
==== Front
Diabetes Ther
Diabetes Ther
Diabetes Therapy
1869-6953
1869-6961
Springer Healthcare Cheshire

39190273
1637
10.1007/s13300-024-01637-z
Brief Report
Insights into Knowledge and Attitudes About Autoantibody Screening from People Affected by Type 1 Diabetes: A Brief Report
http://orcid.org/0000-0002-4656-3031
Kelly Caitlin S. ckelly@t1dexchange.org

1
Wolf Wendy A. 1
Cornelius Emilee M. 1
Peter Megan E. 1
Chapman Katherine S. 1
Dunne Jessica L. 23
1 https://ror.org/016jvas21 grid.461811.b T1D Exchange, 101 Federal St Suite 440, Boston, MA 02110 USA
2 grid.497530.c 0000 0004 0389 4927 Janssen R&D, 1000 U.S. Route 202 South, Raritan, NJ 08869 USA
3 grid.417555.7 0000 0000 8814 392X Present Address: General Medicine, US Medical Bridgewater, Sanofi, NJ 08807 USA
27 8 2024
27 8 2024
10 2024
15 10 22492261
8 5 2024
31 7 2024
© The Author(s) 2024
2024
https://creativecommons.org/licenses/by-nc/4.0/ Open Access This article is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, which permits any non-commercial use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc/4.0/.
Introduction

Screening for islet-specific autoantibodies can identify individuals at risk for type 1 diabetes (T1D). Despite calls for increased nationwide autoantibody screening efforts, it is unclear how many individuals have participated in screening among people who may benefit from it. Moreover, knowledge and perceptions of autoantibody screening in real-world samples are not well understood.

Methods

We surveyed a sample of individuals (aged 18+ years old) from T1D Exchange Registry with a personal or family history of T1D to assess their self-reported T1D autoantibody knowledge, experiences, and attitudes. Participants belonged to one of three groups: adults with T1D who had a biological child without T1D or future plans for a child (PWD); parents without T1D who had a biological child with T1D and one or more biological children without T1D (Caregivers); and first-degree adult children or siblings to a person with T1D (Relatives). Descriptive analyses (means, standard deviations, frequencies) are presented by participant groups.

Results

A total of 510 participants enrolled in the study. Across groups, participants reported feeling a little to somewhat knowledgeable about autoantibody screening and positive perceptions of autoantibody screening in general. However, few participants had screened their child without T1D (PWDs, 21.94%; Caregivers, 46.30%) or themselves (Relatives, 19.23%). Among those who had screened, participants reported generally positive experiences. Among those who had not screened, many participants were “undecided” about autoantibody screening (PWD, 38.46%; Caregivers, 40.52%; Relatives, 44.44%). Influences reported for participants’ decisions to screen, not screen, or their current indecision differed by group: PWDs (21.70%) and Caregivers (26.87%) most often reported self-initiated research as an influence and Relatives reported they had not previously considered screening (48.28%).

Conclusion

Results highlight the need for more accessible information about screening, including real experiences from those who have screened.

Keywords

Type 1 diabetes mellitus
Autoantibody screening
Early diagnosis
Risk
http://dx.doi.org/10.13039/100005205 Janssen Research and Development issue-copyright-statement© Springer Healthcare Ltd., part of Springer Nature 2024
==== Body
pmcKey Summary Points

Why carry out this study?	
Islet-cell autoantibody screening can help to identify individuals at risk for developing type 1 diabetes (T1D), but it is unclear how much individuals affected by T1D know about screening or the frequency with which real-world samples have participated in autoantibody screening.	
This study describes self-reported knowledge about autoantibody screening, their experiences with autoantibody screening, and the factors that influenced their decision or indecision on participation in screening.	
What was learned from this study?	
Despite generally positive attitudes about autoantibody screening, self-reported knowledge about screening and rates of participation in autoantibody screening were low and many individuals reported they were undecided about autoantibody screening.	
This study highlights the need and suggests potential avenues for increased education and participation in islet-cell autoantibody screening among people affected by T1D.	

Introduction

The prevalence of type 1 diabetes mellitus (T1D) has increased worldwide [1]. In children, early signs of T1D are often misinterpreted as more common acute illnesses, and many are not diagnosed until they show symptoms of diabetic ketoacidosis (DKA) [2]. Although historically perceived as a pediatric condition, adults are also at risk for T1D, and nearly half newly diagnosed T1D cases occur in adulthood [3]. Similar to misinterpreted symptoms in childhood, misunderstanding about T1D in adulthood contributes to many adults initially being misdiagnosed, delaying treatment, and increasing the risk for life-threatening complications, such as DKA [3–5].

Advances in medicine have identified islet-specific autoantibodies which, when combined with other individual factors, can help to identify T1D in adults [6]. Current clinical guidance suggests measuring autoantibodies in symptomatic individuals when a T1D diagnosis is suspected or when a type 2 diabetes mellitus progression occurs faster than expected [6–8]. Yet, autoantibody screening can also be a powerful tool to identify children and adults without symptoms who are at higher risk of developing T1D [7, 9–11]. The American Diabetes Association (ADA) Standards of Care recognizes presymptomatic stages of T1D and recommends screening for autoantibodies before clinical symptoms appear [8].

Yet, there is currently no consensus on whom to test for T1D autoantibodies in presymptomatic individuals to identify those who may be at risk. Though some experts call for general population screening [12], significant hurdles remain before population-based screening can be implemented. Individuals with a family history of T1D are nearly 15 times more likely to develop T1D themselves, thus other experts believe screening first-degree relatives of individuals with T1D remains important [13, 14].

