeguards around: the safety and reliability of calculating screening intervals, capturing all PWD, referral into screening of PWD with diabetic changes regardless of planned interval. For PWD the 6-month interval was perceived positively as medical reassurance, and the 12-month seen as usual treatment. Concerns were expressed by many HCP and PWD that a 2-year interval was too lengthy and was risky for detecting STDR. There were also concerns about a negative effect upon PWD care and increasing non-attendance rates. Amongst PWD, there was considerable conflation and misunderstanding about different eye-related appointments within the health care system.ConclusionsImplementing variable-interval screening into clinical practice is generally acceptable to PWD and HCP with important caveats, and misconceptions must be addressed. Clear safeguards against increasing non-attendance, loss of diabetes control and alternative referral pathways are required. For risk calculation systems to be safe, reliable monitoring and clear communication is required.

Highlights

The rising prevalence of diabetes over the past 30 years presents challenging health impacts and costs to individuals, health care systems and wider society
Implementing variable-interval screening into clinical practice is generally acceptable to people with diabetes (PWD) and health care professionals (HCP) with important caveats, and misconceptions must be addressed
For breast cancer there are moves to identify risk-stratified screening strategies to lower the rates of over diagnosis and to prevent deaths [14]. Such directions illustrate a general move within medicine to personalised health care and potentially to re-allocate resources to those most in need; in the case of diabetic retinopathy (DR) screening focusing on non-attenders

Summary

Introduction

The rising prevalence of diabetes over the past 30 years presents challenging health impacts and costs to individuals, health care systems and wider society. Evidence suggests that it may be safe to screen low-risk people at longer intervals [5,6,7,8,9,10,11] and the interval has been extended in some countries [12, 13] This evidence is not conclusive and is based largely on modelling rather than experimental research. For breast cancer there are moves to identify risk-stratified screening strategies to lower the rates of over diagnosis and to prevent deaths [14] Such directions illustrate a general move within medicine to personalised health care and potentially to re-allocate resources to those most in need; in the case of DR screening focusing on non-attenders. There is little research around the acceptability to people with diabetes (PWD) and health care professionals (HCP) about changing eye screening intervals

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