TY - JOUR
T1 - Converting from face-to-face to postal follow-up and its effects on participant retention, response rates and errors
T2 - lessons from the EQUAL study in the UK
AU - Gates, Emer
AU - Hole, Barnaby
AU - Hayward, Samantha
AU - Chesnaye, Nicholas C.
AU - Meuleman, Yvette
AU - Dekker, Friedo W.
AU - Evans, Marie
AU - Heimburger, Olof
AU - Torino, Claudia
AU - Porto, Gaetana
AU - Szymczak, Maciej
AU - Drechsler, Christiane
AU - Wanner, Christoph
AU - Jager, Kitty J.
AU - EQUAL investigators
AU - Roderick, Paul
AU - Caskey, Fergus
N1 - Funding Information: Funding was received from the ERA-EDTA, the Swedish Medical Association, the Stockholm County Council ALF and CIMED, Njurfonden (Sweden), the Italian Society of Nephrology (SIN-Reni), the Dutch Kidney Foundation (SB 142), a Young Investigators grant in Germany and the National Institute for Health Research in the UK. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Funding Information: We would like to give special thanks to the EQUAL work group, and all patients and health professionals participating in the EQUAL study. EG was an academic foundation trainee in the University of Bristol during this research, and would also like to thank the team for their support. Publisher Copyright: © 2021, The Author(s).
PY - 2022/12
Y1 - 2022/12
N2 - BACKGROUND: Prospective cohort studies are challenging to deliver, with one of the main difficulties lying in retention of participants. The need to socially distance during the COVID-19 pandemic has added to this challenge. The pre-COVID-19 adaptation of the European Quality (EQUAL) study in the UK to a remote form of follow-up for efficiency provides lessons for those who are considering changing their study design. METHODS: The EQUAL study is an international prospective cohort study of patients ≥65 years of age with advanced chronic kidney disease. Initially, patients were invited to complete a questionnaire (SF-36, Dialysis Symptom Index and Renal Treatment Satisfaction Questionnaire) at research clinics every 3-6 months, known as "traditional follow-up" (TFU). In 2018, all living patients were invited to switch to "efficient follow-up" (EFU), which used an abbreviated questionnaire consisting of SF-12 and Dialysis Symptom Index. These were administered centrally by post. Response rates were calculated using returned questionnaires as a proportion of surviving invitees, and error rates presented as the average percentage of unanswered questions or unclear answers, of total questions in returned questionnaires. Response and error rates were calculated 6-monthly in TFU to allow comparisons with EFU. RESULTS: Of the 504 patients initially recruited, 236 were still alive at the time of conversion to EFU; 111 of these (47%) consented to the change in follow-up. In those who consented, median TFU was 34 months, ranging from 0 to 42 months. Their response rates fell steadily from 88% (98/111) at month 0 of TFU, to 20% (3/15) at month 42. The response rate for the first EFU questionnaire was 60% (59/99) of those alive from TFU. With this improvement in response rates, the first EFU also lowered errors to baseline levels seen in early follow-up, after having almost trebled throughout traditional follow-up. CONCLUSIONS: Overall, this study demonstrates that administration of shorter follow-up questionnaires by post rather than in person does not negatively impact patient response or error rates. These results may be reassuring for researchers who are trying to limit face-to-face contact with patients during the COVID-19 pandemic.
AB - BACKGROUND: Prospective cohort studies are challenging to deliver, with one of the main difficulties lying in retention of participants. The need to socially distance during the COVID-19 pandemic has added to this challenge. The pre-COVID-19 adaptation of the European Quality (EQUAL) study in the UK to a remote form of follow-up for efficiency provides lessons for those who are considering changing their study design. METHODS: The EQUAL study is an international prospective cohort study of patients ≥65 years of age with advanced chronic kidney disease. Initially, patients were invited to complete a questionnaire (SF-36, Dialysis Symptom Index and Renal Treatment Satisfaction Questionnaire) at research clinics every 3-6 months, known as "traditional follow-up" (TFU). In 2018, all living patients were invited to switch to "efficient follow-up" (EFU), which used an abbreviated questionnaire consisting of SF-12 and Dialysis Symptom Index. These were administered centrally by post. Response rates were calculated using returned questionnaires as a proportion of surviving invitees, and error rates presented as the average percentage of unanswered questions or unclear answers, of total questions in returned questionnaires. Response and error rates were calculated 6-monthly in TFU to allow comparisons with EFU. RESULTS: Of the 504 patients initially recruited, 236 were still alive at the time of conversion to EFU; 111 of these (47%) consented to the change in follow-up. In those who consented, median TFU was 34 months, ranging from 0 to 42 months. Their response rates fell steadily from 88% (98/111) at month 0 of TFU, to 20% (3/15) at month 42. The response rate for the first EFU questionnaire was 60% (59/99) of those alive from TFU. With this improvement in response rates, the first EFU also lowered errors to baseline levels seen in early follow-up, after having almost trebled throughout traditional follow-up. CONCLUSIONS: Overall, this study demonstrates that administration of shorter follow-up questionnaires by post rather than in person does not negatively impact patient response or error rates. These results may be reassuring for researchers who are trying to limit face-to-face contact with patients during the COVID-19 pandemic.
KW - Chronic kidney disease
KW - Errors
KW - Follow-up
KW - Prospective cohort study
KW - Response rates
KW - Retention
UR - http://www.scopus.com/inward/record.url?scp=85124501040&partnerID=8YFLogxK
U2 - https://doi.org/10.1186/s12874-021-01453-0
DO - https://doi.org/10.1186/s12874-021-01453-0
M3 - Article
C2 - 35148682
SN - 1471-2288
VL - 22
SP - 44
JO - BMC medical research methodology
JF - BMC medical research methodology
IS - 1
M1 - 44
ER -