Parent Preferences for Delaying Insulin Dependence in Children at Risk of Stage III Type 1 Diabetes

DiSantostefano, Rachael L.; Sutphin, Jessie; Hedrick, Joseph A.; Klein, Kathleen; Mansfield, Carol

doi:10.1089/dia.2019.0444

Cited by 3 publications

(5 citation statements)

References 27 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The duration of benefit for a disease-modifying therapy and side effects were combined in one attribute, limiting insights from this study into how respondents might trade off duration of benefit and side effects. However, in a DCE survey conducted by DiSantostefano et al ( 35 ) among parents to elicit preferences for treatments to delay insulin dependence in children, duration of benefit, risk of serious infection, and chance of nausea were included. The results of that study demonstrated parents’ risk tolerance for treatments to delay insulin dependence and acceptable trade-offs between duration of benefit and side effects.…”

Section: Discussionmentioning

confidence: 99%

Parent and Pediatrician Preferences for Type 1 Diabetes Screening in the U.S.

Dunne¹,

Koralova

Sutphin

et al. 2020

Diabetes Care

Self Cite

View full text Add to dashboard Cite

OBJECTIVE The purpose of this study was to use a discrete-choice experiment methodology to understand the relative importance of the attributes of screening tests for type 1 diabetes among parents and pediatricians in the U.S. RESEARCH DESIGN AND METHODS Online surveys presented hypothetical screening test profiles from which respondents chose their preferred test profile. Survey attributes were based on likely screening test options and included the mode of administration, where and when the test was conducted, the type of education and monitoring available to lower the risk of diabetic ketoacidosis (DKA), and whether a treatment was available that would delay onset of insulin dependence. Data were analyzed using random-parameters logit models. RESULTS Parents placed the highest relative importance on monitoring programs that could reduce the risk of DKA to 1%, followed by treatment to delay onset of insulin dependence by 1 or 2 years, and, finally, avoiding a $50 out-of-pocket cost. Pediatricians placed equal importance on monitoring programs that reduced a patient’s risk of DKA to 1% and on avoiding a $50 out-of-pocket cost for the screening test, followed by the option of a treatment to delay the onset of insulin dependence. The mode of administration and location and timing of the screening were much less important to parents and pediatricians. CONCLUSIONS Parents and pediatricians preferred screening tests that were accompanied by education and monitoring plans to reduce the risk of DKA, had available treatment to delay type 1 diabetes, and had lower out-of-pocket costs.

show abstract

Section: Discussionmentioning

confidence: 99%

Parent and Pediatrician Preferences for Type 1 Diabetes Screening in the U.S.

Dunne¹,

Koralova

Sutphin

et al. 2020

Diabetes Care

Self Cite

View full text Add to dashboard Cite

show abstract

“…The study sample included 1501 parents: 600 who had a child with T1D and 901 who did not. The mean age was 40 years, 64% were female, and approximately 55% had a 4-year college degree or more (see DiSantostefano et al 21 for more details on the sample).…”

Section: Resultsmentioning

confidence: 99%

“…A DCE was administered online to 1501 adult parents in the United States with children currently under the age of 18 years. The DCE aimed to elicit the parents’ preferences for treatments that delayed the onset of T1D in children who had tested positive for the autoantibodies associated with T1D (see DiSantostefano et al 21 for study details). Respondents chose between two hypothetical interception treatments or an opt out (monitoring only, no treatment) in a series of experimentally designed choice questions.…”

Section: Methodsmentioning

confidence: 99%

Exploring Decisional Conflict With Measures of Numeracy and Optimism in a Stated Preference Survey

Sutphin

DiSantostefano

Leach

et al. 2021

MDM Policy & Practice

Self Cite

View full text Add to dashboard Cite

Objectives Low optimism and low numeracy are associated with difficulty or lack of participation in making treatment-related health care decisions. We investigated whether low optimism and low self-reported numeracy scores could help uncover evidence of decisional conflict in a discrete-choice experiment (DCE). Methods Preferences for a treatment to delay type 1 diabetes were elicited using a DCE among 1501 parents in the United States. Respondents chose between two hypothetical treatments or they could choose no treatment (opt out) in a series of choice questions. The survey included a measure of optimism and a measure of subjective numeracy. We used latent class analyses where membership probability was predicted by optimism and numeracy scores. Results Respondents with lower optimism scores had a higher probability of membership in a class with disordered preferences ( P value for optimism coefficient = 0.032). Those with lower self-reported numeracy scores were more likely to be in a class with a strong preference for opting out and disordered preferences ( P = 0.000) or a class with a preference for opting out and avoiding serious treatment-related risks ( P = 0.015). Conclusions If respondents with lower optimism and numeracy scores are more likely to choose to opt out or have disordered preferences in a DCE, it may indicate that they have difficulty completing choice tasks.

