Adherence to oral glucose tolerance testing in children in stage 1 of type 1 diabetes: The
            <scp>TEDDY</scp>
            study

Driscoll, Kimberly A.; Tamura, Roy; Johnson, Suzanne Bennett; Gesualdo, Patricia; Clasen, Joanna; Smith, Laura; Jacobsen, Laura M.; Larsson, Helena Elding

doi:10.1111/pedi.13149

Cited by 16 publications

(10 citation statements)

References 28 publications

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“…As a consequence, intervention trials may identify different factors associated with parental study satisfaction. However, the association of parent study satisfaction to both study retention and compliance [ 14 , 15 , 19 , 20 ], suggests that the identification of factors associated with parent study satisfaction is important to the design of pediatric research studies. This study has numerous strengths in this regard, including a large sample size from four different countries, assessment of both mothers’ and fathers’ study satisfaction across long periods of time, use of a reliable measure of study satisfaction, and a comprehensive analysis of multiple factors for possible association with parental study satisfaction.…”

Section: Discussionmentioning

confidence: 99%

“…The Environmental Determinants of Diabetes in the Young (TEDDY) study was designed to identify environmental triggers of type 1 diabetes in genetically at-risk children from birth to 15 years of age. Using the DPT-1 methodology, TEDDY monitors parent study satisfaction on an ongoing basis and has found it to be associated with both study retention [ 14 ] and adherence with OGTT assessments [ 15 ], but not food record compliance [ 16 ].…”

Section: Introductionmentioning

confidence: 99%

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Is staff consistency important to parents’ satisfaction in a longitudinal study of children at risk for type 1 diabetes: the TEDDY study

et al. 2022

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Is staff consistency important to parents’ satisfaction in a longitudinal study of children at risk for type 1 diabetes: the TEDDY study

et al. 2022

Self Cite

View full text Add to dashboard Cite

show abstract

“…As a consequence, intervention trials may identify different factors associated with parent study satisfaction. However, the association of parent study satisfaction to both study retention and compliance (14,15,19,20), suggests that the identi cation of factors associated with parent study satisfaction is important to the design of pediatric research studies. This study has numerous strengths in this regard: a large sample size from four different countries; assessment of both mothers' and fathers' study satisfaction across long periods of time; use of a reliable measure of study satisfaction, and a comprehensive analysis of multiple factors for possible association with parent study satisfaction.…”

Section: Discussionmentioning

confidence: 99%

“…Since study retention and compliance are associated with parents study satisfaction (14,15,19,20), identifying factors associated with parent study satisfaction is important to the design of pediatric research studies. Factors that are potentially modi able are particularly important.…”

Section: Discussionmentioning

confidence: 99%

“…The Environmental Determinants of Diabetes in the Young (TEDDY) study seeks to identify environmental triggers of type 1 diabetes in genetically at-risk children from birth to 15 years of age. Using the DPT-1 methodology, TEDDY monitors parent study satisfaction on an ongoing basis and has found it to be associated with both study retention (14) and adherence with OGTT assessments (15) but not food record compliance (16).…”

Section: Introductionmentioning

confidence: 99%

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Is Staff Consistency Important to Parents’ Satisfaction in a Longitudinal Study of Children at Risk for Type 1 Diabetes: The TEDDY Study

Melin

Lynch

Lundgren

et al. 2021

Preprint

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Background: Participants’ study satisfaction is important for both study compliance and retention, but research on parental study satisfaction is rare. The aim of the study was to identify factors associated with parent study satisfaction in a longitudinal, multinational study of children at risk for type 1 diabetes, with a particular focus on the role of staff consistency.Methods: Mother and father study satisfaction was measured at child-age 15 months (5579 mothers and 4942 fathers) and child-age four years (4010 mothers and 3411 fathers). Multiple linear regression analyses were used to identify factors associated with study satisfaction at both time points.Results: Parent study satisfaction was highest in Sweden and the US compared to Finland. Parents with low education who had an accurate perception of their child’s type 1 diabetes risk and who believed they can do something to prevent type 1 diabetes were more satisfied with their study participation. Parents with higher depression scores had lower study satisfactions scores. After adjusting for these factors, study staff consistency was associated with greater study satisfaction in Europe but not the US. However, the number of staff changes from visit to visit was markedly higher in the US compared to Europe. Although study satisfaction scores were higher for mothers than fathers, associations with other factors were similar for both.Conclusions: Factors associated with parent study satisfaction were similar for mothers and fathers and across time. Potentially modifiable factors are of particular interest. These include accuracy about the child’s risk for type 1 diabetes; beliefs that something can be done to reduce the child’s risk; and study staff consistency. However, the importance of staff consistency was different between the US and European parents. Trial registration: NCT00279318

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Consensus guidance for monitoring individuals with islet autoantibody-positive pre-stage 3 type 1 diabetes

Phillip,

Achenbach,

Addala

et al. 2024

Diabetologia

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Given the proven benefits of screening to reduce diabetic ketoacidosis (DKA) likelihood at the time of stage 3 type 1 diabetes diagnosis, and emerging availability of therapy to delay disease progression, type 1 diabetes screening programmes are being increasingly emphasised. Once broadly implemented, screening initiatives will identify significant numbers of islet autoantibody-positive (IAb+) children and adults who are at risk of (confirmed single IAb+) or living with (multiple IAb+) early-stage (stage 1 and stage 2) type 1 diabetes. These individuals will need monitoring for disease progression; much of this care will happen in non-specialised settings. To inform this monitoring, JDRF in conjunction with international experts and societies developed consensus guidance. Broad advice from this guidance includes the following: (1) partnerships should be fostered between endocrinologists and primary-care providers to care for people who are IAb+; (2) when people who are IAb+ are initially identified there is a need for confirmation using a second sample; (3) single IAb+ individuals are at lower risk of progression than multiple IAb+ individuals; (4) individuals with early-stage type 1 diabetes should have periodic medical monitoring, including regular assessments of glucose levels, regular education about symptoms of diabetes and DKA, and psychosocial support; (5) interested people with stage 2 type 1 diabetes should be offered trial participation or approved therapies; and (6) all health professionals involved in monitoring and care of individuals with type 1 diabetes have a responsibility to provide education. The guidance also emphasises significant unmet needs for further research on early-stage type 1 diabetes to increase the rigour of future recommendations and inform clinical care. Graphical Abstract

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Adherence to oral glucose tolerance testing in children in stage 1 of type 1 diabetes: The TEDDY study

Cited by 16 publications

References 28 publications

Is staff consistency important to parents’ satisfaction in a longitudinal study of children at risk for type 1 diabetes: the TEDDY study

Is staff consistency important to parents’ satisfaction in a longitudinal study of children at risk for type 1 diabetes: the TEDDY study

Is Staff Consistency Important to Parents’ Satisfaction in a Longitudinal Study of Children at Risk for Type 1 Diabetes: The TEDDY Study

Consensus guidance for monitoring individuals with islet autoantibody-positive pre-stage 3 type 1 diabetes

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