Development and content validation of the Healthcare Transition Outcomes Inventory for young adults with type 1 diabetes

Abstract Background The literature on the specification and measurement of the outcomes of the healthcare transition from pediatric to adult centered-care is scarce and methodologically weak. To address these gaps, we conducted a series of studies to develop a multidimensional, multi-informant (young adults, parents, and healthcare providers) measure of healthcare transition outcomes for young adults with type 1 diabetes (T1D), the Healthcare Transition Outcomes Inventory (HCTOI). The current study describes the development and refinement of the HCTOI item pool. Methods Following Patient Reported Outcomes Measurement Information System (PROMIS) standards, the research team conducted qualitative interviews to define six content domains of healthcare transition outcomes from the perspectives of multiple stakeholders, developed an initial item pool of the HCTOI based on the six domains, analyzed expert item ratings and feedback for content validation, and conducted cognitive interviews with informants (patients, parents, and healthcare providers) for further item pool refinement. Results Qualitative findings revealed six healthcare transition outcome domains: 1) Biomedical markers of T1D control; 2) Navigation of a new health care system; 3) Possession of T1D self-management skills and knowledge; 4) Integration of T1D care into emerging adult roles; 5) Balance of parental involvement with autonomy; and 6) Attainment of T1D “ownership.” An initial pool of 88 items focused on the extent to which a young adult with T1D is successful on each of the six domains. Experts rated all content domains and all but six items as relevant. In addition to suggesting additional items, experts were concerned about the length of the measure, response burden, and whether every informant type would have sufficient knowledge to rate items in particular content domains. Cognitive interviews resulted in retaining all six content domains, but dropping some items and yielded fewer items for the healthcare provider version (47 items versus 54 items for the young adult- and parent-versions). Conclusions Expert review and cognitive interviews confirmed that all six domains of HCT outcomes were relevant and both procedures resulted in retaining a sufficient number of clear and representative items for each content domain. The HCTOI represents the first multi-informant, rigorously developed item pool that comprehensively measures the multiple components of the transition from pediatric to adult specialty healthcare.

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Validation of the Healthcare Transition Outcomes Inventory for Young Adults With Type 1 Diabetes

Journal of Pediatric Psychology ◽

10.1093/jpepsy/jsaa051 ◽

2020 ◽

Vol 45 (7) ◽

pp. 767-779

Author(s):

Jessica Pierce ◽

Jobayer Hossain ◽

Anthony Gannon

Keyword(s):

Quality Of Life ◽

Type 1 Diabetes ◽

Young Adults ◽

Glycemic Control ◽

Psychometric Properties ◽

Diabetes Distress ◽

Transition Outcomes ◽

Healthcare Transition

Abstract Objective We recently developed and content validated the Healthcare Transition Outcomes Inventory (HCTOI), a stakeholder vetted, multidimensional measure of the outcomes of the transition from pediatric to adult healthcare for young adults (YA) with type 1 diabetes (T1D). In this study, we aimed to evaluate the psychometric properties of the HCTOI. Methods We collected and analyzed cross-sectional data from 128 YA (18–25 years old) with T1D to evaluate the psychometric properties of the HCTOI. We conducted confirmatory factor analysis (CFA), item analysis, and examined reliability and validity in relation to measures of quality of life, diabetes distress, regimen adherence, and glycemic control. Results CFA supported a five-factor solution: integration of T1D into emerging adult roles, balance of parental support with T1D autonomy, establishing and maintaining continuity of care, forming a collaborative patient–provider relationship, and ownership of T1D. We reduced the HCTOI from 54 to 34 items. The HCTOI demonstrated adequate internal consistency (α’s = 0.62–0.87) and significant correlations demonstrated construct (quality of life, diabetes distress) and criterion validity (adherence, glycemic control). Conclusions The HCTOI demonstrated promising initial psychometric properties. As the first measure of the multiple dimensions of healthcare transition outcomes, the HCTOI provides a means to examine longitudinal relations between transition readiness and outcomes and to assess the efficacy or effectiveness of interventions and programs designed to improve the transition process for YA with T1D.

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The Perceptions of Patients, Their Parents and Healthcare Providers on the Transition of Young Adults With Type 1 Diabetes to Adult Services in the West of Ireland

Journal of Adolescent Health ◽

10.1016/j.jadohealth.2016.10.262 ◽

2017 ◽

Vol 60 (2) ◽

pp. S40 ◽

Cited By ~ 1

Author(s):

Orla M. Walsh ◽

Miriam Wynne ◽

Mary Clare O’Hara ◽

Maire O’Donnell ◽

Rosemary Geoghegan

Keyword(s):

Type 1 Diabetes ◽

Young Adults ◽

Healthcare Providers ◽

The West ◽

Adult Services ◽

West Of Ireland

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A national survey of transition from pediatric to adult healthcare providers for adolescents and young adults with type 1 diabetes: perspectives of pediatric endocrinologists in Korea

Annals of Pediatric Endocrinology & Metabolism ◽

10.6065/apem.2040194.097 ◽

2021 ◽

Author(s):

Jae Hyun Kim ◽

Jae-Ho Yoo

Keyword(s):

Type 1 Diabetes ◽

Young Adults ◽

National Survey ◽

Healthcare Providers ◽

Adolescents And Young Adults

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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

HRB Open Research ◽

10.12688/hrbopenres.12803.2 ◽

2018 ◽

Vol 1 ◽

pp. 8 ◽

Cited By ~ 1

Author(s):

Deirdre M.J. Walsh ◽

Lisa Hynes ◽

Mary Clare O'Hara ◽

Jenny Mc Sharry ◽

Séan F. Dinneen ◽

...

