Adult care providers’ perspectives on the transition to adult care for emerging adults with Type 1 diabetes: a cross‐sectional survey

Michaud, Sophie; Dasgupta, Kaberi; Bell, Lorraine; Yale, Jean‐François; Anjachak, N.; Wafa, Sarah; Nakhla, Meranda

doi:10.1111/dme.13627

Cited by 30 publications

(24 citation statements)

References 31 publications

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“…A number of barriers can prevent a successful transition from paediatric to adult healthcare systems and influence continued disease management and treatment compliance:Complex clinical needs or medical histories [7,[11], [12], [13], [14]];Reluctance of parents to reduce involvement in patient care [3,7,11,[14], [15], [16], [17]];Anxiety over expectations and levels of care in the adult care system [3,7,11,14,15,[18], [19], [20], [21]];Limited or inappropriate preparation for the adult care system [9,11,[22], [23], [24]];Familiarity with a paediatric setting and concerns over the lack of established relationship with adult care multidisciplinary teams (MDTs) [3,7,13,15,17,25,26];Reluctance of paediatric teams to pass responsibility to adult care MDTs [3,7,11,[13], [14], [15], [16],20];Lack of coordination of HCPs, between and within paediatric and adult care teams [3,7,9,11,16,19,27,28];Access to adult care specialists with specific disease experience [3,7,9,11,[13], [14], [15], [16],18,19,21,22,[29], [30], [31], [32]];Concerns over patients' disease management capabilities [13,16,17,20,23,33…”

Section: Introductionmentioning

confidence: 99%

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Transition of patients with mucopolysaccharidosis from paediatric to adult care

Lampe

McNelly

Геворкян

et al. 2019

Molecular Genetics and Metabolism Reports

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Mucopolysaccharidoses (MPS) are rare disorders associated with enzyme deficiencies, resulting in glycosaminoglycan (GAG) accumulation in multiple organ systems. As patients increasingly survive to adulthood, the need for a smooth transition into adult care is essential. Using case studies, we outline strategies and highlight the challenges of transition, illustrating practical solutions that may be used to optimise the transition process for patients with MPS disorders.Seven MPS case studies were provided by four European inherited metabolic disease centres; six of these patients transferred to an adult care setting and the final patient remained under paediatric care. Of the patients who transferred, age at the start of transition ranged between 14 and 18 years (age at transfer ranged from 16 to 19 years).While there were some shared features of transition strategies, they varied in duration, the healthcare professionals involved and the management of adult patients with MPS. Challenges included complex symptoms, patients' unwillingness to attend appointments with unfamiliar team members and attachment to paediatricians. Challenges were resolved by starting transition at an early age, educating patients and families, and providing regular communication with and reassurance to the patient and family. Sufficient time should be provided to allow patients to understand their responsibilities in the adult care setting while feeling assured of continued support from healthcare professionals. The involvement of a coordinated multidisciplinary team with expertise in MPS is also key. Overall, transition strategies must be comprehensive and individualised to patients' needs.

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Section: Introductionmentioning

confidence: 99%

“…Access to adult care specialists with specific disease experience [3,7,9,11,[13], [14], [15], [16],18,19,21,22,[29], [30], [31], [32]];…”

Section: Introductionmentioning

confidence: 99%

Transition of patients with mucopolysaccharidosis from paediatric to adult care

Lampe

McNelly

Геворкян

et al. 2019

Molecular Genetics and Metabolism Reports

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“…Moreover, transition programs, which are typically developed on the pediatric side of transition, might benefit from including an adult diabetes care and education specialist. 29 Furthermore, nurse-led groups might offer additional support for transitioning young adults with type 1 diabetes. 19 Finally, there was an optimistic tone in many of the freetext comments when the diabetes care and education specialists expressed their sense of joy and hopefulness in their caring for young persons in this age group.…”