Increased awareness of one’s lifetime risk of T1D may help reduce misdiagnosis and hospitalizations [15]. Although some researchers have also highlighted the potential for screening to also reduce the risk of DKA [16, 17], recent research in pediatric samples is mixed on whether screening without ongoing monitoring provides the same benefits [18]. To date, T1D autoantibody screening efforts in the USA have been somewhat limited to children, such as The Environmental Determinants of Diabetes in the Young (TEDDY) [19]. TrialNet has screened both at-risk children and adult relatives and T1Detect of Breakthrough T1D (formerly Juvenile Diabetes Research Foundation) is expanding educational efforts for population screening [12, 20]. However, perceptions of T1D autoantibody screening outside of the scientific community are largely unknown.

The purpose of this descriptive study was to fill this gap by beginning to understand knowledge, attitudes, and experiences with T1D autoantibody screening in a sample of individuals with a personal or close family history of T1D.

Methods

Recruitment

Participants were recruited from T1D Exchange Registry—an online longitudinal study of type 1 diabetes management from the perspectives of adults with T1D and from caregivers of children with T1D. Participants were eligible if they were at least 18 years old, lived in the USA or a US Territory, fluent in English, and met criteria for one of the following groups1:Person with T1D (PWD): A person living with T1D who had a biological child (< 18 years old) with no diagnosis of T1D (parent PWDs) or who had plans for a biological child (non-parent PWDs).

Caregiver to a child with T1D (Caregiver): A biological parent with no diagnosis of T1D themselves who was a caregiver to a child with T1D and to one or more additional biological child(ren) (< 18 years old) with no diagnosis of T1D.

First-degree relative to an adult with T1D (Relative): A biological first-degree relative (i.e., an adult child or adult sibling) to a person with T1D who had no diagnosis of T1D in themselves or any of their biological children.

Recruitment occurred between October 2022 and December 2022. A subset of adults with T1D enrolled in the Registry and all PWDs who completed the survey could refer their first-degree relative(s) (adult child or sibling) for study participation.

This study received an exemption waiver from Western Copernicus Group-Institutional Review Board (WCG-IRB). This study was performed in accordance with the Helsinki Declaration of 1964 and its amendments. All participants in this study provided electronic informed consent prior to participation. No identifiable information from participants was used in this publication.

Overview of Measures

Participants completed an online survey of demographics, T1D characteristics (of the person with T1D), and self-reported knowledge, attitudes, and experiences around T1D autoantibody (i.e., islet-specific autoantibody) screening. Parent PWDs and Caregivers were asked to think about their experiences and attitudes with screening their non-T1D child for autoantibodies, or their oldest child under the age of 18 without T1D if they had more than one child without T1D. Non-parent PWDs were asked to think of screening their future child for autoantibodies. Relatives were asked to think about their own experiences and attitudes in screening themselves.

Questions for this study were developed collectively by the authors and reviewed by an outside expert with clinical and research expertise in T1D and autoantibody screening.

Demographic and diabetes characteristics

Participants self-reported their age, transgender history, gender, race, ethnicity, and highest level of education attained.

Participants self-reported diabetes characteristics of the person with diabetes (i.e., self for PWDs; oldest child with T1D for Caregivers; first-degree relative with T1D for Relatives). PWDs and Caregivers reported age at diagnosis, current glucose monitoring devices, and current insulin delivery methods. Relatives only reported their relative with T1D’s age at diagnosis, as they may not have had access to their relative’s current medical information.

Knowledge about autoantibodies

All participants were presented with a brief definition of T1D autoantibodies and autoantibody screening. Then participants answered, “How knowledgeable are you about T1D autoantibody screening?” on a 5-point Likert-scale from “Not at all knowledgeable” to “Extremely knowledgeable”.

General attitudes about autoantibody screening

Participants reported their general attitudes about screening (i.e., “Given what you know right now, how do you feel about autoantibody screening?”) on a 5-point Likert-scale from “Very negative” to “Neutral” to “Very positive”.

Experiences with autoantibody screening

Parent PWDs and Caregivers were asked if their child and Relatives were asked if they themselves “…had a screening test for T1D autoantibodies?”. Response options were “yes” or “no”. Non-parent PWDs were automatically categorized as ‘no’.

Perceptions of screening experience among those who screened

Participants who reported ‘yes’ to screening were asked more about their experiences.

Participants reported the method of screening used (i.e., “blood draw in a lab or healthcare provider office”; “finger stick using a kit at healthcare provider’s office”; “finger stick using a kit at home”; or “used another method” with an open-text option to describe it).

Participants also reported screening results (i.e., “no autoantibodies (negative)”; “one autoantibody (weak positive)”; “two or more autoantibodies (positive)”; “prefer not to share”; or “unsure”).

Participants were asked, given hindsight, whether they would still complete initial screening (i.e., “Think back to your initial decision to get [your child/yourself] screened – not any subsequent tests you may have done. If you could do it again, would you still have…screened for T1D autoantibodies?”) with response options of “yes”, “no”, or “unsure”.

Participants rated their screening experience (i.e., “How would you describe your experience with having [your child/yourself] screened for T1D autoantibodies?”) on a 5-point Likert-scale from “very negative” to “neutral” to “very positive”.

Intentions and attitudes about screening among those who had not screened

Participants who reported ‘no’ screening experiences were asked about their screening intentions and attitudes.

Participants were asked “As of right now, how would you describe your plans to have [your child/yourself] screened for T1D autoantibodies?” on a 5-point Likert scale from “never going to screen” to “uncertain/undecided about screening” to “definitely going to screen”.

Participants were also asked “Given what you know, how do you currently feel about having your child/yourself screened for T1D autoantibodies?” on a 5-point Likert scale from “very negative” to “very positive”.

