Psychosocial aspects of early detection in type 1 diabetes: Language matters, decision making and support needs

Abstract

Aim

The potential implementation of early type 1 diabetes (T1D) detection pathways, encompassing autoantibody screening and longitudinal monitoring, raises important psychosocial considerations for ethical, person‐centred care. This review summarises evidence on the psychosocial impact of early T1D detection, identifying key evidence gaps and recommendations for integrating psychosocial support.

Methods

A semi‐structured narrative review was conducted using PubMed‐indexed international peer‐reviewed literature, complemented by experiential insights from an interdisciplinary authorship team.

Results

Broader Health screening literature emphasises that individuals' values, beliefs about chance, severity and controllability, alongside sociocultural context, shape decision making and coping. Early T1D detection introduces inherent uncertainty regarding timing and clinical progression. Despite a limited evidence base, largely focused on parents and lacking tailored person‐reported outcome measures (PROMs), studies suggest a transient increase in negative emotional responses (e.g., anxiety, depressive symptoms, distress). Individual variation appears linked to screening outcome, prior experiences with T1D and tolerance for uncertainty. Effective, stigma‐free communication and psychosocial support delivered by family‐oriented professionals can facilitate informed, autonomous decision making. Mental health specialists play a key role in developing behaviourally informed protocols for care and communication, training care teams and providing targeted support for families experiencing persistent distress. Community involvement in the design, testing and evaluation of these communication tools, models of care and development of PROMs are essential for acceptability and equity.

Conclusion

Integrating psychological monitoring and care is a critical component of the early T1D detection pathway. Contextually relevant and co‐designed information, support strategies and PROMs are needed to help families make informed decisions and navigate uncertainties.

What's new.

• In the potential implementation of early type 1 Diabetes (T1D) detection pathways, interdisciplinary collaboration, sensitive communication and integrating psychosocial care are necessary.

• In the decision‐making process, recommendations and information should be aligned with individual beliefs, previous experiences and values. Non‐participation should be offered as a valid option.

• Families need support in coping with anxiety and the uncertainty of seroconversion timing and probability.

• To monitor the psychological impact, there is a need to co‐design validated, inclusive, sensitive PROMs that developmentally and culturally reflect early‐stage T1D psychosocial experiences.

1. INTRODUCTION

Rapid advances in the early detection of type 1 diabetes (T1D) are transforming healthcare support and treatment options before clinical diagnosis (i.e., before insulin must be initiated). From the broader medical context, it is recognised that participating in early detection programs has psychological implications for participants and their families and that there is a need to provide psychosocial support along the early detection pathway. However, how best to provide such support—from initial consideration of participating through treatment initiation at clinical diagnosis—remains unclear. Therefore, we undertook a semi‐structured narrative review focused on the psychological aspects of decision making and coping with uncertainty throughout the early detection pathway, including the role of information (delivery, modalities and language), potential forms of support and the role of the psychologist (Figure 1). Findings are drawn from PubMed‐indexed international peer‐reviewed literature, complemented by experiential insights and perspectives from the interdisciplinary authorship team, including lived and loved experience of T1D. We identify significant gaps in the literature, emphasising the urgent need to advance understanding of the psychosocial dimensions of screening and early detection across diverse cultural, developmental and socioeconomic contexts.

FIGURE 1.

Summary of the psychosocial aspects of the pathway of early detection of type 1 diabetes.

2. THE STAGES OF T1D

T1D is a progressive autoimmune condition characterised by the destruction of insulin‐producing beta‐cells in the pancreas. This process typically begins years before the onset of clinical symptoms. ¹ The autoimmune response appears to be triggered by an unknown event—most likely an environmental exposure—in individuals with a genetic predisposition. ² , ³

T1D is divided into stages based on the presence of multiple islet autoantibodies (confirmed in a second blood sample) and the degree of dysglycaemia. ⁴ , ⁵ Early‐stage T1D is defined as the presence of two or more islet autoantibodies with normoglycaemia (stage 1) or with dysglycaemia (stage 2), and stage 3 T1D is defined using the current American Diabetes Association (ADA) criteria that necessitate insulin treatment.

Paediatric data suggest that in the case of a single islet autoantibody, the 10‐year chance of developing stage 3 T1D over a period of 10 years is approximately 15%, ⁴ although for one in four of these children the antibodies may revert to negative. ⁶ Progression from single to ≥2 islet autoantibodies often occurs within 2 years from seroconversion, particularly in young children. ³ Data in adults on rates of progression are currently lacking.

Individuals with ≥1 confirmed islet autoantibodies are recommended to enter a follow‐up program, including metabolic monitoring, education about symptoms and psychosocial support, with frequency and methodology depending on age, time since first islet autoantibody detection, number of islet autoantibodies and T1D symptoms. ⁷ It is important that laboratories performing autoantibody assays participate in standardisation and quality programs as developed by the Islet Antibody Standardisation Program. ⁸

2.1. Medical benefits of early detection

Early diagnosis of T1D through islet autoantibody detection combined with metabolic monitoring is associated at stage 3 diagnosis with lower HbA1c ⁹ (potentially contributing to longer‐term health ¹⁰ ), and reduced frequency of diabetes ketoacidosis (DKA) (from approximately 30% to 5% ⁹ , ¹¹ ). C Cost‐effectiveness data are therefore supportive of early detection pathways, provided they decrease diabetes ketoacidosis at stage 3 onset and costs related to long‐term complications. ¹² Early islet autoantibody screening may also reduce misdiagnosis of type 2 diabetes after age 30, which may be as high as 40%, ¹³ and enable access to early intervention clinical trials aiming to delay T1D progression to stage 3, where the first treatment approach has received approval in some countries. ⁵ , ¹⁴

