Does the feedback of blood results in observational studies influence response and consent? A randomised study of the Understanding Society Innovation Panel

Abstract

BackgroundWhile medical studies generally provide health feedback to participants, in observational studies this is not always the case due to logistical and financial difficulties, or concerns about changing observed behaviours. However, evidence suggests that lack of feedback may deter participants from providing biological samples. This paper investigates the effect of offering feedback of blood results on participation in biomeasure sample collection.MethodsParticipants aged 16 and over from a longitudinal study – the Understanding Society Innovation Panel—were randomised to three arms – nurse interviewer, interviewer, web survey – and invited to participate in biomeasures data collection. Within each arm they were randomised to receive feedback of their blood results or not. For those interviewed by a nurse both venous and dried blood samples (DBS) were taken in the interview. For the other two arms, they were asked if they would be willing to take a sample, and if they agreed a DBS kit was left or sent to them so the participant could take their own sample and return it. Blood samples were analysed and, if in the feedback arms, participants were sent their total cholesterol and HbA1c results.Response rates for feedback and non-feedback groups were compared: overall; in each arm of the study; by socio-demographic and health characteristics; and by previous study participation. Logistic regression models of providing a blood sample by feedback group and data collection approach controlling for confounders were calculated.ResultsOverall 2162 (80.3% of individuals in responding households) took part in the survey; of those 1053 (48.7%) consented to provide a blood sample. Being offered feedback had little effect on overall participation but did increase consent to provide a blood sample (unadjusted OR 1.38; CI: 1.16–1.64). Controlling for participant characteristics, the effect of feedback was highest among web participants (1.55; 1.11–2.17), followed by interview participants (1.35; 0.99 –1.84) and then nurse interview participants (1.30; 0.89–1.92).ConclusionsOffering feedback of blood results increased willingness to give samples, especially for those taking part in a web survey.