Influences of screening attitudes

All participants were asked what influenced their attitudes about screening (i.e., “Which of the following has influenced your attitudes about having your child screened for T1D autoantibodies (whether you decided ‘to screen’, ‘not to screen’, or are still deciding)?”). Close-ended response options were informed by other research in autoantibody screening [21] and included: “Nothing – I haven’t considered…screening”; “Read or researched on my own”; “My (child’s) personal health history”; “Talked to romantic partner, friends, or family outside the T1D community”; “Talked to people in the T1D community”; “Talked to [my/[my child’s] provider”; and, “Something else”. Those who selected “something else” were also provided with an open-ended response option to describe influences in their own words.

Analysis

Descriptive statistics (e.g., means (M), standard deviations (SD), frequencies, percentages) were summarized in R version 4.2.1 [22]. Participant characteristics were summarized overall and by group (i.e., PWDs, Caregivers, Relatives). Participants’ experiences with and attitudes about screening were summarized and are presented by group.

Results

Sample Characteristics and Demographics

A total of 510 participants were enrolled and completed the survey: 216 PWD, 216 Caregivers, and 78 Relatives. Participant characteristics are presented in Table 1. Across all groups, participants primarily self-identified as White (93.33%), female (86.86%), and reported an educational attainment of a bachelor’s degree or higher (70.78%). Few participants self-identified as transgender (0.39%) and few identified as Hispanic or Latino (4.51%). Diabetes characteristics of the person with diabetes are also presented in Table 1.Table 1 Respondent demographics and diabetes characteristics of individual with type 1 diabetes (T1D)

	Overall (N = 510)	PWD (N = 216)	Caregivers (N = 216)	Relatives (N = 78)	
Demographic characteristics of respondent	
 Agea	38.24 (9.14)	37.06 (9.20)	40.61 (5.35)	34.97 (14.33)	
 Age of child without T1D	10.05 (4.81)	9.94 (5.35)	10.13 (4.40)	–	
 Transgender history—yes	0.39% (2)	0.46% (1)	0% (0)	1.28% (1)	
 Gender	
   Female	86.86% (443)	82.87% (179)	94.44% (204)	76.92% (60)	
   Male	12.35% (63)	16.67% (36)	5.56% (12)	19.23% (15)	
   Non-binary/gender queer	0.59% (3)	0% (0)	0% (0)	3.85% (3)	
   I prefer not to answer	0.20% (1)	0.46% (1)	0% (0)	0% (0)	
 Raceb	
   Black or African American	0.39% (2)	0.93% (2)	0% (0)	0% (0)	
   American Indian, Alaska Native, or Native American	0.39% (2)	0.93% (2)	0% (0)	0% (0)	
   Asianc	1.18% (6)	1.39% (3)	0.46% (1)	2.56% (2)	
   North African or Middle Eastern	0.39% (2)	0.46% (1)	0% (0)	1.28% (1)	
   White	93.33% (476)	93.06% (201)	95.37% (206)	88.46% (69)	
   Multiracial or more than one race	3.14% (16)	1.85% (4)	2.78% (6)	7.69% (6)	
   I prefer not to answer	1.18% (6)	1.39% (3)	1.39% (3)	0% (0)	
Ethnicity—Hispanic or Latino	4.51% (23)	3.70% (8)	6.02% (13)	2.56% (2)	
Highest education—bachelor’s degree or above	70.78% (361)	67.59% (146)	74.54% (161)	69.23% (54)	
Diabetes characteristicsd	
 Age at diagnosis (Self, Child, or Relative)	12.74 (10.96)	16.90 (11.35)	6.28 (3.50)	19.08 (13.92)	
 Continuous glucose monitor (CGM) usee	95.83% (414)	92.59% (200)	99.07% (214)	–	
 Insulin pump usee	80.09% (346)	77.78% (168)	82.41% (178)	–	
 Most recent HbA1c, mean (SD)	6.76% (1.18)	6.83% (1.11)	6.69% (1.24)	–	
Data are presented as mean (SD) or % (frequency)

PWD person with type 1 diabetes, SD standard deviation

aAge refers to the age of the survey respondent (i.e., PWD, Caregiver, or Relative)

bRace included options for Native Hawaiian/Pacific Islander and Other, but no respondents selected these categories

cDefinitions for race were modeled from the US Census Bureau categories on race, which do not provide specificity for those who identify as Asian

dDiabetes characteristics are of the person with diabetes related to the respondent: PWDs = self; Caregivers = oldest child with T1D; Relatives = first-degree relative with T1D

eCurrent CGM and insulin pump use were only asked of PWDs (n = 216) and Caregivers (n = 216), with an overall subsample of n = 432

Knowledge About Autoantibodies

As presented in Table 2, participants reported feeling between ‘a little’ and ‘somewhat’ knowledgeable about autoantibody screening depending on group: PWDs reported feeling between ‘a little’ and ‘some’ knowledge (M = 2.45, SD = 0.96); Caregivers reported ‘some’ knowledge (M = 2.97, SD = 0.90); and Relatives reported ‘a little’ knowledge (M = 2.01, SD = 0.80).Table 2 Means and response distribution of general knowledge and perceptions of type 1 diabetes (T1D) autoantibody screening by participant group