2.2. Recommendations and challenges in early diagnosis pathways

Strategies for early diagnosis of T1D include islet autoantibody screening in (a) groups with elevated genetic risk (i.e., a family history of T1D), or (b) the general population. ³ As the relative lifetime chance of T1D is increased up to 15‐fold in people having a first‐degree relative with T1D, early diagnosis programs primarily targeted children of parents or siblings with T1D. ³ In studies examining islet autoantibodies in children having a genetic susceptibility for T1D, the ‘number needed to screen’ (NNS) was 12.5, meaning 13 children needed to participate in islet autoantibody measurement to identify one child with detected islet autoantibodies. ⁴ At the same time, 90% of people diagnosed with T1D do not have a family history, ³ stressing the considerations about population‐wide early diagnosis initiatives. However, a large‐scale early diagnosis program in German children aged 2–6 years had a NNS of 324—substantially higher than in the birth cohort studies. ¹⁵ To complicate matters further, epidemiological data suggest that only 15–20% of people develop T1D before the age of 14. ¹⁶ Thus, effective early detection and monitoring efforts would need to extend beyond children and adolescents, likely increasing the NNS even further. The current absence of accessing interventions to delay T1D, strategies to prevent T1D and the limited evidence on progression in individuals with autoantibodies who are not of white European ancestry present further challenges to the implementation of screening programs. Further research into the development and evaluation of acceptability communication campaigns, consent processes and screening pathways is also needed, incorporating co‐design with community (including adolescents and family members) and community partners, particularly from underrepresented groups.

3. PSYCHOLOGICAL IMPACTS OF SCREENING—CURRENT STATUS

To date, most psychosocial research in the context of early‐stage T1D has focused on parents of children, with limited investigation of the experiences of the children themselves or of individuals across the lifespan. ¹⁷ Screening participation and the detection of autoantibodies have been associated with parental symptoms of depression and diabetes‐specific anxiety. ¹⁷ Among caregivers whose child develops early‐stage T1D, (diabetes‐specific) anxiety may remain high, ¹⁸ , ¹⁹ , ²⁰ while it tends to decrease among caregivers of children who remain negative for multiple autoantibodies. ¹⁸ , ²⁰ Results on depressive symptoms and general parental distress are mixed. Some suggest that depressive symptomatology and distress decline over time, ¹⁵ , ²¹ , ²² while others suggest that certain vulnerable groups—ethnic minority parents and those with a history of depression—may experience greater depressive and distress symptoms. ²² , ²³ Given that progression to stage 3 T1D may take years, ⁴ the unpredictable timing of the child's diagnosis can further contribute to psychological burden. It has been suggested that participation in early detection and monitoring programs might reduce the psychological burden at stage 3 diagnosis (given lengthened time for psychological adjustment and preparation for treatment initiation). However, findings to date are variable across different contexts. ¹⁵ , ²⁴

Existing studies on the psychological impact of early detection programs have mostly used PROMs measuring general distress, particularly the State Trait Anxiety Inventory, often with instructions adapted to the T1D early detection context. While selection of similar measures across studies supports interstudy comparability, these general measures may not tap into context‐specific forms of distress, such as anticipatory anxiety, uncertainty about progression and the cumulative psychological impact of long‐term glycaemic surveillance. Newly designed PROMs are needed, being informed by experiences of people participating in early detection programs. PROM development should be co‐designed and user‐tested with children, adolescents and adults (including siblings and caregivers) to ensure face validity, cultural resonance and low burden. Indeed, there is an urgent need for valid measures to assess the psychological burden experienced not only by parents but also by children and people of all ages undergoing long‐term autoantibody monitoring.

Targeted research and clinical care efforts are also needed to strengthen psychosocial support for people with early‐stage T1D, particularly for individuals vulnerable to heightened psychological distress (e.g., individuals with limited education, prior depression, or from ethnic minority groups ¹⁹ , ²¹ , ²⁵ ). The autoantibody detection process itself has psychosocial challenges, including the communication of detection options and outcomes, informed decision making, risk perception, re‐measurement to confirm autoantibodies and dealing with uncertainty and anxiety. These considerations underscore the importance of embedding early detection pathways within a broader framework that integrates psychosocial care, to support: (1) informed participation and decision making; (2) understanding and coping with outcomes; and (3) ongoing monitoring. Across these phases, person‐centred and stigma‐free communication is critical.

4. LANGUAGE MATTERS

Language is powerful, ²⁶ influencing how people feel about themselves and their health as well as their engagement in health directed behaviours. ²⁷ , ²⁸ How healthcare professionals (HCPs) communicate impacts the way people with diabetes experience health and navigate healthcare. ²⁷ , ²⁹ Recognising the potential for language to reinforce harmful or stigmatising beliefs, the international #LanguageMatters movement and the international consensus and #EndDiabetesStigma Pledge advocate for the use of ‘accurate, respectful, inclusive, non‐judgmental, and strengths‐based language, messaging, and imagery when communicating with or about people with diabetes’. ²⁷ These principles can be similarly applied in the context of T1D early detection. Indeed, on behalf of the EDENTI1FI consortium, Vercauteren has recently encouraged clinicians and researchers working specifically in T1D early detection to adopt person‐first, comprehensible and non‐stigmatising language. ³⁰

Table 1 presents a summary of (non‐)preferred terminology (and associated rationales), drawing on relevant broader diabetes language recommendations ²⁶ as well as those specific to T1D early detection. ³⁰ While some language practices (e.g., person‐first language and avoiding the reduction of early detection to tests and results) represent relatively clear substitutions, language considerations in this area are evolving and further reflection on optimal communication is warranted, as discussed below.

