TY - JOUR
T1 - Challenges in conducting multicentre, multidisciplinary, longitudinal studies in children with chronic conditions
AU - Broder, Hillary L.
AU - Crerand, Canice E.
AU - Ruff, Ryan R.
AU - Peshansky, Alexandre
AU - Sarwer, David B.
AU - Sischo, Lacey
N1 - Publisher Copyright:
© 2017 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
PY - 2017/8/1
Y1 - 2017/8/1
N2 - Objectives: Conducting longitudinal, multicentre, multidisciplinary research for individuals with chronic conditions can be challenging. Despite careful planning, investigative teams must adapt to foreseen and unforeseen problems. Our objective is to identify challenges encountered and solutions sought in a recently completed observational, longitudinal study of youth with cleft lip and palate as well as their caregivers. Methods: Data for analysis were derived from a 6-year, multicentre, prospective, longitudinal study of youth with cleft conducted from 2009 to 2015 that examined oral health-related quality of life and other related clinical observations over time in youth who had cleft-related surgery compared to those who did not. Youth and their caregivers participating in this study were followed at one of six geographically diverse, multidisciplinary cleft treatment centres in the USA. Results: Establishing effective communication, ensuring protocol adherence, safeguarding data quality, recognizing and managing differences across sites, maximizing participant retention, dealing with study personnel turnover, and balancing/addressing clinical and research tasks were particularly exigent issues that arose over the course of the study. Attending to process, ongoing communication within and across sites, and investigator and clinician commitment and flexibility were required to achieve the stated aims of the research. Conclusion: Studying children with cleft and their caregivers over time created both foreseen and unforeseen challenges. Solutions to these challenges are presented to aid in the design of future longitudinal research in individuals with chronic conditions.
AB - Objectives: Conducting longitudinal, multicentre, multidisciplinary research for individuals with chronic conditions can be challenging. Despite careful planning, investigative teams must adapt to foreseen and unforeseen problems. Our objective is to identify challenges encountered and solutions sought in a recently completed observational, longitudinal study of youth with cleft lip and palate as well as their caregivers. Methods: Data for analysis were derived from a 6-year, multicentre, prospective, longitudinal study of youth with cleft conducted from 2009 to 2015 that examined oral health-related quality of life and other related clinical observations over time in youth who had cleft-related surgery compared to those who did not. Youth and their caregivers participating in this study were followed at one of six geographically diverse, multidisciplinary cleft treatment centres in the USA. Results: Establishing effective communication, ensuring protocol adherence, safeguarding data quality, recognizing and managing differences across sites, maximizing participant retention, dealing with study personnel turnover, and balancing/addressing clinical and research tasks were particularly exigent issues that arose over the course of the study. Attending to process, ongoing communication within and across sites, and investigator and clinician commitment and flexibility were required to achieve the stated aims of the research. Conclusion: Studying children with cleft and their caregivers over time created both foreseen and unforeseen challenges. Solutions to these challenges are presented to aid in the design of future longitudinal research in individuals with chronic conditions.
KW - clinical research
KW - craniofacial anomalies
KW - quality of life
KW - study design
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U2 - 10.1111/cdoe.12293
DO - 10.1111/cdoe.12293
M3 - Article
C2 - 28220515
AN - SCOPUS:85013360353
VL - 45
SP - 317
EP - 322
JO - Community Dentistry and Oral Epidemiology
JF - Community Dentistry and Oral Epidemiology
SN - 0301-5661
IS - 4
ER -