	PWD (N = 216)	Caregivers (N = 216)	Relatives (N = 78)	
Self-reported knowledge of autoantibody screening [mean (SD)]	2.45 (0.96)	2.97 (0.90)	2.01 (0.80)	
 Not at all knowledgeable	38 (17.59%)	9 (4.17%)	21 (26.92%)	
 A little knowledgeable	72 (33.33%)	52 (24.07%)	38 (48.72%)	
 Somewhat knowledgeable	80 (37.04%)	103 (47.69%)	16 (20.51%)	
 Very knowledgeable	22 (10.19%)	41 (18.98%)	3 (3.85%)	
 Extremely knowledgeable	4 (1.85%)	11 (5.09%)	0 (0%)	
Perceptions of screening experience [mean (SD)]	4.13 (0.85)	4.12 (0.96)	4.04 (0.78)	
 Very negative	0 (0%)	0 (0%)	0 (0%)	
 Somewhat negative	8 (3.70%)	12 (5.56%)	1 (1.28%)	
 Neutral	42 (19.44%)	51 (23.61%)	19 (24.36%)	
 Somewhat positive	80 (37.04%)	52 (24.07%)	34 (43.59%)	
 Very positive	86 (39.81%)	101 (46.76%)	24 (30.77%)	
Data are presented as mean (SD) or frequency (%)

PWD person with type 1 diabetes, SD standard deviation

General Attitudes About Autoantibody Screening

Participants reported feeling somewhat positive about autoantibody screening regardless of group (M = 4.04–4.13, SD = 0.78–0.96) as shown in Table 2. Importantly, no participants in any group reported feeling ‘very negative’ towards screening, and few participants (n = 1–12 across groups) reported feeling ‘somewhat negative’.

Experiences with Autoantibody Screening

Screening experiences among all participants are presented in Table 3. Few participants had screened for T1D autoantibodies: 21.94% of parent PWDs, 46.30% of Caregivers, and 19.23% of Relatives.Table 3 Frequencies and percentages of type 1 diabetes (T1D) autoantibody screening experiences and attitudes among participants who had screened and participants who had not

Experiences and attitudes of participants who screened	PWD (N = 34)a	Caregivers (N = 100)	Relatives (N = 15)	
Screening method	
 Blood draw in a lab or provider office	23 (67.65%)	66 (66.00%)	11 (73.33%)	
 Finger stick using a kit at provider’s office	0 (0%)	3 (3.00%)	1 (6.67%)	
 Finger stick using a kit at home	10 (29.41%)	26 (26.00%)	2 (13.33%)	
 Used another method (please describe)	1 (2.94%)b	5 (5.00%)c	1 (6.67%)d	
Results of screening	
 No autoantibodies	30 (88.24%)	88 (88.00%)	11 (73.33%)	
 One autoantibody	3 (8.82%)	1 (1.00%)	2 (13.33%)	
 Two or more autoantibodies	1 (2.94%)	3 (3.00%)	0 (0%)	
 Prefer not to share	0 (0%)	3 (3.00%)	0 (0%)	
 Unsure	0 (0%)	5 (5.00%)	2 (13.33%)	
Perceptions of screening experience [mean (SD)]	4.00 (0.95)	4.01 (0.94)	3.87 (1.06)	
 Very negative	0 (0%)	0 (0%)	0 (0%)	
 Somewhat negative	2 (5.88%)	8 (8.00%)	1 (6.67%)	
 Neutral	9 (26.47%)	19 (19.00%)	6 (40.00%)	
 Somewhat positive	10 (29.41%)	37 (37.00%)	2 (13.33%)	
 Very positive	13 (38.24%)	36 (36.00%)	6 (40.00%)	
Hindsight decision to screen again	
 Yese	33 (97.06%)	97 (97.00%)	14 (93.33%)	
 No	0 (0%)	0 (0%)	0 (0%)	
 Unsure	1 (2.9%)	3 (3.00%)	1 (6.67%)	
Plans and attitudes of participants who had not screened	PWD (N = 182)f	Caregivers (N = 116)	Relatives (N = 53)	
Plans to screen	
 Never going to screen	5 (2.75%)	5 (4.31%)	2 (3.17%)	
 Probably not going to screen	18 (9.89%)	30 (25.86%)	23 (36.51%)	
 Uncertain/undecided about screening	70 (38.46%)	47 (40.52%)	28 (44.44%)	
 Probably going to screen	43 (23.63%)	23 (19.83%)	9 (14.29%)	
 Definitely going to screen	46 (25.27%)	11 (9.48%)	1 (1.59%)	
 Current attitudes on screening child/self [mean (SD)]	3.92 (1.02)	3.44 (1.03)	3.79 (0.81)	
 Very negative	2 (1.10%)	1 (0.86%)	0 (0%)	
 Somewhat negative	16 (8.79%)	21 (18.10%)	1 (1.59%)	
 Neutral	42 (23.08%)	43 (37.07%)	25 (39.68%)	
 Somewhat positive	57 (31.32%)	28 (24.14%)	23 (36.51%)	
 Very positive	65 (35.72%)	23 (19.83%)	14 (22.22%)	
PWD person with type 1 diabetes, SD standard deviation

aPercentages of PWDs who had screened were calculated out of the subsample (n = 155) of parent PWDs

bOne participant reported a blood draw at diabetes camp

cResponses included reported a blood draw with TrialNet at diabetes camp (n = 2), other screening with TrialNet (n = 2), and a blood draw at a diabetes conference (n = 1)

dOne participant reported they did not remember

eAll participants who reported one or more T1D autoantibodies (n = 10 across groups) indicated “yes” they would screen again

fPWDs who had not screened included 121 parent PWDs and 61 non-parent PWDs

Screening Experiences Among Those Who Screened

Among those who had screened (Table 3), the most common screening method was a blood draw in a healthcare provider office. Most participants reported “no autoantibodies” across all groups (73.33–88.24%). Participants generally rated their experience with screening as somewhat positive (M = 3.87–4.01, SD = 0.94–1.06). When asked to consider hindsight in their screening experiences, nearly all (93.33–97.06%) agreed they would still screen if given the opportunity to reconsider. Moreover, no participants reported they would not screen (i.e., ‘no’) if given the opportunity to reconsider.