TABLE 1.

Language matters in early detection of T1D.

Instead of	Use …	Because …
‘Patient’	‘Person’/‘person with early‐stage T1D’	‘Patient’ reduces individuals to a diagnosis and reinforces healthcare power imbalances, positioning people with diabetes as passive recipients of care. ‘Person’ emphasises identity beyond diabetes and acknowledges that the day‐to‐day work of living with diabetes occurs predominantly outside the healthcare system
‘Testing’	‘Measurement’, ‘assessment’ or ‘detection’	‘Testing’ implies judgment and a pass / fail outcome, rather than obtaining information to assist action
‘Screening for T1D’	‘Early detection of T1D’ or ‘screening for autoantibodies’	More neutral and precise terminology
‘Re‐screening’ or ‘re‐testing’	‘Confirmation measurement’	Neutral and precise terminology, see also ‘testing’ and ‘screening’
‘Metabolic testing’	‘Metabolic staging’	Neutral and precise terminology, see also ‘testing’
‘At risk of diabetes’/‘being at risk’	‘Having early‐stage T1D (stage 1 or 2)’ or ‘having increased genetic risk’	The term ‘being at risk’ may induce a false sense of reassurance about the course of events where early beta‐cell loss is identified (typically progressing to clinical stage 3 T1D) Furthermore, describing individuals as ‘being’ at risk conflates identity with health status (i.e., ‘having’ a certain risk/condition)
‘Increased risk of T1D’	‘Single autoantibody with uncertain trajectory’ or ‘increased genetic risk’	As above. Neutral, precise language recommended
‘Pre‐diabetes’	‘Early‐stage T1D’	‘Pre‐diabetes’ is commonly used in relation to type 2 diabetes and therefore risks conflating distinct conditions (trajectories, monitoring and management approaches). It may also unjustifiably foreground a focus on (the role of behavioural factors in) risk reduction

Note: Using accurate, respectful, non‐judgmental and person‐first language supports clearer communication and reduces stigma. Adapted from the ‘Our Language Matters’ position statement ²⁸ and EDENTI1FI consortium, ³⁰ the following suggestions reflect consensus recommendations for terminology in early detection of T1D.

4.1. Early detection vs. screening

Peer‐reviewed literature describes early diagnosis as ‘screening for T1D’. While this aligns with population‐based study terminology, ³¹ the phrase can misrepresent the full pathway when used with families. For expectation management, ‘early detection of T1D’ more accurately captures the continuum from initial autoantibody measurement to confirmation and metabolic staging. Phase‐specific terminology—measurement, confirmation, staging—avoids misunderstandings, particularly given that over 90% of screened individuals have a negative initial measurement. ¹⁵

4.2. At risk or pre‐diabetes vs. having early‐stage T1D

The phrase ‘being at risk’ can blur the line between identity and health status and may falsely reassure families despite the high progression rate once early beta‐cell loss is established. ⁴ , ³⁰ Terms such as ‘early‐stage T1D’ or ‘single autoantibody with uncertain trajectory’ more accurately describe physiological states. Insights from genetic counselling also support the use of ‘chance’ rather than ‘risk’, as ‘risk’ may evoke alarm or imply imminent harm. In contrast, ‘chance’ is perceived as neutral and supports clearer understanding and more autonomous decision making.

4.3. Symptomatic and clinical stage vs. stage 3

Stage 3 T1D is sometimes referred to as ‘symptomatic’, while its key hallmark is confirmed hyperglycaemia that may or may not be paired with symptoms. ³⁰ Similarly, ‘clinical T1D’ may imply that monitoring is unnecessary until symptoms appear, which is inconsistent with early detection guidelines recommending ongoing engagement before stage 3. ⁷ Neutral, descriptive staging supports accurate expectations and reduces misinterpretation.

Accuracy, acceptability and resonance of specific terms shape how individuals and families interpret information, make decisions and ultimately experience early‐stage T1D. Embedding Language Matters, and co‐designing terminology and communication resources with community can reduce stigma, foster trust and strengthen support across the early‐stage T1D pathway.

5. DECISION MAKING ABOUT SCREENING

To make an informed decision, concise information on what autoantibody screening can and cannot offer, and communication of probabilities in a way that supports realistic expectations, is necessary. ³² Acknowledging health decisions are shaped not just by medical facts and clinical recommendations, but by mental models: the internal stories, values and beliefs individuals use to make sense of T1D risk, progression and early detection is important. ³³ A key element of informed decision making is the alignment of perceived benefits and risks of a decision with one's own values and beliefs. ³⁴ , ³⁵ Training of HCPs should emphasise tailored, values‐based communication that prioritises individual family needs, values and experiences while building trust, transparency and shared decision making capacity. This approach acknowledges the ethical dilemmas, professional biases and discomfort with uncertainties, and community influences accompanying T1D early detection. ³⁶ Decision aids and consent materials should be co‐designed with community (including adolescents) and iteratively user‐tested for comprehension across literacy levels and languages.

