Participant characteristics and study features associated with high retention rates in a longitudinal investigation of type 1 diabetes mellitus

John R Kramer; Margaret L Bayless; Gayle M Lorenzi; Georgia K Ziegler; Mary E Larkin; Mary E Lackaye; Judith Harth; Lisa J Diminick; Karen L Anderson; Barbara H Braffett; Patricia A Cleary; DCCT/EDIC Study Group

doi:10.1177/1740774512458986

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Participant characteristics and study features associated with high retention rates in a longitudinal investigation of type 1 diabetes mellitus

Journal article

Peer reviewed

Participant characteristics and study features associated with high retention rates in a longitudinal investigation of type 1 diabetes mellitus

John R Kramer, Margaret L Bayless, Gayle M Lorenzi, Georgia K Ziegler, Mary E Larkin, Mary E Lackaye, Judith Harth, Lisa J Diminick, Karen L Anderson, Barbara H Braffett, …

Clinical trials (London, England), Vol.9(6), pp.798-805

12/2012

DOI: 10.1177/1740774512458986

PMCID: PMC3762976

PMID: 23027646

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https://www.ncbi.nlm.nih.gov/pmc/articles/3762976View

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Abstract

The Diabetes Control and Complications Trial/Epidemiology of Diabetes Interventions and Complications (DCCT/EDIC) Study has sustained an extraordinarily high level of participant involvement for over two decades. In order to identify specific characteristics of EDIC that contributed most strongly to retention, study-designed questionnaires were distributed to 1334 participants. Confidential questionnaires were completed during EDIC Years 15-17. Participants were classified as Completely Adherent (completed all visits), Partly Adherent (missed >1 visit or major portion of a visit), or Inactive (did not participate for >5 years). Questionnaire items addressed specific aspects of clinic visits, evaluation procedures, staff-participant relationships, and medical/health-care support provided by EDIC. The most commonly cited reasons for continuing participation were Cutting Edge Tests to assess diabetes complications (79.3%), Annual Evaluations (67.7%), a desire to Help Others (65.2%), and Better Care for Diabetes (61.6%). Women chose Cutting Edge Tests as their first or second most important reason significantly more often than men, whereas men chose Better Care for Diabetes more frequently. Individuals with at least three diabetes-related complications were more likely than those with fewer complications to choose Annual Evaluations as their first or second reason for continued involvement. The small proportion of individuals who discontinued participation restricted our ability to identify factors associated with suspended involvement. In addition, our analysis is limited to a cohort with type 1 diabetes followed in an observational study after an average participation time of 6.5 years in a randomized trial. The primary reasons identified by respondents for their long-term commitment are consistent with shorter-term studies and underscore the importance of expert medical care, supportive staff-participant relationships, and involvement with clinically and scientifically meaningful research.

Hypoglycemic Agents - therapeutic use

Multivariate Analysis

Drug Administration Schedule

Follow-Up Studies

Professional-Patient Relations

Humans

Middle Aged

Male

Diabetes Complications - diagnosis

Diabetes Mellitus, Type 1 - complications

Diabetes Mellitus, Type 1 - therapy

Diabetes Mellitus, Type 1 - drug therapy

Patient Compliance - statistics & numerical data

Young Adult

Analysis of Variance

Adolescent

Adult

Female

Surveys and Questionnaires

Patient Compliance - psychology

Drug Monitoring

Insulin - therapeutic use

Diabetes Complications - prevention & control

Details

Title: Subtitle: Participant characteristics and study features associated with high retention rates in a longitudinal investigation of type 1 diabetes mellitus
Creators: John R Kramer - Department of Psychiatry, University of Iowa Carver College of Medicine, Iowa City, 52242-1000, USA. john-kramer@uiowa.edu
Margaret L Bayless
Gayle M Lorenzi
Georgia K Ziegler
Mary E Larkin
Mary E Lackaye
Judith Harth
Lisa J Diminick
Karen L Anderson
Barbara H Braffett
Patricia A Cleary
DCCT/EDIC Study Group
Resource Type: Journal article
Publication Details: Clinical trials (London, England), Vol.9(6), pp.798-805
DOI: 10.1177/1740774512458986
PMID: 23027646
PMCID: PMC3762976
NLM abbreviation: Clin Trials
ISSN: 1740-7745
eISSN: 1740-7753
Publisher: England
Grant note: U01 DK094176 / NIDDK NIH HHS
Language: English
Date published: 12/2012
Academic Unit: Psychiatry
Record Identifier: 9983980083002771

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