Screening Intentions and Attitudes Among Those Who Had Not Screened

Among those who had not yet screened (Table 3), many (38.46–44.44%) reported they were “uncertain/undecided” about autoantibody screening. Few participants (2.75–4.31%) reported they were “never” going to screen. There was more variability by participant group among those who reported they were “definitely” going to screen (1.59–25.27%). The remaining participants were split between “probably not” (9.89–36.51%) and “probably” (14.29–23.63%) going to screen.

Further, among Caregivers who had not screened, current attitudes about having their own child screened (M = 3.44, SD = 1.03) were less positive compared to the entire sample of Caregivers’ general attitudes about screening (M = 4.12, SD = 0.96). Similar patterns of less positivity were observed for PWD’s attitudes of screening their own child (M = 3.92, SD = 1.02) compared to the general perceptions in the full sample of PWDs (M = 4.13, SD = 0.85) and for Relatives screening themselves (M = 3.79, SD = 0.81) compared to general perceptions about screening among the full sample of Relatives (M = 4.04, SD = 0.78). However, the differences observed for PWDs and Relatives were smaller in magnitude.

Influencing Factors for Autoantibody Screening Attitudes

Participants’ attitudes about screening regardless of their decision status (i.e., deciding to screen, deciding to not screen, or remaining undecided) were influenced by various factors. As participants could select more than one influence, responses exceeded the number of participants in each group: PWDs (318 responses); Caregivers (387 responses); and Relatives (87 responses). Frequencies are presented in Table 4 and highlights are summarized below.Table 4 Self-reported influences of participants’ current decisions on type 1 diabetes (T1D) autoantibody screening

	PWD (318 responses)	Caregivers (387 responses)	Relatives (87 responses)	
Nothing – I haven’t considered T1D autoantibody screening for my child [myself] before	62 (19.50%)	19 (4.91%)	42 (48.28%)	
Read or researched more about screening on my own	69 (21.70%)	104 (26.87%)	8 (9.20%)	
My child’s [my] personal health history (e.g., a ‘health scare’ or experiencing vague symptoms)	29 (9.12%)	29 (7.49%)	11 (12.64%)	
Talked to my romantic partner, my family, or my friends outside the T1D community about screening	51 (16.04%)	67 (17.31%)	5 (5.75%)	
Talked to people in the T1D community about screening	44 (13.84%)	65 (16.80%)	10 (11.49%)	
Talked to my child’s [my] healthcare provider about screening	33 (10.38%)	73 (18.86%)	4 (4.60%)	
Something else (please describe)	30 (9.43%)	30 (7.75%)	7 (8.05%)	
All participants responded to this question, whether they had decided to screen, decided not to screen, or were undecided

PWD person with type 1 diabetes

PWDs (21.70%) and Caregivers (26.87%) similarly reported self-initiated research on T1D autoantibody screening as an influencing factor in their attitudes about screening. Comparatively fewer relatives (9.20%) listed self-initiated research as a factor for them.

PWDs (16.04%) and Caregivers (17.31%) also reported talking to their romantic partner as a factor, but this was less often selected by Relatives (5.75%).

Talking to people within the T1D community was selected as an influencing factor similarly across all groups (PWDs, 13.84%; Caregivers, 16.80%; Relatives, 11.49%).

Many Relatives (48.28%) and some PWDs (19.49%) reported they had not previously considered T1D autoantibody screening, but this was less common among Caregivers (4.91%).

A subset of participants (PWDs, 30; Caregivers, 30; Relatives, 7) selected “something else” as an influencing factor and provided an open-ended response. For PWDs and Caregivers, examples of these self-described additional influencing factors included the fear of a positive result (PWDs, 16.67%; Caregivers, 16.67%) and the inability to prevent T1D (PWDs, 13.33%; Caregivers, 6.67%). For Relatives, examples included family discussions around screening (28.57%) and one individual (14.29%) stated their current age made it ‘unlikely’ that they would develop T1D.

Discussion

Despite our sample consisting of individuals who have been affected by T1D (in themselves, their child, or their sibling/parent) participants only rated themselves as ‘a little’ to ‘somewhat’ knowledgeable about autoantibody screening. Participants reported positive general attitudes towards screening. Though there is little research about attitudes towards screening in the USA, a recent qualitative study in the UK provides evidence that familiarity with T1D—particularly with DKA at diagnosis—may influence this positive perception of autoantibody screening compared to those without a personal connection to T1D [23]. Interestingly, among individuals who have not screened, specific attitudes towards getting one’s child screened or oneself screened were somewhat less positive compared to the overall positive attitudes about screening in the full sample, particularly among Caregivers. Some research has discussed the fear and anxiety parents have expressed around having their child screened [23]. The anxiety around a positive screening result could partially explain the misalignment between the general belief that autoantibody screening is good but screening for my child or for me is somewhat less positive. However, more research is needed to understand these complex attitudes about screening.

Screening rates were low across all groups, with the highest rates observed among Caregivers. The finding that PWDs had very low screening rates of their biological children was surprising, given their personal experience with T1D. Relatives also had very low rates of screening, with one participant reporting their adult age made them feel less vulnerable to a T1D diagnosis. With upwards of half of newly diagnosed cases of T1D occurring in adults worldwide [3], ensuring the availability of accurate information around risk for T1D could benefit autoantibody screening efforts.

The experiences of participants who had screened provides additional valuable insights. While screening rates were low overall, the majority of individuals who had screened (more than 90% regardless of group) would still make the decision to screen. Our findings suggest autoantibody screening is an overall good experience for most people who choose to screen. Sharing these positive real-world experiences with screening may help increase screening rates in people who are undecided or uncertain.