The decision to screen for autoantibodies is typically made in the absence of symptoms and therefore differs psychologically from most diagnostic testing. Counselling at this stage should focus on enabling an informed and preference‐sensitive choice rather than promoting screening participation. Screening is often (inaccurately) framed as a preventive measure, for example, in the context of type 2 diabetes, some forms of cancer, as well as diabetes‐related complications. Yet, while early detection is essential for timely intervention and optimal outcomes, screening for autoantibodies itself is rarely a preventative strategy. This problem of equating screening with prevention may be compounded by the associated (and stigma‐fuelling) misconception that diabetes (in any form) is caused by unhealthy behaviours and due to individual responsibility. ²⁷ Such misunderstandings may distort expectations of the purpose and benefits of early detection and monitoring.

Furthermore, for families considering autoantibody screening, fears of being labelled or misunderstood following a positive result may act as a deterrent. Parents may worry about the psychological consequences for their child (e.g., feeling ‘different’ or ‘defective’) or for themselves (e.g., guilt or self‐blame), as well as the possibility of discrimination or differential treatment from others (e.g., increased difficulties accessing health or disabilities insurance). Addressing potential stigma through sensitive, strengths‐based communication and embedding screening efforts within broader initiatives to reduce diabetes stigma represent important but underexplored needs.

Psychologists contribute by designing pathways and communication materials. Trained teams can then assess readiness, identify vulnerabilities and support families with making informed choices. Developing adaptive narratives enables families to explain screening to children and wider networks in ways that match developmental needs and family dynamics. ³⁷ We know little about what children currently understand about early‐stage T1D and monitoring. Families will vary in the way this is framed to children, so how best to explain early‐stage T1D to their children is warranted. Co‐design with children and adolescents can identify age‐appropriate metaphors, visuals and explanations that reduce anxiety and support autonomy. ³⁸

Mental models vary between families who have experience with T1D vs. families without prior encounters with T1D. In both the TEDDY and ASK study, a large proportion of parents of children, particularly those without a relative with T1D, underestimated their child's risk. ¹⁹ , ³⁹ Inaccurate risk perception is associated with more anxiety. ¹⁹ , ⁴⁰ Without intervention or re‐education, risk perception accuracy tends to decline over time. ⁴¹ Gaps in mental models can foster confusion, fear, stigma, or mistrust, leading to missed opportunities for early care. ³³ Families familiar with T1D may have more accurate, and emotionally driven understandings rooted in past experiences rather than probabilistic reasoning. ¹⁷ Communicating about T1D early detection should therefore align with and reshape mental models, exploring individual preferences, for example, the desire for early information and preparedness versus the wish to avoid prolonged uncertainty or medicalisation. Therefore, tailored communication is crucial, especially concise information for those with high anxiety or low tolerance for uncertainty. ⁴² Transparent discussion of risk and uncertainties can enhance trust and reduce later decisional regret. Genetic counselling research has shown that psychologists safeguard autonomy, respect ‘the right not to know’, and help families make informed choices about complex familial and autoimmune risk concepts. ⁴³ Risk communication should rely on absolute numbers and consistent reference frames, avoiding relative risk increases or immunological detail that may be difficult to interpret. ⁴⁴ Individuals and families often conflate the likelihood of receiving a positive autoantibody result (about 8% in those with a first‐degree relative), ⁴ and only in about 0.3% of participants from the general population, ⁴² with the likelihood of developing T1D once autoantibodies have been detected. Counselling should explicitly separate these concepts ¹⁸ to help families anticipate the emotional meaning of testing in their specific context.

Equally important is the explicit inclusion of non‐participation as a valid option. Choosing not to be screened should be framed as a legitimate decision, particularly given the absence of guaranteed prevention and the potential psychological burden associated with risk knowledge. Co‐designed materials should present non‐participation neutrally, including how to re‐enter the pathway later if circumstances or preferences change.

In the early detection pathway, families must manage multiple layers of uncertainty: probability (likelihood and timing of T1D), ambiguity (unclear or conflicting information) and complexity (understanding disease mechanisms and interventions). ⁴⁵ Such uncertainties provoke a range of cognitive, behavioural and emotional reactions that influence mental models, screening attitudes and health decisions. Research from genetic screening shows that there are individual differences in tolerance for uncertainty, affecting willingness to engage in screening. Some prefer ‘knowledge, even if uncertain’, while others avoid information that does not lead to actionable outcomes. ⁴²

In T1D families, parents make most screening decisions, introducing further challenge. ⁴⁶ Provider recommendations, the child's preferences as well as familial and emotional factors all influence decisions, sometimes more strongly than clinical advice. ⁴⁶ How these dynamics impact islet autoantibody screening decisions has not been explored. Likewise, the factors influencing adults' willingness to participate in T1D screening have yet to be systematically investigated.

Fear‐based messaging is often used in health promotion to motivate increased screening uptake, yet may trigger anxiety and distrust, leading to disempowerment. Indeed, past diabetes awareness campaigns have been identified as stigmatising and distressing. ²⁷ In T1D early detection, promoting actionability messages and emphasising practical benefits (e.g., reducing risk of DKA at onset) may be more appropriate, but could also remain triggering or coercive. However, the field lacks consensus on messaging tone: how to motivate participation without triggering unnecessary worry is a challenge and largely depends on who the message is being delivered to. Acknowledging that the approach may differ for individualist versus collectivist cultures and to what extent the individual's and/or the collectivist values are the starting point is important.

