TY - JOUR
T1 - Is staff consistency important to parents’ satisfaction in a longitudinal study of children at risk for type 1 diabetes
T2 - the TEDDY study
AU - TEDDY study group
AU - Melin, Jessica
AU - Lynch, Kristian F.
AU - Lundgren, Markus
AU - Aronsson, Carin Andrén
AU - Larsson, Helena Elding
AU - Johnson, Suzanne Bennett
AU - Rewers, Marian
AU - Barbour, Aaron
AU - Bautista, Kimberly
AU - Baxter, Judith
AU - Felipe-Morales, Daniel
AU - Frohnert, Brigitte I.
AU - Stahl, Marisa
AU - Gesualdo, Patricia
AU - Haley, Rachel
AU - Hoffman, Michelle
AU - Karban, Rachel
AU - Liu, Edwin
AU - Munoz, Alondra
AU - Norris, Jill
AU - Peacock, Stesha
AU - Shorrosh, Hanan
AU - Steck, Andrea
AU - Stern, Megan
AU - Waugh, Kathleen
AU - Toppari, Jorma
AU - Simell, Olli G.
AU - Adamsson, Annika
AU - Aaltonen, Sanna Mari
AU - Ahonen, Suvi
AU - Åkerlund, Mari
AU - Hakola, Leena
AU - Hekkala, Anne
AU - Holappa, Henna
AU - Hyöty, Heikki
AU - Ikonen, Anni
AU - Ilonen, Jorma
AU - Jokipuu, Sanna
AU - Karlsson, Leena
AU - Kähönen, Jukka Kero Miia
AU - Knip, Mikael
AU - Koivikko, Minna Liisa
AU - Kokkonen, Katja
AU - Koskinen, Merja
AU - Koreasalo, Mirva
AU - Kurppa, Kalle
AU - Kuusela, Salla
AU - Kytölä, Jarita
AU - McIndoe, Richard
AU - Sharma, Ashok
N1 - Publisher Copyright:
© 2022, The Author(s).
PY - 2022/12
Y1 - 2022/12
N2 - Background: Participants’ study satisfaction is important for both compliance with study protocols and retention, but research on parent study satisfaction is rare. This study sought to identify factors associated with parent study satisfaction in The Environmental Determinants of Diabetes in the Young (TEDDY) study, a longitudinal, multinational (US, Finland, Germany, Sweden) study of children at risk for type 1 diabetes. The role of staff consistency to parent study satisfaction was a particular focus. Methods: Parent study satisfaction was measured by questionnaire at child-age 15 months (5579 mothers, 4942 fathers) and child-age four years (4010 mothers, 3411 fathers). Multiple linear regression analyses were used to identify sociodemographic factors, parental characteristics, and study variables associated with parent study satisfaction at both time points. Results: Parent study satisfaction was highest in Sweden and the US, compared to Finland. Parents who had an accurate perception of their child’s type 1 diabetes risk and those who believed they can do something to prevent type 1 diabetes were more satisfied. More educated parents and those with higher depression scores had lower study satisfaction scores. After adjusting for these factors, greater study staff change frequency was associated with lower study satisfaction in European parents (mothers at child-age 15 months: − 0.30,95% Cl − 0.36, − 0.24, p < 0.001; mothers at child-age four years: -0.41, 95% Cl − 0.53, − 0.29, p < 0.001; fathers at child-age 15 months: -0.28, 95% Cl − 0.34, − 0.21, p < 0.001; fathers at child-age four years: -0.35, 95% Cl − 0.48, − 0.21, p < 0.001). Staff consistency was not associated with parent study satisfaction in the US. However, the number of staff changes was markedly higher in the US compared to Europe. Conclusions: Sociodemographic factors, parental characteristics, and study-related variables were all related to parent study satisfaction. Those that are potentially modifiable are of particular interest as possible targets of future efforts to improve parent study satisfaction. Three such factors were identified: parent accuracy about the child’s type 1 diabetes risk, parent beliefs that something can be done to reduce the child’s risk, and study staff consistency. However, staff consistency was important only for European parents. Trial registration: NCT00279318.
AB - Background: Participants’ study satisfaction is important for both compliance with study protocols and retention, but research on parent study satisfaction is rare. This study sought to identify factors associated with parent study satisfaction in The Environmental Determinants of Diabetes in the Young (TEDDY) study, a longitudinal, multinational (US, Finland, Germany, Sweden) study of children at risk for type 1 diabetes. The role of staff consistency to parent study satisfaction was a particular focus. Methods: Parent study satisfaction was measured by questionnaire at child-age 15 months (5579 mothers, 4942 fathers) and child-age four years (4010 mothers, 3411 fathers). Multiple linear regression analyses were used to identify sociodemographic factors, parental characteristics, and study variables associated with parent study satisfaction at both time points. Results: Parent study satisfaction was highest in Sweden and the US, compared to Finland. Parents who had an accurate perception of their child’s type 1 diabetes risk and those who believed they can do something to prevent type 1 diabetes were more satisfied. More educated parents and those with higher depression scores had lower study satisfaction scores. After adjusting for these factors, greater study staff change frequency was associated with lower study satisfaction in European parents (mothers at child-age 15 months: − 0.30,95% Cl − 0.36, − 0.24, p < 0.001; mothers at child-age four years: -0.41, 95% Cl − 0.53, − 0.29, p < 0.001; fathers at child-age 15 months: -0.28, 95% Cl − 0.34, − 0.21, p < 0.001; fathers at child-age four years: -0.35, 95% Cl − 0.48, − 0.21, p < 0.001). Staff consistency was not associated with parent study satisfaction in the US. However, the number of staff changes was markedly higher in the US compared to Europe. Conclusions: Sociodemographic factors, parental characteristics, and study-related variables were all related to parent study satisfaction. Those that are potentially modifiable are of particular interest as possible targets of future efforts to improve parent study satisfaction. Three such factors were identified: parent accuracy about the child’s type 1 diabetes risk, parent beliefs that something can be done to reduce the child’s risk, and study staff consistency. However, staff consistency was important only for European parents. Trial registration: NCT00279318.
KW - Child
KW - Genetic risk
KW - Longitudinal study
KW - Parent satisfaction
KW - Staff consistency
KW - Study satisfaction
KW - Type 1 diabetes
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UR - http://www.scopus.com/inward/citedby.url?scp=85123460309&partnerID=8YFLogxK
U2 - 10.1186/s12902-021-00929-w
DO - 10.1186/s12902-021-00929-w
M3 - Article
C2 - 35012530
AN - SCOPUS:85123460309
SN - 1472-6823
VL - 22
JO - BMC Endocrine Disorders
JF - BMC Endocrine Disorders
IS - 1
M1 - 19
ER -