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Converting from face-to-face to postal follow-up and its effects on participant retention, response rates and errors: lessons from the EQUAL study in the UK

Converting from face-to-face to postal follow-up and its effects on participant retention, response rates and errors: lessons from the EQUAL study in the UK
Converting from face-to-face to postal follow-up and its effects on participant retention, response rates and errors: lessons from the EQUAL study in the UK
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.
Chronic kidney disease, Errors, Follow-up, Prospective cohort study, Response rates, Retention
1471-2288
Gates, Emer
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Hole, Barnaby
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Hayward, Samantha
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Chesnaye, Nicholas C.
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Meuleman, Yvette
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Dekker, Friedo W.
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Evans, Marie
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Heimburger, Olof
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Torino, Claudia
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Porto, Gaetana
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Szymczak, Maciej
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Drechsler, Christiane
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Wanner, Christoph
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Jager, Kitty J.
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Roderick, Paul
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Caskey, Fergus
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for the EQUAL investigators
Gates, Emer
a03edf45-801f-47b4-a4e6-7dadcac15d2d
Hole, Barnaby
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Hayward, Samantha
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Chesnaye, Nicholas C.
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Meuleman, Yvette
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Dekker, Friedo W.
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Evans, Marie
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Heimburger, Olof
91567005-6e37-434b-86f5-bc0a5753bbfb
Torino, Claudia
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Porto, Gaetana
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Szymczak, Maciej
e73545da-18f1-4113-9ccf-007dea48d418
Drechsler, Christiane
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Wanner, Christoph
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Jager, Kitty J.
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Roderick, Paul
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Caskey, Fergus
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Gates, Emer, Hole, Barnaby, Hayward, Samantha, Chesnaye, Nicholas C., Meuleman, Yvette, Dekker, Friedo W., Evans, Marie, Heimburger, Olof, Torino, Claudia, Porto, Gaetana, Szymczak, Maciej, Drechsler, Christiane, Wanner, Christoph, Jager, Kitty J., Roderick, Paul and Caskey, Fergus , for the EQUAL investigators (2022) Converting from face-to-face to postal follow-up and its effects on participant retention, response rates and errors: lessons from the EQUAL study in the UK. BMC Medical Research Methodology, 22 (1), [44]. (doi:10.1186/s12874-021-01453-0).

Record type: Article

Abstract

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.

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Accepted/In Press date: 28 October 2021
Published date: 11 February 2022
Additional Information: 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). Copyright: Copyright 2022 Elsevier B.V., All rights reserved.
Keywords: Chronic kidney disease, Errors, Follow-up, Prospective cohort study, Response rates, Retention

Identifiers

Local EPrints ID: 456673
URI: http://eprints.soton.ac.uk/id/eprint/456673
ISSN: 1471-2288
PURE UUID: 02f807e7-26d9-4e67-b652-0d7930573dd9
ORCID for Paul Roderick: ORCID iD orcid.org/0000-0001-9475-6850

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Date deposited: 06 May 2022 16:30
Last modified: 18 Mar 2024 02:40

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Contributors

Author: Emer Gates
Author: Barnaby Hole
Author: Samantha Hayward
Author: Nicholas C. Chesnaye
Author: Yvette Meuleman
Author: Friedo W. Dekker
Author: Marie Evans
Author: Olof Heimburger
Author: Claudia Torino
Author: Gaetana Porto
Author: Maciej Szymczak
Author: Christiane Drechsler
Author: Christoph Wanner
Author: Kitty J. Jager
Author: Paul Roderick ORCID iD
Author: Fergus Caskey
Corporate Author: for the EQUAL investigators

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