Across all participants, an information gap persists about what autoantibody screening is, its availability, and its usefulness for people with a self- or family-history of T1D. Many participants reported they had not previously considered autoantibody screening at all, especially for PWDs and Relatives. In their limited open-ended responses, some participants expressed they did not realize screening was an option prior to enrolling in this study. Less frequently, some participants discussed how a lack of preventative treatment impacted their decision to screen. With new treatments such as teplizumab becoming available to prevent or delay T1D symptoms and diagnosis [24], people affected by T1D may now be more open to screening.

It is also important to consider that information and education alone may not be sufficient to move all individuals from ‘undecided’ to ‘definitely’ willing to screening. As shown in our Caregivers—and, to a lesser extent, in our PWDs and Relatives—general attitudes about screening were more positive than specific attitudes of having one’s child or oneself screened for autoantibodies. Moreover, outside of the measured influences for screening decisions, there may be additional personal benefits and personal barriers to screening that were not captured in the scope of this brief report [25, 26]. Future research may be helpful to better understand additional reasons influencing screening decisions.

While these results provide insights into the experiences and attitudes of autoantibody screening among people affected by T1D, there are limitations to consider. This was a descriptive, cross-sectional study design among a self-selected sample recruited primarily from T1D Exchange’s Registry and Online Communities: two cohorts of individuals generally highly motivated to participate in scientific research and highly educated about. Most participants self-identified their gender as female. The descriptive design and limited number of individuals who identified as another gender (e.g., male, non-binary) meant we could not adequately explore potential gender differences in islet-cell autoantibody knowledge or screening experiences. Moreover, sample demographics overall were homogeneous, with most participants identifying as White, non-Hispanic, highly educated, and self-reporting HbA1c levels (among PWDs and Caregivers) lower than the general population. Thus, these results may not generalize to all individuals affected by T1D. There is an unmet need to further understand knowledge, experiences, and attitudes about screening among individuals of lower socioeconomic status and among populations who are more racially and ethnically diverse. As no validated measures existed at the time of the study for autoantibody screening experiences and attitudes, questions were designed by the authors. Finally, the number of individuals who reported one autoantibody or two or more autoantibodies was small though not unexpected. Research from TrialNet in relatives found 5% had one autoantibody and only 2.6% had two or more autoantibodies [12]. Our small subsample sizes limit comparisons between individuals with autoantibodies and those without in this study. However, the results from this study provide meaningful insights into real-world experiences with islet-cell autoantibody screening and potential avenues for increasing knowledge about and participation in screening.

Conclusions

Given recommendations to move towards population level screening [12], the fact that such a knowledge gap coexists with positive attitudes and low participation in screening highlights the need for increased educational and health promotional efforts around T1D autoantibody screening. As many of our participants were undecided about screening, a greater focus on providing accurate and accessible information within T1D communities is an essential step toward greater autoantibody screening participation. Moreover, our results suggest ensuring easily accessible and accurate information about autoantibody screening and including real-life experiences of those who have screened in T1D communities may be key factors in increasing screening participation in at-risk individuals. With these increased efforts, we may be able to move intentions about screening (from undecided or considering) to action.

Acknowledgements

We thank the participants of the T1D Exchange Registry, the T1D Exchange Online Community, and their relatives for their participation in this study.

Author Contributions

All authors contributed to the development and review of this manuscript. Specific author contributions are as follows: Caitlin S. Kelly: Conceptualization; Methodology; Investigation; Writing – Original Draft; Writing – Review & Editing; Visualization. Wendy A. Wolf: Writing – Review & Editing; Supervision; Resources. Emilee M. Cornelius: Formal Analysis; Data Curation; Writing – Review & Editing. Megan E. Peter: Conceptualization; Writing – Review & Editing. Katherine S. Chapman: Project administration; Writing – Review & Editing. Jessica L. Dunne: Conceptualization; Supervision; Review & Editing.

Funding

This work was sponsored by Janssen R&D. T1D Exchange Registry is funded by The Leona M. and Harry B. Helmsley Charitable Trust grant G-2103-05086. The journal’s Rapid Service Fee was funded by T1D Exchange.

Data Availability

The data that support these findings are not publicly available to protect the privacy of study participants and due to reasonable restrictions of the study sponsor. Reasonable data requests may be accommodated upon review from the authors and sponsor. Please contact the corresponding author.

Declarations

Conflict of Interest

Caitlin S. Kelly, Wendy A. Wolf, Emilee M. Cornelius, Megan E. Peter, and Katherine S. Chapman are employees of T1D Exchange. Jessica L. Dunne was employed at Janssen R&D during data collection and is now employed at Sanofi US. The authors have no other conflicts of interest to disclose.

Ethical Approval

This study received an exemption waiver from WCG-IRB. This study was performed in accordance with the Helsinki Declaration of 1964 and its amendments. All participants in this study provided electronic informed consent prior to participation. No identifiable information from participants has been used in this publication.