Neutral, balanced information—presenting benefits, risks and limitations—is ethically essential but can be cognitively challenging for lay audiences. Parents or individuals may interpret ‘neutral’ messages as lacking recommendation and defer decision making. Thus, decisional support tools may be needed. At present, there is limited evidence on how neutral versus directive framing influences decisions about T1D detection participation, and the optimal balance between informed and strengths‐based messaging remains unclear. ⁴⁷

For low‐literacy populations, plain‐language and visual aids improve comprehension. More work is needed to develop and evaluate tailored communication materials for T1D early detection across literacy levels, age groups and languages. ⁴⁸ , ⁴⁹ Across the globe, the value of medical screening is understood in profoundly different ways. As per Table 2, screening for islet autoantibodies means different things to different countries and cultures. ⁵⁰ , ⁵¹ , ⁵² , ⁵³ , ⁵⁴ , ⁵⁵ , ⁵⁶ , ⁵⁷ , ⁵⁸ Cultural competency is essential for clinician‐researchers to embed in effective early detection programs worldwide. Collectivist and individualist cultures hold different views on health‐related decision making.

TABLE 2.

Recommendations for culturally responsive T1D early detection pathways.

Sociocultural evidence	Design choice	Improving acceptability	Enabling feasibility
Medicine is never culturally neutral	Adopt cultural humility training for clinician‐researchers	Enables care to be contextualised	Enhances quality
What empowers one group may alienate another	Build modular, adaptable screening pathways	Avoids one‐size‐fits‐all approaches	Enables scale‐up without cultural harm
Screening can be viewed as tempting fate, interfering with the Divine, or spiritually mandated depending on worldview	Offer values‐based framing of screening	Allows individuals to align screening with faith or spiritual beliefs	Reduces screening refusals based on religious or spiritual objections
Fear of diagnostic labels discourages participation	Use non‐pathologising language	Reduces stigma and anxiety	Improves uptake without increasing counselling burden
Fears about data misuse undermines participation	Implement data sovereignty and community‐controlled data agreements	Builds confidence in how information is used	Reduces legal and ethical barriers
Participatory action research improves outcomes	Use co‐design and iterative community feedback	Enhances relevance and trust	Improves program fit and efficiency
Religious traditions emphasise prevention and stewardship of the body	Co‐design faith‐congruent messaging with religious leaders	Validates religious values rather than competing with them	Encourages endorsement from trusted personnel
Collectivist cultures link decisions to family, elders, or faith leaders/Indigenous perspectives frame screening as collective and intergenerational	Co‐design screening as shared decision making rather than individualist participation/choice	Aligns with collectivist values	Improves reach and streamlines consent in family‐ and community‐ centred contexts
Indigenous‐led initiatives with elder involvement show higher acceptance	Formalise elder leadership roles in program design and delivery	Strengthens cultural sensitivity	Enhances local ownership and continuity

Incorporating community leaders, using culturally relevant examples and addressing specific spiritual concerns (e.g., fatalism versus empowerment) can further enhance understanding of early detection. ⁵⁰ Current T1D early detection communication strategies often use ‘one‐size‐fits‐all’ information formats, and therefore adaptation for specific communities is limited. ⁵⁹ , ⁶⁰ , ⁶¹

Hence, when designing screening campaigns, decision aids, consent materials and communication strategies across screening types and stages, psychological expertise should be embedded in order to ensure stigma‐free, culturally sensitive and accessible information across literacy levels based on socio‐ and psychological theory and behaviour change techniques. ⁶² , ⁶³

6. RESULTS: COMMUNICATION AND COPING

Therapeutic relationships grounded in trust are foundations of effective person‐centred care. ⁶⁴ , ⁶⁵ Person‐centred care means that individuals' values and preferences are meaningfully incorporated into care planning so realistic health goals are supported. In the context of early detection, communication must therefore be relational rather than transactional, recognising that autoantibody results can shift individuals or families from a sense of health to a new awareness of vulnerability. Early experiences in programs such as FR1DA show that families may experience heightened depressive symptoms at staging, ¹⁵ yet supportive communication and structured follow‐up might reduce these impacts over time. Such findings highlight the importance of early rapport‐building, anticipatory guidance and validation of emotional responses, which can be strengthened through co‐designed tools that reflect what families find clear, reassuring and culturally resonant.

Detection of autoantibodies often represents a psychological turning point, with some families experiencing shock, anxiety, hypervigilance, guilt or self‐blame related to genetic transmission. ¹⁸ , ⁶⁶ These responses are shaped by prior T1D experience, family narratives and the unexpected nature of the result, particularly in population‐based screening. Normalising emotional responses while clearly outlining what families can expect next is therefore critical.

Co‐designed resources, such as ‘what to expect’ explanation scripts, can help families anticipate common feelings, understand the purpose of monitoring and recognise when additional support may be helpful. Providing clear and consistent follow‐up pathways supports a sense of predictability and reduces the risk that distress may escalate into avoidance of care. ⁴⁵

Detection of a single autoantibody is associated with a modestly increased risk of progression (approximately 15%), meaning that most individuals will not develop stage 3 T1D. Communicating this explicitly can help counteract deterministic interpretations. In contrast, the presence of multiple autoantibodies indicates early‐stage T1D, with five‐year progression risks of approximately 44% in stage 1 and 75% in stage 2. ⁴ Counselling should consistently present both the likelihood of progression and the remaining uncertainty. Effective communication should present seroconversion information in a balanced and non‐deterministic way. Rather than focusing solely on numerical estimates, clinicians should emphasise what is known and what remains uncertain, using absolute numbers, neutral terminology and consistent reference frames. This approach supports accurate understanding while mitigating unnecessary alarm. It also supports families with higher uncertainty intolerance, who may benefit from structured explanations of the follow‐up process and opportunities to ask questions.