Keyword(s):

Systematic Review ◽

Type 1 Diabetes ◽

Young Adults ◽

Young Adult ◽

Service Providers ◽

Phase 1 ◽

Self Management ◽

Theoretical Frameworks ◽

Complex Behaviour

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 (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. 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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Supporting self-management and clinic attendance in young adults with type 1 diabetes: development of the D1 Now intervention

Pilot and Feasibility Studies ◽

10.1186/s40814-021-00922-z ◽

2021 ◽

Vol 7 (1) ◽

Author(s):

Eimear C. Morrissey ◽

Bláthín Casey ◽

Lisa Hynes ◽

Sean F. Dinneen ◽

Molly Byrne ◽

...

Keyword(s):

Type 1 Diabetes ◽

Young Adults ◽

Young Adult ◽

Behaviour Change ◽

Design Process ◽

Self Management ◽

Behaviour Change Techniques ◽

Support Worker ◽

High Blood Glucose

Abstract Background Self-management of type 1 diabetes (T1D) is complex and can be particularly challenging for young adults. This is reflected in the high blood glucose values and rates of clinic non-attendance in this group. There is a gap for a theory-based intervention informed by key stakeholder opinions to support and improve self-management in young adults with T1D. Purpose The aim of the work was to systematically co-develop an evidence-based and stakeholder-led intervention to support self-management and clinic engagement in young adults living with T1D in Ireland. Co-development was led by the Young Adult Panel. Methods The Behaviour Change Wheel was used to guide the development. Five evidence sources were used to inform the process. An iterative co-design process was used with the Young Adult Panel. Initial intervention components were refined and feasibility tested using qualitative methods. Results Environmental restructuring, education and training were selected as appropriate intervention functions. The co-design process, along with qualitative refinement and feasibility work, led to the final intervention content which consisted of 17 behaviour change techniques. The final D1 Now intervention consists of three components: a support worker, an agenda setting tool and an interactive messaging service. Conclusions The D1 Now intervention is now at pilot evaluation stage. Its transparent and systematic development will facilitate evaluation and future replications.

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My Baby Bird - Living With Type 1 Diabetes: A Phenomenological Analysis

American Journal of Health Sciences (AJHS) ◽

10.19030/ajhs.v3i4.7316 ◽

2012 ◽

Vol 3 (4) ◽

pp. 239-246

Author(s):

Catherine Aquino-Russell ◽

Roger Russell ◽

Allison Russell ◽

Catrina Russell

Keyword(s):

Type 1 Diabetes ◽

Young Adults ◽

Young Adult ◽

Lived Experience ◽

Phenomenological Study ◽

Family Members ◽

Phenomenological Analysis ◽

Adult Member ◽

Canadian Diabetes Association

“This is a life-changing experience for all of us. You have one child with diabetes and your whole family has diabetes” (Isenberger, 2009, p. 134). More than two million Canadians have diabetes; 10% live with type 1 diabetes, involving the pancreas not being able to produce insulin (Canadian Diabetes Association, 2009). The incidence of type 1 diabetes is greater than has previously been described (Karvonen et al, 2000). One longitudinal phenomenological study used interviews for data collection to uncover family members’ lived experiences when their children (aged 9-14) were diagnosed with type 1 diabetes (Wennick & Hallstrom, 2006, 2007; Wennick, Lundqvist, & Hallström, 2009). Interestingly, Balfe (2009) wrote, “young adults with type 1 diabetes are a “forgotten group” (p. 128). The purpose of our ongoing phenomenological research is to explore the experiences of young adults and their family members. We are having challenges recruiting potential participants (individuals and their family members) to write about and email their experiences living with or having a young adult member who lives with type 1 diabetes; however, we have one description of a lived experience written by a young adult which is so eloquent, that we wanted to share it with others. We have completed a Giorgi (2009; Giorgi & Giorgi, 2003) descriptive phenomenological analysis guided by the humanbecoming theory for nurses (Parse, 1998) and have related the findings to the literature. This paper includes a moving metaphorical illustration about what it is like for one young adult to live with type 1 diabetes.

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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

HRB Open Research ◽

10.12688/hrbopenres.12803.1 ◽

2018 ◽

Vol 1 ◽

pp. 8 ◽

Cited By ~ 1

Author(s):

Deirdre M.J. Walsh ◽

Lisa Hynes ◽

Mary Clare O'Hara ◽

Jenny Mc Sharry ◽

Séan F. Dinneen ◽

...

Keyword(s):

Systematic Review ◽

Type 1 Diabetes ◽

Young Adults ◽

Young Adult ◽

Service Providers ◽

Phase 1 ◽

Self Management ◽

Theoretical Frameworks ◽

Complex Behaviour

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.

Download Full-text