1 Participants who met criteria in two or more groups were not eligible to participate.
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References

1. Mobasseri M Shirmohammadi M Amiri T Vahed N Hosseini Fard H Ghojazadeh M Prevalence and incidence of type&nbsp;1 diabetes in the world: a systematic review and meta-analysis Health Promot Perspect 2020 10 2 98 115 10.34172/hpp.2020.18 32296622
Mobasseri M, Shirmohammadi M, Amiri T, Vahed N, Hosseini Fard H, Ghojazadeh M. Prevalence and incidence of type 1 diabetes in the world: a systematic review and meta-analysis. Health Promot Perspect. 2020;10(2):98–115. 10.34172/hpp.2020.1832296622
2. Mencher SR Frank G Fishbein J Diabetic ketoacidosis at onset of type&nbsp;1 diabetes: rates and risk factors today to 15&nbsp;years ago Global Pediatr Health 2019 1 6 2333794X19870394 10.1177/2333794x19870394
Mencher SR, Frank G, Fishbein J. Diabetic ketoacidosis at onset of type 1 diabetes: rates and risk factors today to 15 years ago. Global Pediatr Health. 2019;1(6):2333794X19870394. 10.1177/2333794x19870394
3. Leslie RD Evans-Molina C Freund-Brown J Adult-onset type&nbsp;1 diabetes: current understanding and challenges Diabetes Care 2021 44 11 2449 2456 10.2337/dc21-0770 34670785
Leslie RD, Evans-Molina C, Freund-Brown J, et al. Adult-onset type 1 diabetes: current understanding and challenges. Diabetes Care. 2021;44(11):2449–56. 10.2337/dc21-077034670785
4. Redondo MJ Van Raalte DH Age ain’t nothing but a number … or is it? Diabetes Care 2023 46 6 1135 1136 10.2337/dci23-0013 37220267
Redondo MJ, Van Raalte DH. Age ain’t nothing but a number … or is it? Diabetes Care. 2023;46(6):1135–6. 10.2337/dci23-001337220267
5. Thomas NJ Jones AG The challenges of identifying and studying type&nbsp;1 diabetes in adults Diabetologia 2023 66 12 2200 2212 10.1007/s00125-023-06004-4 37728732
Thomas NJ, Jones AG. The challenges of identifying and studying type 1 diabetes in adults. Diabetologia. 2023;66(12):2200–12. 10.1007/s00125-023-06004-437728732
6. Sosenko JM Skyler JS Palmer JP The prediction of type&nbsp;1 diabetes by multiple autoantibody levels and their incorporation into an autoantibody risk score in relatives of type&nbsp;1 diabetic patients Diabetes Care 2013 36 9 2615 2620 10.2337/dc13-0425 23818528
Sosenko JM, Skyler JS, Palmer JP, et al. The prediction of type 1 diabetes by multiple autoantibody levels and their incorporation into an autoantibody risk score in relatives of type 1 diabetic patients. Diabetes Care. 2013;36(9):2615–20. 10.2337/dc13-042523818528
7. Eason RJ, Thomas NJ, Hill AV, Knight BA, Carr A, T. Hattersley A, et al. Routine islet autoantibody testing in clinically diagnosed adult-onset type 1 diabetes can help identify misclassification and the possibility of successful insulin cessation. 2022. 10.2337/figshare.21120535
8. American Diabetes Association Professional Practice CommitteeElSayed NA Aleppo G Diagnosis and classification of diabetes: standards of care in diabetes—2024 Diabetes Care 2024 47 Suppl_1 S20 42 10.2337/dc24-s002 38078589
American Diabetes Association Professional Practice Committee, ElSayed NA, Aleppo G, et al. Diagnosis and classification of diabetes: standards of care in diabetes—2024. Diabetes Care. 2024;47(Suppl_1):S20–42. 10.2337/dc24-s00238078589
9. Holt RIG DeVries JH Hess-Fischl A The management of type&nbsp;1 diabetes in adults. A consensus report by the american diabetes association (ADA) and the European Association for the Study of Diabetes (EASD) Diabetes Care 2021 44 11 2589 2625 10.2337/dci21-0043 34593612
Holt RIG, DeVries JH, Hess-Fischl A, et al. The management of type 1 diabetes in adults. A consensus report by the american diabetes association (ADA) and the European Association for the Study of Diabetes (EASD). Diabetes Care. 2021;44(11):2589–625. 10.2337/dci21-004334593612
10. Insel RA Dunne JL Atkinson MA Staging presymptomatic type&nbsp;1 diabetes: a scientific statement of JDRF, the endocrine society, and the american diabetes association Diabetes Care 2015 38 10 1964 1974 10.2337/dc15-1419 26404926
Insel RA, Dunne JL, Atkinson MA, et al. Staging presymptomatic type 1 diabetes: a scientific statement of JDRF, the endocrine society, and the american diabetes association. Diabetes Care. 2015;38(10):1964–74. 10.2337/dc15-141926404926
11. Peters S Screening for autoantibodies in type&nbsp;1 diabetes a call to action J Family Pract 2021 10.12788/jfp.0223
Peters S. Screening for autoantibodies in type 1 diabetes a call to action. J Family Pract. 2021. 10.12788/jfp.0223.
12. Sims EK Besser REJ Dayan C Screening for type&nbsp;1 diabetes in the general population: a status report and perspective Diabetes 2022 71 4 610 623 10.2337/dbi20-0054 35316839
Sims EK, Besser REJ, Dayan C, et al. Screening for type 1 diabetes in the general population: a status report and perspective. Diabetes. 2022;71(4):610–23. 10.2337/dbi20-005435316839
13. Greenbaum CJ A key to T1D prevention: screening and monitoring relatives as part of clinical care Diabetes 2021 70 5 1029 1037 10.2337/db20-1112 33931405
Greenbaum CJ. A key to T1D prevention: screening and monitoring relatives as part of clinical care. Diabetes. 2021;70(5):1029–37. 10.2337/db20-111233931405