Families' experiences and communication needs vary widely, so healthcare teams must remain attentive to contextual factors such as coping styles, cultural or spiritual beliefs, past healthcare experiences and health literacy levels. Families from minority backgrounds or with lower health literacy may face additional barriers to interpreting results or navigating monitoring schedules. ¹⁹ , ²¹ , ²⁵ Applying systemic and family‐centred frameworks can help teams recognise how family dynamics influence coping and communication, and can guide the tailoring of explanations, pacing and support strategies. ⁶⁷ These approaches also help identify when family tensions, differing preferences, or practical barriers may hinder engagement.

Psychologists can provide teams with skills for clear, stigma‐free communication that acknowledges fears while promoting autonomy and resilience. Training delivered through workshops, consultations or webinars equips HCPs to recognise distress, respond with empathy and adapt to family coping styles, prior experiences and cultural contexts. Equipping teams with semi‐structured discussion tools and conversation frameworks facilitates sensitive communication that minimises harm and builds trust. Early assessment and triage (along with ongoing monitoring) can ensure that early signs of distress are identified and appropriate intervention is provided. A stepped‐care approach, ranging from ‘light‐touch’ psychoeducational interventions through to more intensive, individualised therapies, recognises the individual needs of screening while balancing limited resources.

Families need support in coping with the uncertainty of seroconversion timing and probability. Cognitive‐behavioural approaches may assist families in managing uncertainty, anxiety and behavioural changes such as glucose monitoring. ⁶⁸ , ⁶⁹ While psychologists are critical to early detection programs, their scarcity highlights the importance of equipping other HCPs to recognise distress, respond appropriately and connect individuals and families with further support.

Social workers or specialist diabetes nurses can play a key role in addressing family dynamics, social determinants and linking families to community resources. Clinician‐researchers with lived experience of T1D or peer networks could also offer valuable insight but may hold biases influencing screening, prevention, or treatment framing. ⁶⁵

7. ENGAGEMENT IN FOLLOW‐UP MONITORING AND RE‐MEASUREMENT

The major benefit of screening for autoantibodies—preventing DKA at stage 3 T1D diagnosis—depends on sustained engagement in follow‐up monitoring. For many individuals, this means attending periodic measurements and appointments over months or years. Limited evidence from existing screening programmes shows that some families find it challenging to maintain ongoing attendance for confirmatory tests or monitoring appointments. ¹⁷ Reported barriers include concerns about performing blood tests, time constraints, emotional discomfort such as worry or stress, and misunderstandings about personal risk or the purpose of continued monitoring. ¹⁷

From a psychological perspective, early and clear communication about what autoantibody detection means in lay language is essential. A key element is ensuring that diagnostic uncertainty is not confused with prognostic uncertainty. Families may benefit from a structured communication approach commonly used in genetic counselling—namely, clearly outlining ‘here's what we know, and here's what we don't know’. Such messaging supports transparency and reduces the likelihood of misinterpreting autoantibody detection as current T1D needing insulin treatment. Rather, detection implies the need for structured follow‐up, education, and psychosocial support to stay prepared. Presenting monitoring as a proactive, supportive process—rather than as a sign of imminent illness—can help individuals and families understand its role in early identification of metabolic shifts and timely treatment. Framing monitoring to maintain preparedness rather than as constant surveillance may reduce anxiety and promote a sense of control.

Structured monitoring also has emotional implications. For some individuals and families, regular follow‐up provides reassurance and continuity, reinforcing the rationale for early detection discussed at the decision stage. For others, repeated measurements may prolong uncertainty or heighten feelings of vulnerability. These varied responses highlight the importance of integrating person‐centred psychosocial assessment and support into monitoring pathways.

Although early detection guidelines recommend incorporating psychosocial monitoring using validated PROMs, ³ this remains an underdeveloped area. Existing examples—such as adaptations of the State Trait Anxiety Inventory ⁷⁰ and Patient Health Questionnaire‐9 ¹⁵ —have largely focused on caregivers and may not capture screening‐specific experiences such as guilt, anxiety or uncertainty. ²⁵ There is a need to design PROMs tailored to the early‐stage T1D context. Targeted items may also help guide conversations during the monitoring visits. Psychologists have an important role in co‐designing validated, inclusive, sensitive measures that developmentally and culturally reflect early‐stage T1D psychosocial experiences without increasing burden. ³ , ⁷

A thorough initial psychosocial assessment is particularly important. Understanding an individual's and family's typical coping styles, sources of support, communication and information preferences, and responses to uncertainty provides a foundation for tailoring guidance throughout the monitoring process. Encouraging families to reflect on how they typically manage uncertainty—and how these strategies may or may not serve them in this new context—can help identify strengths and anticipate challenges.

Psychosocial monitoring can support early triage by helping to ensure that individuals and families who require additional psychological support are referred in a timely manner. Based on general clinical guidelines, referral to a mental health professional is indicated when the following symptoms persist for more than 2 weeks (and further psychological support is desired):

• significant distress (e.g., excessive guilt, anxiety, panic attacks, depressive symptoms) which can be assessed through clinical interview and/or the use of standardised measures with relevant clinical thresholds;

• concerning changes in family dynamics (e.g., overprotective behaviour, emotional projection, interpersonal conflicts);

• coping strategies with potential negative physical or psychosocial impact, for example, alcohol use, disordered eating behaviours impaired daily functioning (e.g., difficulties at school, work, or in social life);

• pathway specific triggers, for example, difficulty coping with uncertainty about prognosis and related behavioural changes;

• for children: (rather than emotional symptoms) new or escalating behavioural changes, for example, withdrawal, irritability,

Special attention is warranted for people with pre‐existing psychological conditions.

