Strength in Numbers: an international consensus conference to develop a novel approach to care delivery for young adults with type 1 diabetes, the D1 Now Study

O’Hara, Mary Clare; Hynes, Lisa; O'Donnell, M; Keighron, C.; Allen, Gary; Caulfield, A.; Duffy, Ciara; Long, Michelle; Mallon, Madeleine; Mullins, Monica; Tonra, Garret; Byrne, Molly; Dinneen, Seán F.

doi:10.1186/s40900-017-0076-9

Cited by 16 publications

(15 citation statements)

References 26 publications

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“…Perhaps one of the largest examples of patient engagement in T1D research is the D1 Now study in Ireland (134, 135). This project recruited a young adult panel as co-investigators who were involved in writing grants, organizing a large international workshop, writing plain English summaries in journal articles and promoting the study using social media outlets.…”

Section: Patient-oriented Research Within the Field Physical Activitymentioning

confidence: 99%

Gaps in Knowledge and the Need for Patient-Partners in Research Related to Physical Activity and Type 1 Diabetes: A Narrative Review

2019

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Regular physical activity (PA) is a cornerstone in the management of complications associated with type 1 diabetes (T1D). Most national guidelines advocate for regular PA for persons living with T1D, however the evidence to support these recommendations has not be reviewed recently. Additionally, in an era of patient-centered care and patient oriented research, the role of patient partners in the area of PA and T1D interventions has never been explored. The purpose of this narrative review is to overcome these two gaps in the literature. Here we review selected epidemiological evidence and identify gaps in research that would add important information to guide practitioners and future guidelines. We also provide an overview of patient-oriented research projects co-developed with persons living with T1D. Significant gaps in the field include: (1) a lack of adequately powered prospective cohort studies using serial measures of PA and hard chronic disease end-points; (2) no multi-centered, highly powered, randomized controlled trials of PA, and long-term health outcomes; (3) little data on the role of new technologies to support PA-related behavior change, and (4) no trials that involved patients in the design and execution of PA-based clinical trials. This review provides a template for scientists and patient partners to develop future research priorities and agendas in the field.

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Section: Patient-oriented Research Within the Field Physical Activitymentioning

confidence: 99%

Gaps in Knowledge and the Need for Patient-Partners in Research Related to Physical Activity and Type 1 Diabetes: A Narrative Review

2019

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“…The D1 Now study team has demonstrated that it is both feasible and desirable to include a PPI panel of young adults with T1D in health research 27,29 .…”

Section: Discussionmentioning

confidence: 99%

“…Phase 4: Information sharing symposium and expert panel consensus meeting In June 2016, a 3-day event was organised in Galway, Ireland, entitled: 'Strength in Numbers: Teaming up to improve the health of young adults with type 1 diabetes' 29 . The overall aim of the Strength in Numbers event was to exchange knowledge and experiences among stakeholders to gain input into the D1 Now intervention development process.…”

Section: Phase 1: Formation Of a Young Adult Panel (Yap)mentioning

confidence: 99%

Embedding a user-centred approach in the development of complex behaviour change intervention to improve outcomes for young adults living with type 1 diabetes: The D1 Now Study

et al. 2018

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Type 1 diabetes (T1D) is an auto-immune condition which Background: requires intensive self-management. Diabetes self-management is challenging, especially during young adulthood. Effective interventions to improve outcomes for young adults (18-30 year olds) with T1D are needed. This paper describes the development of the D1 Now intervention, employing a user-centred approach to engage with stakeholders in parallel with the application of theory.Intervention development consisted of 4 phases: 1) the formation of Methods: a public and patient involvement (PPI) Young Adult Panel (YAP); 2) a systematic review to synthesise evidence regarding the effectiveness of interventions aimed at improving outcomes for young adults with T1D; 3) understand young adults' diabetes self-management behaviour through engagement with key stakeholders; and 4) an expert consensus meeting to discuss self-management strategies identified in Phase 1 and 3 that would form the core components of the D1 Now intervention.The YAP resulted in meaningful involvement between young adults, Results: researchers and service providers. The systematic review highlighted a lack of quality intervention studies. Qualitative findings highlighted how young adult self-management is driven by complex interactions between external resources, which influence capability, and motivation. The expert panel in Phase 4 highlighted focus areas to improve outcomes for young adults and implementation strategies. Subsequent to these 4 phases, 3 intervention components have been identified: 1) a key worker to liaise with the young adult; 2) an online portal to facilitate relationship building between staff and young adults; and 3) an agenda setting tool to facilitate joint decision-making.This study described the systematic development of an Conclusions: intervention underpinned by theoretical frameworks and PPI, and has identified components for the D1 Now intervention. The resulting intervention content will now be subject to an intervention optimisation process. Keywords