14. Steck AK Fouts A Miao D ECL-IAA and ECL-GADA can identify high-risk single autoantibody-positive relatives in the TrialNet pathway to prevention study Diabetes Technol Ther 2016 18 7 410 414 10.1089/dia.2015.0316 26991969
Steck AK, Fouts A, Miao D, et al. ECL-IAA and ECL-GADA can identify high-risk single autoantibody-positive relatives in the TrialNet pathway to prevention study. Diabetes Technol Ther. 2016;18(7):410–4. 10.1089/dia.2015.031626991969
15. Edelman S Early intervention by family physicians to delay type&nbsp;1 diabetes J Fam Prac 2023 10.12788/jfp.0618
Edelman S. Early intervention by family physicians to delay type 1 diabetes. J Fam Prac. 2023. 10.12788/jfp.0618.
16. Ghalwash M Anand V Lou O Islet autoantibody screening in at-risk adolescents to predict type&nbsp;1 diabetes until young adulthood: a prospective cohort study Lancet Child Adolesc Health 2023 7 4 261 268 10.1016/s2352-4642(22)00350-9 36681087
Ghalwash M, Anand V, Lou O, et al. Islet autoantibody screening in at-risk adolescents to predict type 1 diabetes until young adulthood: a prospective cohort study. Lancet Child Adolesc Health. 2023;7(4):261–8. 10.1016/s2352-4642(22)00350-936681087
17. Cherubini V Chiarelli F Autoantibody test for type&nbsp;1 diabetes in children: are there reasons to implement a screening program in the general population? A statement endorsed by the Italian Society for Paediatric Endocrinology and Diabetes (SIEDP-ISPED) and the Italian Society of Paediatrics (SIP) Ital J Pediatr 2023 49 1 87 10.1186/s13052-023-01438-3 37468976
Cherubini V, Chiarelli F. Autoantibody test for type 1 diabetes in children: are there reasons to implement a screening program in the general population? A statement endorsed by the Italian Society for Paediatric Endocrinology and Diabetes (SIEDP-ISPED) and the Italian Society of Paediatrics (SIP). Ital J Pediatr. 2023;49(1):87. 10.1186/s13052-023-01438-337468976
18. Krischer JP Liu X Vehik K Predicting islet cell autoimmunity and type&nbsp;1 diabetes: an 8-year TEDDY study progress report Diabetes Care 2019 42 6 1051 1060 10.2337/dc16-0181 30967432
Krischer JP, Liu X, Vehik K, et al. Predicting islet cell autoimmunity and type 1 diabetes: an 8-year TEDDY study progress report. Diabetes Care. 2019;42(6):1051–60. 10.2337/dc16-018130967432
19. Sooy M Pyle L Alonso GT Lower prevalence of diabetic ketoacidosis at diagnosis in research participants monitored for hyperglycemia J Clin Endocrinol Metabol 2024 10.1210/clinem/dgae158
Sooy M, Pyle L, Alonso GT, et al. Lower prevalence of diabetic ketoacidosis at diagnosis in research participants monitored for hyperglycemia. J Clin Endocrinol Metabol. 2024. 10.1210/clinem/dgae158.
20. Gomez P Sanchez J Type&nbsp;1 diabetes screening and diagnosis Endocrinol Metab Clin North Am 2024 53 1 17 26 10.1016/j.ecl.2023.09.008 38272595
Gomez P, Sanchez J. Type 1 diabetes screening and diagnosis. Endocrinol Metab Clin North Am. 2024;53(1):17–26. 10.1016/j.ecl.2023.09.00838272595
21. Peter M Chapman KSM Dunne JL Kelly CS Wolf W 668-P: exploring attitudes toward autoantibody screening in people living with T1D, caregivers, and first-degree relatives Diabetes 2023 72 Suppl_1 668-P 10.2337/db23-634-p
Peter M, Chapman KSM, Dunne JL, Kelly CS, Wolf W. 668-P: exploring attitudes toward autoantibody screening in people living with T1D, caregivers, and first-degree relatives. Diabetes. 2023;72(Suppl_1):668-P. 10.2337/db23-634-p
22. R Core Team. R: A Language and Environment for Statistical Computing [Internet]. Vienna, Austria; 2016. https://www.R-project.org/
23. Quinn LM Narendran P Bhavra K Developing a general population screening programme for paediatric type&nbsp;1 diabetes: evidence from a qualitative study of the perspectives and attitudes of parents Pediatr Diabetes 2024 2024 1 10 10.1155/2024/9927027
Quinn LM, Narendran P, Bhavra K, et al. Developing a general population screening programme for paediatric type 1 diabetes: evidence from a qualitative study of the perspectives and attitudes of parents. Pediatr Diabetes. 2024;2024:1–10. 10.1155/2024/9927027.
24. Kordonouri O Reschke F Danne T Teplizumab approval for type&nbsp;1 diabetes in the USA Lancet Diabetes Endocrinol 2023 11 2 77 78 10.1016/S2213-8587(22)00391-6 36623521
Kordonouri O, Reschke F, Danne T. Teplizumab approval for type 1 diabetes in the USA. Lancet Diabetes Endocrinol. 2023;11(2):77–8. 10.1016/s2213-8587(22)00391-636623521
25. Hummel S Carl J Friedl N Children diagnosed with presymptomatic type&nbsp;1 diabetes through public health screening have milder diabetes at clinical manifestation Diabetologia 2023 66 9 1633 1642 10.1007/s00125-023-05953-0 37329450
Hummel S, Carl J, Friedl N, et al. Children diagnosed with presymptomatic type 1 diabetes through public health screening have milder diabetes at clinical manifestation. Diabetologia. 2023;66(9):1633–42. 10.1007/s00125-023-05953-037329450
26. Raab J Haupt F Scholz M Capillary blood islet autoantibody screening for identifying pre-type&nbsp;1 diabetes in the general population: design and initial results of the Fr1da study BMJ Open 2016 6 5 e011144 10.1136/bmjopen-2016-011144 27194320
Raab J, Haupt F, Scholz M, et al. Capillary blood islet autoantibody screening for identifying pre-type 1 diabetes in the general population: design and initial results of the Fr1da study. BMJ Open. 2016;6(5):e011144. 10.1136/bmjopen-2016-01114427194320