Although no guidelines specify psychosocial monitoring intervals for those with one or more autoantibodies, broader diabetes psychosocial guidelines offer a useful framework. These recommend assessments at the initial visit, periodic reviews and additional monitoring during times of change in diagnosis, treatment, or life circumstance. ADA guidelines emphasise reassessment following significant changes and suggest monitoring at 6 months intervals thereafter; ISPAD guidelines similarly call for ongoing psychosocial monitoring for youth, reflecting the high prevalence of psychological symptoms and the importance of integrating psychosocial support into routine care. Drawing on these frameworks, we propose a pragmatic psychosocial monitoring schedule of:

• a baseline psychosocial assessment at the time of autoantibody detection,

• an early follow‐up at 1–3 months, and

• regular psychosocial reviews every 6–12 months, with additional reviews at follow‐up visits triggered by early‐stage progression, major life changes or pre‐existing mental health concerns

Where appropriate, PROMs should be completed before scheduled appointments to support triage and enable clinicians to focus on concerns that families identify as most important. To support implementation, we provide expanded guidance on practical strategies for conversations about psychosocial aspects (Tables 3 and 4 and Appendix S1). These include the use of brief pre‐appointment reflection questions to help individuals and families identify what matters most to them and set priorities for their discussions. Discussion tools and semi‐structured guides for HCPs could offer prompts to explore the impact of uncertainty, distress, coping strategies, strengths and communication or information preferences. The examples provided in Tables 3, 4 and Appendix S1 are not validated PROMs nor formal assessment instruments; rather, illustrative questions and tools intended to support clinicians in structuring conversations and incorporating psychosocial reviews during monitoring and provide a foundation for community involvement activities. These examples demonstrate practical ways in which uncertainty communication and strengths‐based assessment can be operationalised while early‐stage T1D‐specific PROMs are being developed.

TABLE 3.

Example of pre‐appointment reflection questions to help individuals and families identify what matters most, surface concerns, and support the clinical team in tailoring the consultation.

What matters most right now	‘Please list up to three priorities for your upcoming appointment (e.g., understanding results, planning next steps, managing worry, navigating practicalities like blood draws)’ ‘If we could do one thing today that would be most helpful for you, what would it be?’
Understanding your results	‘What feels clear to you?’ ‘What feels uncertain or confusing?’
Emotional snapshot	‘How uncertain do you feel about what comes next?’ ‘How confident do you feel in the plan for follow‐up?’ ‘In the past two weeks, how often have your feelings about early detection made it hard to sleep, work/study, or parent?’
Family interaction	‘Are you as a family all on the same page or are there different views’

TABLE 4.

Semi‐structured psychosocial conversation guide for clinicians to provide consistent, compassionate language.

Conversation domains	Semi‐structured psychosocial conversation starters
Information preferences & shared decision making	‘How detailed would you like the explanation today?’ ‘Do you prefer a brief overview, or shall I provide more detail, with visuals or numbers?’
Using the ‘know’/‘don't know’ framework	What we know (diagnostic) ‘You have stage 1 type 1 diabetes at present’. ‘The autoantibody result tells us the immune system response has changed’ What we don't know yet (prognostic) ‘There is a chance of developing diabetes in the future, and the size of that chance depends on factors like number of autoantibodies’ ‘You have stage 2 type 1 diabetes at present and your glucose levels are in target range. You will need insulin treatment in the future. We don't know when this will be exactly. Three out of four people in your situation will need insulin within 5 years. For now, we continue with 6‐monthly monitoring’
Validating and normalising emotional responses	‘I can imagine this result may bring up a lot of feelings’. ‘Many people need time to take in information like this’
Exploring emotional responses	‘What is hardest for you about getting these results?’ ‘How has this affected sleep, focus at school/work, or family life?’
Coping strategies—what helps, what doesn't	‘When things are uncertain, do you seek information, plan ahead, or take it day‐by‐day?’ ‘Which of these will help here—and which might make it harder?’
Strengths and supports	‘Who and/or what has helped your family through uncertain times in the past?’
Exploring practical and emotional barriers	‘How important do you find these ongoing appointments?’ ‘What might make it hard /easier to keep monitoring appointments?’ (i.e. time, transport, cost, childcare, worries, blood draw)

Note: Please find a more detailed table in Appendix S1.

Despite early detection programmes only reach their potential when families and individuals are engaged in the monitoring until diagnosed with stage 3 T1D, literature on this topic is scarce and has focused exclusively on adult caregivers. Older children and adolescents are likely to have their own views about ongoing participation in medical monitoring. Future research should address practical, developmental, emotional and cultural factors that affect engagement in continued medical monitoring.