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“…In June 2016, a 3-day event was organised in Galway, Ireland, entitled: 'Strength in Numbers: Teaming up to improve the health of young adults with type 1 diabetes' 29 . The overall aim of the Strength in Numbers event was to exchange knowledge and experiences among stakeholders to gain input into the D1 Now intervention development process.…”

Section: Phase 4: Information Sharing Symposium and Expert Panel Consmentioning

confidence: 99%

“…Reflections on the user-centred approach within D1 Now intervention development Engaging with key stakeholders is recommended as best practice for effective intervention development 10,13 and researchers are increasingly encouraged to adopt a PPI framework within health research. The D1 Now study team has demonstrated that it is both feasible and desirable to include a PPI panel of young adults with T1D in health research 27,29 .…”

Section: Building Relationships Between Young Adults and Service Provmentioning

confidence: 99%

Embedding a user-centred approach in the development of complex behaviour change intervention to improve outcomes for young adults living with type 1 diabetes: The D1 Now Study

et al. 2018

Self Cite

View full text Add to dashboard Cite

Background: Type 1 diabetes (T1D) is an auto-immune condition which requires intensive self-management. Diabetes self-management is challenging, especially during young adulthood. Effective interventions to improve outcomes for young adults with T1D are needed. This paper describes the development of the D1 Now intervention, employing a user-centred approach to engage with stakeholders in parallel with the application of theory. Methods: Intervention development consisted of 4 phases: 1) the formation of a public and patient involvement (PPI) Young Adult Panel (YAP); 2) a systematic review to synthesise evidence regarding the effectiveness of interventions aimed at improving outcomes for young adults with T1D; 3) understand young adults’ diabetes self-management behaviour through engagement with key stakeholders; and 4) an expert consensus meeting to discuss self-management strategies identified in Phase 1 and 3 that would form the core components of the D1 Now intervention. Results: The YAP resulted in meaningful involvement between young adults, researchers and service providers. The systematic review highlighted a lack of quality intervention studies. Qualitative findings highlighted how young adult self-management is driven by complex interactions between external resources, which influence capability, and motivation. The expert panel in Phase 4 highlighted focus areas to improve outcomes for young adults and implementation strategies. Subsequent to these 4 phases, 3 intervention components have been identified: 1) a key worker to liaise with the young adult; 2) an online portal to facilitate relationship building between staff and young adults; and 3) an agenda setting tool to facilitate joint decision-making. Conclusions: This study described the systematic development of an intervention underpinned by theoretical frameworks and PPI, and has identified components for the D1 Now intervention. The resulting intervention content will now be subject to an intervention optimisation process.

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Strength in Numbers: an international consensus conference to develop a novel approach to care delivery for young adults with type 1 diabetes, the D1 Now Study

Cited by 16 publications

References 26 publications

Gaps in Knowledge and the Need for Patient-Partners in Research Related to Physical Activity and Type 1 Diabetes: A Narrative Review

Gaps in Knowledge and the Need for Patient-Partners in Research Related to Physical Activity and Type 1 Diabetes: A Narrative Review

Embedding a user-centred approach in the development of complex behaviour change intervention to improve outcomes for young adults living with type 1 diabetes: The D1 Now Study

Embedding a user-centred approach in the development of complex behaviour change intervention to improve outcomes for young adults living with type 1 diabetes: The D1 Now Study

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