Predicting participation of people with impaired vision in epidemiological studies

BACKGROUND: The characteristics of the target group and the design of an epidemiologic study, in particular the recruiting methods, can influence participation. People with vision impairment have unique characteristics because those invited are often elderly and totally or partially dependent on help to complete daily activities such as travelling to study sites. Therefore, participation of people with impaired vision in studies is less predictable than predicting participation for the general population. METHODS: Participants were recruited in the context of a study of prevalence and costs of visual impairment in Portugal (PCVIP-study). Participants were recruited from 4 Portuguese public hospitals. Inclusion criteria were: acuity in the better eye from 0.5 decimal (0.30logMAR) or worse and/or visual field of less than 20 degrees. Recruitment involved sending invitation letters and follow-up phone calls. A multiple logistic regression model was used to assess determinants of participation. The J48 classifier, chi-square and Fisher’s exact tests were applied to investigate the possible differences between subjects in our sample. RESULTS: Individual cases were divided into 3 groups: immediate, late and non-participants. A participation rate of 20% was obtained (15% immediate, 5% late). Factors positively associated with participation included years of education, annual hospital attendance, and intermediate visual acuity. Females and greater distance to the hospital were inversely associated with participation. CONCLUSION: In our study, a letter followed by a phone call was efficient to recruit a significant number of participants from a larger group of people with impaired vision. However, the improvement in participation observed after the phone call might not be cost-effective. People with low levels of education and women were more difficult to recruit. These findings need to be considered to avoid studies whose results are biased by gender or socio-economic inequalities of their participants. Young subjects and those at intermediate stages of vision impairment, or equivalent conditions, may need more persuasion than other profiles. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12886-018-0889-9) contains supplementary material, which is available to authorized users.