8. IMPLICATIONS FOR OTHER TYPES OF DIABETES

Undoubtedly, further research and clinical innovation are urgently needed to strengthen psychosocial care for individuals and families navigating early detection and monitoring of T1D. Yet while guidance for the psychosocial support of people with diabetes (of any type) is comparatively well established, ⁷¹ there remain substantial implementation gaps and resourcing limitations that constrain access to psychosocial care in practice (at diagnosis and beyond). Furthermore, the communication of a diabetes diagnosis—whether early‐stage T1D or stage 3 T1D, type 2, or gestational diabetes—remains under‐researched and poorly evidenced. There are growing calls for person‐centred and stigma‐free communications to raise awareness of all types of diabetes (including associated risks, screening approaches and complication prevention). ²⁷ Lessons learned from this emerging field of T1D early detection could therefore inform improved communication practices and psychosocial care models across diabetes types.

9. CONCLUSIONS

Early detection of T1D could offer medical benefits, including more timely treatment initiation and a reduced risk of DKA. In an informed decision making process, recommendations and information should be aligned with individual beliefs, previous experiences and values. Non‐participation should be offered as a valid option. On the early detection pathway, interdisciplinary collaboration, sensitive communication and integrating psychosocial care are necessary. Figure 1 presents specific recommendations. Significant gaps remain as per Table 5 highlighting the need for further research. Embedding psychosocial support into early diagnosis pathways may not only enhance family experience but also provide a transferable model for person‐centred care across all forms of diabetes. To optimise acceptability, equity and trust, community involvement should be resourced and formalised—through advisory groups, co‐design activities and compensated contributors—across pathway design, materials, monitoring models, and evaluation. For policymakers, acceptability and trust increase when programs combine clear, low‐burden workflows; transparent, stigma‐free communication; and embedded psychosocial support, with additional resourcing for identified high‐need subgroups.

TABLE 5.

Critical gaps in the psychosocial dimensions of early T1D dimension.

Psychological impact

Limited evidence about … Impact of screening and early detection of autoantibodies in children, adolescents, and adults and the longitudinal emotional trajectories over years of monitoring … progression experiences and psychological responses among people who are not of white European ancestry … whether participation in early detection and monitoring reduces psychological burden at stage 3 diagnosis

Need for context‐specific PROMs to capture distress, such as anticipatory anxiety, uncertainty about progression, and the cumulative psychological impact of long‐term glycaemic surveillance This includes development of PROMs for individuals that participate in the early detection pathway themselves, especially for children and adolescents, incorporating developmental considerations

Decision making

Limited evidence of … how neutral versus directive framing influences decisions about T1D detection participation, and the optimal balance between informed and strengths‐based messaging remains unclear … children's comprehension of early‐stage T1D and monitoring; guidance for explaining early detection to children is lacking … factors influencing adults' willingness to participate in screening remain under‐studied … parent–child–clinician relational dynamics in decision making

Need for communication materials and resources tailored across literacy levels, age groups, languages, and cultural contexts

Coping

Targeted research and clinical care efforts to strengthen psychosocial support for people with early‐stage T1D

Follow‐up monitoring

Very limited research on practical, emotional and cultural factors that affect engagement in long‐term medical monitoring

Equity & access

Limited understanding of experiences among Indigenous communities, ethnic minority families, migrant families, rural/remote communities, and low‐income groups

Lack of models for culturally safe early detection

Systems & workforce

Limited training for clinicians in communicating uncertainty, identifying distress, and using person‐centred language

Lack of clarity about who is responsible for psychosocial monitoring within teams

FUNDING INFORMATION

This research received no specific grant from any funding agency in the public, commercial or not‐for‐profit sectors. EH‐T is supported by the core funding to the Australian Centre for Behavioural Research in Diabetes provided by the collaboration between Diabetes Victoria and Deakin University.

CONFLICT OF INTEREST STATEMENT

NH: member of an Advisory board of Sanofi. PW, HJA, CF and GN: Employees of Diabeter, an independent clinic that was acquired by Medtronic. The research presented here was independently performed, and there are no conflicts of interest. GN: Independently involved in a producer‐initiated study with Inreda Diabetic B.V., for which she receives no renumeration other than (co‐)authorship. Industry research discounts (Dexcom; appr. EUR 5000 on the purchase of sensors) and speaker fees (Dexcom, Sanofi) were paid directly to employer Radboudumc. HJA: Member of the Diabeter (international) board. Membership of advisory boards (NovoNordisk, Eli Lilly, Dexcom, Sanofi) and invited lectures; paid to employer Diabeter and not the individual. No fees received for advisory board Innodia MELT‐ATG trial, an investigator‐initiated and driven trial. MdW: received speaker fees from Medtronic and Sanofi, directly paid to employer Amsterdam UMC. The research presented here was performed independently, and there are no conflicts of interest. LYK: received speaker fees from Merck and Sanofi. The research presented here was performed independently, and there are no conflicts of interest.

POSITIONALITY

As authors of this review, we contributed to, or were active participants in, a workshop on the psychological aspects of type 1 diabetes early detection, held at the 29th Annual Psychosocial Aspects of Diabetes (PSAD) Scientific Meeting (2025). We acknowledge that our identities, including our lived, loved and learned experiences of diabetes, shape the perspectives presented in this review. Our multidisciplinary authorship team, comprising men and women of diverse ages and career stages, brings expertise across research, healthcare, advocacy and lived experience of having, or caring for someone with, type 1 diabetes. We recognise that our demographic backgrounds, professional expertise and positions of privilege influence how we experience, understand and interpret the issues discussed.

Supporting information

Appendix S1: The information in this table can support early triage by helping to ensure that individuals and families who require additional psychological support are referred in a timely manner. In the absence of no access to or not engaging with an appropriate mental health professional, there is additional information in this table to guide health professionals with delivering adequate psychosocial support to individuals and families.