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.

Chronic kidney disease Errors Follow-up Prospective cohort study Response rates Retention

Journal

BMC medical research methodology
ISSN: 1471-2288
Titre abrégé: BMC Med Res Methodol
Pays: England
ID NLM: 100968545

Informations de publication

Date de publication:
11 02 2022
Historique:
received: 26 01 2021
accepted: 28 10 2021
entrez: 12 2 2022
pubmed: 13 2 2022
medline: 19 2 2022
Statut: epublish

Résumé

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. 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. 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. 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.

Sections du résumé

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.

Identifiants

pubmed: 35148682
doi: 10.1186/s12874-021-01453-0
pii: 10.1186/s12874-021-01453-0
pmc: PMC8832416
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

44

Informations de copyright

© 2021. The Author(s).

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Auteurs

Emer Gates (E)

Centre for Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK. emer.gates@nbt.nhs.uk.
Southmead Hospital, North Bristol NHS Trust, Bristol, UK. emer.gates@nbt.nhs.uk.

Barnaby Hole (B)

Centre for Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
Southmead Hospital, North Bristol NHS Trust, Bristol, UK.
UK Renal Registry, Southmead Hospital, Bristol, UK.

Samantha Hayward (S)

Centre for Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
Southmead Hospital, North Bristol NHS Trust, Bristol, UK.
UK Renal Registry, Southmead Hospital, Bristol, UK.

Nicholas C Chesnaye (NC)

ERA-EDTA Registry, Department of Medical Informatics, Academic Medical Center, University of Amsterdam, Amsterdam Public Health Research Institute, Amsterdam, The Netherlands.

Yvette Meuleman (Y)

Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.

Friedo W Dekker (FW)

Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.

Marie Evans (M)

Renal Unit, Department of Clinical Intervention and technology (CLINTEC), Karolinska Institutet and Karolinska University Hospital, Stockholm, Sweden.

Olof Heimburger (O)

Renal Unit, Department of Clinical Intervention and technology (CLINTEC), Karolinska Institutet and Karolinska University Hospital, Stockholm, Sweden.

Claudia Torino (C)

Institute of Clinical Physiology, National Research Council, Reggio Calabria, Italy.

Gaetana Porto (G)

GOM Bianchi Melacrino Morelli, Reggio Calabria, Italy.

Maciej Szymczak (M)

Department of Nephrology and Transplantation Medicine, Wroclaw Medical University, Wroclaw, Poland.

Christiane Drechsler (C)

Division of Nephrology, University Hospital of Wurzburg, Wurzburg, Germany.

Christoph Wanner (C)

Division of Nephrology, University Hospital of Wurzburg, Wurzburg, Germany.

Kitty J Jager (KJ)

ERA-EDTA Registry, Department of Medical Informatics, Academic Medical Center, University of Amsterdam, Amsterdam Public Health Research Institute, Amsterdam, The Netherlands.

Paul Roderick (P)

School of Primary Care Population Sciences and Medical Education, Faculty of Medicine, University of Southampton, Southampton, UK.

Fergus Caskey (F)

Centre for Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
Southmead Hospital, North Bristol NHS Trust, Bristol, UK.

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