show abstract

“…Preventive treatment preference studies in at-risk and general public samples have been conducted in other disease areas including genetic testing for colorectal cancer screening and delaying onset of type 1 diabetes mellitus in children. 13 , 45 Generally, studies suggest that efficacy is the most important attribute across samples and that the ranks of the most and least important attributes are similar across groups; however, the relative weights, MAR, and predicted uptake could be quite different across at-risk and general public samples. For example, in colorectal cancer screening, the relative importance weights differed between the screened population compared with the general population.…”

Section: Discussionmentioning

confidence: 99%

“… 13 In a study of treatment delaying the onset of type 1 diabetes mellitus, the MAR were higher among children of parents whose children had type 1 diabetes mellitus versus those who did not have a child with type 1 diabetes. 45 Also, psychological distance (e.g., perceived risk of getting the condition, experience with the condition) strongly influenced preferences. 13 More research is needed to compare preferences, engagement, and quality of data from different at-risk populations (general public v. individuals at higher risk) in the disease prevention context for RA and other conditions.…”

Section: Discussionmentioning

confidence: 99%

Can the General Public Be a Proxy for an “At-Risk” Group in a Patient Preference Study? A Disease Prevention Example in Rheumatoid Arthritis

DiSantostefano,

Simons,

Englbrecht

et al. 2024

Med Decis Making

View full text Add to dashboard Cite

Background When selecting samples for patient preference studies, it may be difficult or impractical to recruit participants who are eligible for a particular treatment decision. However, a general public sample may not be an appropriate proxy. Objective This study compares preferences for rheumatoid arthritis (RA) preventive treatments between members of the general public and first-degree relatives (FDRs) of confirmed RA patients to assess whether a sample of the general public can be used as a proxy for FDRs. Methods Participants were asked to imagine they were experiencing arthralgia and had screening tests indicating a 60% chance of developing RA within 2 yrs. Using a discrete choice experiment, participants were offered a series of choices between no treatment and 2 unlabeled hypothetical treatments to reduce the risk of RA. To assess data quality, time to complete survey sections and comprehension questions were assessed. A random parameter logit model was used to obtain attribute-level estimates, which were used to calculate relative importance, maximum acceptable risk (MAR), and market shares of hypothetical preventive treatments. Results The FDR sample ( n = 298) spent more time completing the survey and performed better on comprehension questions compared with the general public sample ( n = 982). The relative importance ranking was similar between the general public and FDR participant samples; however, other relative preference measures involving weights including MARs and market share differed between groups, with FDRs having numerically higher MARs. Conclusion In the context of RA prevention, the general public (average risk) may be a reasonable proxy for a more at-risk sample (FDRs) for overall relative importance ranking but not weights. The rationale for a proxy sample should be clearly justified. Highlights Participants from the general public were compared to first-degree relatives on their preferences for rheumatoid arthritis (RA) preventive treatments using a discrete choice experiment. Preferences were similar between groups in terms of the most important and least important attributes of preventive treatments, with effectiveness being the most important attribute. However, relative weights differed. Attention to the survey and predicted market shares of hypothetical RA preventive treatments differed between the general public and first-degree relatives. The general public may be a reasonable proxy for an at-risk group for patient preferences ranks but not weights in the disease prevention context; however, care should be taken in sample selection for patient preference studies when choosing nonpatients.

show abstract

Parent Preferences for Delaying Insulin Dependence in Children at Risk of Stage III Type 1 Diabetes

Cited by 3 publications

References 27 publications

Parent and Pediatrician Preferences for Type 1 Diabetes Screening in the U.S.

Parent and Pediatrician Preferences for Type 1 Diabetes Screening in the U.S.

Exploring Decisional Conflict With Measures of Numeracy and Optimism in a Stated Preference Survey

Can the General Public Be a Proxy for an “At-Risk” Group in a Patient Preference Study? A Disease Prevention Example in Rheumatoid Arthritis

Contact Info

Product

Resources

About