Is staff consistency important to parents’ satisfaction in a longitudinal study of children at risk for type 1 diabetes: the TEDDY study
Authors: Melin Jessica , Lynch Kristian F. , Lundgren Markus , Aronsson Carin Andrén , Larsson Helena Elding , Johnson Suzanne Bennett ,   TEDDY Study Group, Rewers Marian , Barbour Aaron , Bautista Kimberly , Baxter Judith , Felipe-Morales Daniel , Frohnert Brigitte I. , Stahl Marisa , Gesualdo Patricia , Haley Rachel , Hoffman Michelle , Karban Rachel , Liu Edwin , Munoz Alondra , Norris Jill , Peacock Stesha , Shorrosh Hanan , Steck Andrea , Stern Megan , Waugh Kathleen , Toppari Jorma , Simell Olli G. , Adamsson Annika , Aaltonen Sanna-Mari , Ahonen Suvi , Åkerlund Mari , Hakola Leena , Hekkala Anne , Holappa Henna , Hyöty Heikki , Ikonen Anni , Ilonen Jorma , Jokipuu Sanna , Karlsson Leena , Kähönen Jukka Kero Miia , Knip Mikael , Koivikko Minna-Liisa , Kokkonen Katja , Koskinen Merja , Koreasalo Mirva , Kurppa Kalle , Kuusela Salla , Kytölä Jarita , Lahtinen Sinikka , Laiho Jutta , Latva-aho Tiina , Leppänen Laura , Lindfors Katri , Lönnrot Maria , Mäntymäki Elina , Mattila Markus , Miettinen Maija , Multasuo Katja , Mykkänen Teija , Niininen Tiina , Nyblom Sari Niinistö Mia , Oikarinen Sami , Ollikainen Paula , Othmani Zhian , Pohjola Sirpa , Rautanen Jenna , Riikonen Anne , Romo Minna , Simell Satu , Stenius Aino , Tossavainen Päivi , Vähä-Mäkilä Mari , Varjonen Eeva , Veijola Riitta , Viinikangas Irene , Virtanen Suvi M. , She Jin-Xiong , Schatz Desmond , Hopkins Diane , Steed Leigh , Bryant Jennifer , Silvis Katherine , Haller Michael , Gardiner Melissa , McIndoe Richard , Sharma Ashok , Anderson Stephen W. , Jacobsen Laura , Marks John , Ziegler Anette G. , Bonifacio Ezio , Gezginci Cigdem , Heublein Anja , Hohoff Eva , Hummel Sandra , Knopff Annette , Koch Charlotte , Koletzko Sibylle , Ramminger Claudia , Roth Roswith , Schmidt Jennifer , Scholz Marlon , Stock Joanna , Warncke Katharina , Wendel Lorena , Winkler Christiane , München Helmholtz Zentrum , Diabetes Forschergruppe , Lernmark Åke , Agardh Daniel , Aronsson Carin Andrén , Ask Maria , Bennet Rasmus , Cilio Corrado , Dahlberg Susanne , Tsubarah Malin Goldman , Ericson-Hallström Emelie , Fors Annika Björne , Fransson Lina , Gard Thomas , Hansen Monika , Hyberg Susanne , Jonsdottir Berglind , Larsson Helena Elding , Lindström Marielle , Lundgren Markus , Maziarz Marlena , Martinez Maria Månsson , Melin Jessica , Mestan Zeliha , Nilsson Caroline , Nordh Yohanna , Rahmati Kobra , Ramelius Anita , Salami Falastin , Sjöberg Anette , Törn Carina , Hagopian William A. , Killian Michael , Crouch Claire Cowen , Skidmore Jennifer , Chamberlain Christian , Fairman Brelon , Meyer Arlene , Meyer Jocelyn , Mulenga Denise , Powell Nole , Radtke Jared , Roy Shreya , Schmitt Davey , Zink Sarah , Becker Dorothy , Franciscus Margaret , Smith Mary Ellen Dalmagro-Elias , Daftary Ashi , Klein Mary Beth , Yates Chrystal , Krischer Jeffrey P. , Adusumali Rajesh , Austin-Gonzalez Sarah , Avendano Maryouri , Baethke Sandra , Burkhardt Brant , Butterworth Martha , Cadigan Nicholas , Clasen Joanna , Counts Kevin , Eberhard Christopher , Fiske Steven , Gandolfo Laura , Garmeson Jennifer , Gowda Veena , Hsiao Belinda , Karges Christina , Li Qian , Liu Shu , Liu Xiang , Lynch Kristian , Malloy Jamie , McCarthy Cristina , Moreno Jose , Parikh Hemang M. , Remedios Cassandra , Shaffer Chris , Smith Susan , Sulman Noah , Tamura Roy , Tewey Dena , Toth Michael , Uusitalo Ulla , Vehik Kendra , Vijayakandipan Ponni , Wroble Melissa , Yang Jimin , Young Kenneth , Abbondondolo Michael , Ballard Lori , Brown Rasheedah , Cuthbertson David , Dankyi Stephen , Hadley David , Heyman Kathleen , Laras Francisco Perez , Lee Hye-Seung , Maguire Colleen , McLeod Wendy , Merrell Aubrie , Meulemans Steven , Quigley Ryan , Smith Laura , Akolkar Beena , Briese Thomas , Brusko Todd , Johnson Bennett , McKinney Eoin , Pastinen Tomi 
Published: January 2022

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.