Section: Discussionmentioning

confidence: 99%

“…This is like a survey in which 92% of Canadian adult endocrinologists endorsed the challenges of access to mental health services and in which access to pediatric health records was suboptimal. 29 Next, there were observed different perspectives between the adult diabetes care and education specialists and the adult endocrinologists with respect to the importance of direct communication with pediatric providers at the time of transfer. Most educators (74%) deemed this important compared with a third of adult endocrinologists (36%).…”

Section: Discussionmentioning

confidence: 99%

Health Care Transition in Type 1 Diabetes: Perspectives of Diabetes Care and Education Specialists Caring for Young Adults

et al. 2020

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Purpose The purpose of the study was to describe experiences reported by diabetes care and education specialists caring for young adults with type 1 diabetes and to assess perceived deficiencies in clinical resources and barriers to care delivery. Methods A 60-item electronic survey was fielded through email to members of the Association of Diabetes Care and Education Specialists (ADCES). Respondents completed a survey consisting of: (1) clinical practice characteristics and respondents’ demographics; (2) health care transition components (eg, referrals) and their perceived importance; (3) framework of current clinical diabetes care delivery and perceived need for additional support; and (4) perceived barriers regarding clinical care delivery. Statistical analyses included descriptive statistics, chi-square tests, and logistic regression. Results Respondents (N = 531, 96% female, median years in practice = 13; interquartile range = 7-20) represented 49 states plus the District of Columbia. Although 88% of respondents reported reviewing pediatric records as important/very important, only 22% often/always reviewed them. Although 58% of respondents noted easy access to mental health care providers for young adults, 50% stated a need for additional resources. Furthermore, diabetes care and education specialists without easy access to mental health professionals were significantly more likely to report barriers to diabetes management for young adults with depression, substance abuse, eating disorders, and developmental disabilities. Conclusion Study findings highlight modifiable factors that may improve diabetes care coordination for transitioning young adults. Uniform approaches and increased access to trained mental health professionals may help support diabetes care and education specialists in their care of young adults with type 1 diabetes.

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“…[2][3][4][5] However, patients with chronic health conditions and providers report inadequate support and services during the transition to adult care. [6][7][8][9] Emerging adulthood (18-30 years) is a particularly challenging period for people living with a chronic health condition because of the change in type and characteristics of healthcare provision, decreased parental involvement, and the developmental changes emerging adults are undergoing including; emotional, physical, financial, occupational, and social changes within a short period of time. 10,11 These combined challenges result in an increased risk of inadequate medical follow-up, poor self-management, emergency department visits and hospitalizations.…”

Section: Introductionmentioning

confidence: 99%

<p>Methods for Measuring the Time of Transfer from Pediatric to Adult Care for Chronic Conditions Using Administrative Data: A Scoping Review</p>

Shulman

Cohen

Benchimol

et al. 2020

CLEP

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Purpose: To describe methods used to identify the timing of transfer from pediatric to adult care within health administrative data and to identify the advantages and limitations of each method to guide future research. Study Design and Settings: We conducted a scoping review to identify studies, summarized challenges of identifying the timing of transfer, and proposed methodological approaches for each. Results: Studies use the following approaches to capture individuals who transfer from pediatric to adult care by 1) defining the timing of transfer by the last pediatric and first adult care visit last and 2) defining transfer to adult care based on a specific age. Conclusion: There are important limitations of administrative data that must be recognized in designing studies examining the transfer to adult care.

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Adult care providers’ perspectives on the transition to adult care for emerging adults with Type 1 diabetes: a cross‐sectional survey

Cited by 30 publications

References 31 publications

Transition of patients with mucopolysaccharidosis from paediatric to adult care

Transition of patients with mucopolysaccharidosis from paediatric to adult care

Health Care Transition in Type 1 Diabetes: Perspectives of Diabetes Care and Education Specialists Caring for Young Adults

<p>Methods for Measuring the Time of Transfer from Pediatric to Adult Care for Chronic Conditions Using Administrative Data: A Scoping Review</p>

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