Practical matters, rather than lack of trust, motivate non-participation in a long-term cohort trial

Helgesson, Gert; Hansson, Mats; Ludvigsson, Johnny; Swartling, Ulrica

doi:10.1111/j.1399-5448.2008.00498.x

Cited by 20 publications

(22 citation statements)

References 12 publications

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“…These finding are consistent with prior reports identifying similar reasons for why families fail to join longitudinal studies like TEDDY [8,9]. It appears that even when families join a longitudinal study, protocol issues including blood draws and extensive time demands remain important for study retention.…”

Section: Discussionsupporting

confidence: 82%

“…Having someone who is watching the child for the development of diabetes and getting the child's antibody results were two of the most important reasons for staying in the TEDDY study, findings reported previously [7]. It is also important not to underestimate participants' altruistic objectives for participating in research [8]. In a phase III clinical trial [4], in addition to possible personal benefit, respondents often mentioned the possibility of helping others.…”

Section: Discussionmentioning

confidence: 95%

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Anti-Aging with High, Selective and Wide Spectrum Anticancer Activities of Jordanian Olive Trees Leaves Special Extracts

Abuismail¹

2012

JCST

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Section: Discussionsupporting

confidence: 82%

Section: Discussionmentioning

confidence: 95%

Anti-Aging with High, Selective and Wide Spectrum Anticancer Activities of Jordanian Olive Trees Leaves Special Extracts

Abuismail¹

2012

JCST

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“…The original consent was given at birth (1997–1999). At each clinical checkpoint, the parents were informed and given the opportunity to remain in or opt out 19. Information about the study’s aims was distributed to the families (sample at 1, 2.5, 5 and 8 years being the cohort who consented at birth; ie, 78.6% of the original birth cohort) by letters of information, brochures to the children (at 8 years) and through the ABIS website.…”

Section: The Abis Studymentioning

confidence: 99%

Split views among parents regarding children’s right to decide about participation in research: a questionnaire survey

et al. 2009

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Based on extensive questionnaire data, this paper focuses on parents' views about children's right to decide about participation in research. The data originates from 4000 families participating in a longitudinal prospective screening as 1997. Although current regulations and recommendations underline that children should have influence over their participation, many parents in this study disagree. Most (66%) were positive providing information to the child about relevant aspects of the study. However, responding parents were split about whether or not children should at some point be allowed decisional authority when participating in research: 41.6% of the parents reported being against or unsure. Those who responded positively believed that children should be allowed to decide about blood-sampling procedures (70%), but to a less extent about participation (48.5%), analyses of samples (19.7%) and biological bank storage (15.4%). That as many as possible should remain in the study, and that children do not have the competence to understand the consequences for research was strongly stressed by respondents who do not think children should have a right to decide. When asked what interests they consider most important in paediatric research, child autonomy and decision-making was ranked lowest. We discuss the implications of these findings.

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“…The All Babies in Southwest Sweden (ABIS) study, a longitudinal epidemiological study targeting children from birth, enrolled 78.6% of eligible participants and noted practical study characteristics such as participant time burden and blood sampling as the most common reasons for enrollment refusal. ABIS data also suggested interactions between participant characteristics (e.g., maternal age, parent education level) and reasons for enrollment refusal [4]. While these studies provide relevant information on enrollment experiences, there may be international differences in these experiences which are not captured by country-specific studies.…”

Section: Introductionmentioning

confidence: 99%

Enrollment experiences in a pediatric longitudinal observational study: The Environmental Determinants of Diabetes in the Young (TEDDY) study

Lernmark¹,

Johnson²,

Vehik³

et al. 2011

Contemporary Clinical Trials

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Objective Our objective was to identify characteristics of infants and their families who were enrolled, refused to enroll, or were excluded from The Environmental Determinants of Diabetes in the Young (TEDDY) study. Method 16,435 infants screened at birth and identified as at increased genetic risk for type 1 diabetes (T1DM) were placed into one of three categories: enrolled, excluded, or refused to enroll. Enrollment, exclusion and refusal rates were compared across countries and between infants from the general population (GP) and infants with a first degree T1DM relative (FDR). A multivariate logistic model was used to identify factors associated with TEDDY enrollment. Results TEDDY enrollment, exclusion, and refusal rates differed by country and by GP/FDR status but reasons for refusal to enroll were similar across countries and GP/FDR populations. Sweden had the highest enrollment rate, US had the highest exclusion rate, and Finland had the highest refusal rate. FDR infants were more likely to enroll than GP infants. Inability to re-contact the family was the most common reason for exclusion. Primary reasons for refusal to enroll included protocol factors (e.g. blood draws) or family factors (e.g., too busy). Study enrollment was associated with FDR status, European country of origin, older maternal age, a singleton birth, and having another child in TEDDY. Conclusions Findings highlight the importance of country specific estimates for enrollment targets in longitudinal pediatric studies and suggest that enrollment estimates should be lowered when the study involves the general population, painful procedures, or makes multiple demands on families.

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Practical matters, rather than lack of trust, motivate non-participation in a long-term cohort trial

Cited by 20 publications

References 12 publications

Anti-Aging with High, Selective and Wide Spectrum Anticancer Activities of Jordanian Olive Trees Leaves Special Extracts

Anti-Aging with High, Selective and Wide Spectrum Anticancer Activities of Jordanian Olive Trees Leaves Special Extracts

Split views among parents regarding children’s right to decide about participation in research: a questionnaire survey

Enrollment experiences in a pediatric longitudinal observational study: The Environmental Determinants of Diabetes in the Young (TEDDY) study

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