Non-adherence and transition clinics

Kelly, Déirdre; Wray, Jo

doi:10.1016/j.bpg.2020.101687

Cited by 11 publications

(9 citation statements)

References 38 publications

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“…Moreover, medical outcomes and skills of the patient take on a more important role at the end of transition. The average age of transition onset from our survey is higher than that usually cited in the literature ( https://www.gottransition.org ) ( 21 , 22 ).…”

Section: Discussioncontrasting

confidence: 60%

“…The average age of transition onset from our survey is higher than that usually cited in the literature (https://www.gottransition.org accessed 21 st of May 2022). 21,22 This discrepancy between the theoretical framework and practical application could be explained by administrative requirements or specificity of pituitary population, or societal changes with time, although these questions cannot be answered using the present survey data. Age alone is not a sufficient criterion for appropriate timing.…”

Section: Discussionmentioning

confidence: 80%

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Mapping of the current transition of care practice for patients with pituitary disease at Endo-ERN reference centers

Shishkov

Tuccillo

Iotova³

et al. 2023

Endocrine Connections

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Rare endocrine conditions present specific diagnostic and management challenges to healthcare providers, one of which is the understudied transition of care. Despite the need for guidance regarding transition, consensus on structured and protocolled approaches are lacking. Therefore, we aimed to map the current clinical practice, and identify unmet needs regarding transition of care for patients with pituitary disease in the reference centers (RCs) of the European Reference Network on Rare Endocrine Conditions (Endo-ERN). A survey-based, cross-sectional study using the EU Survey tool was performed, and completed by 46 physicians (n) from 30 RCs (N). Transition is a common practice among RCs (n=44/46), usually accomplished by a multidisciplinary team meeting (N=20/30). Criteria for start and end of transition were defined in half of the RCs, with 16.7% of centers providing dissimilar answers. Transition readiness was assessed by >75% of the RCs, mostly by unvalidated means (e.g. subjective opinions, informal consultations). Pituitary-specific transition assessment tool was applied in one RC only. Transition protocols were present in only 9% of RCs, while in many RCs transition decisions were taken in combined adult-pediatric meetings, or based on clinicians’ personal judgment. A minority of physicians evaluated the effectiveness of transition-related interventions (n=11/46), or medical outcomes (n=8/46). Patient-reported outcome measures were infrequently used (n=4/46). Identified unmet needs included development of guidelines (n=5/46), and EU-wide approach (n=2/46). This study exemplifies the unmet needs for a structure the definition of the transition period and transition management for patients with rare hypothalamic and pituitary conditions from healthcare providers perspective.

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Section: Discussioncontrasting

confidence: 60%

Section: Discussionmentioning

confidence: 80%

Mapping of the current transition of care practice for patients with pituitary disease at Endo-ERN reference centers

Shishkov

Tuccillo

Iotova³

et al. 2023

Endocrine Connections

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“…Current evidence shows that AYAs with long-term conditions often experience negative transitions, resulting from inadequate transition preparation (Care Quality Commission, 2014;Coyne et al, 2019;Zhou et al, 2016) and a lack of coordination and management between children's and adult healthcare organisations (Brown et al, 2019;Campbell et al, 2016). Poorly planned and delivered transitions are associated with discontinuity of care (Dogba et al, 2014), risk of nonadherence to treatment (Kelly and Wray, 2020), poor clinical outcomes and increased healthcare costs (Moore Hepburn et al, 2015) and negative consequences relating to morbidity and mortality (Viner, 2008).…”

Section: Introductionmentioning

confidence: 99%

Evaluating the implementation of a person-centred transition programme for adolescents and young adults with long-term conditions: the role of context and organisational behaviour

Feather,

Kaehne,

Kiernan

2023

JHOM

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PurposeDrawing on the experiences of healthcare professionals in one paediatric hospital, this paper explores the influence of context and organisational behaviour on the implementation of a person-centred transition programme for adolescents and young adults (AYA) with long-term conditions.Design/methodology/approachA single embedded qualitative case study design informed by a realist evaluation framework, was used. Participants who had experience of implementing the transition programme were recruited from across seven individual services within the healthcare organisation. The data were gathered through semi-structured interviews (n = 20) and analysed using thematic analysis.FindingsImplementation of the transition programme was influenced by the complex interaction of macro, meso and micro processes and contexts. Features of organisational behaviour including routines and habits, culture, organisational readiness for change and professional relationships shaped professional decision-making around programme implementation.Originality/valueThere exists a significant body of research relating to the role of context and its influence on the successful implementation of complex healthcare interventions. However, within the area of healthcare transition there is little published evidence on the role that organisational behaviour and contextual factors play in influencing transition programme implementation. This paper provides an in-depth understanding of how organisational behaviour and contextual factors affect transition programme implementation.

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“…Those with LTC can find transition difficult (Fegran et al, 2014) and are more at risk of poor health outcomes and disengagement with care following the move from children’s services (Coyne et al, 2019; Kelly and Wray, 2020; Lotstein et al, 2013). Over the last decade, transition services have been identified as a key area requiring significant improvement (Campbell et al, 2016) leading to development of several policy and guidance documents within the United Kingdom (e.g.…”

Section: Introductionmentioning

confidence: 99%

Stuck in transit: A qualitative study of the transitional care needs of young people with epilepsy and juvenile idiopathic arthritis

Wilson

Whittaker

Arnott

et al. 2022

J Child Health Care

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Transition services for young people with long-term conditions often fall short. This qualitative study explored perspectives on service features that enable effective transition in epilepsy and juvenile idiopathic arthritis. Patients, parents, clinicians and service commissioners took part in semi-structured interviews ( n = 18). Thematic analysis was used to identify key features, barriers and facilitators of effective transition across participant groups. Analysis led to the development of nine sub-themes which mapped to overarching domains of communication, capability, continuity and capacity. Findings include the need for age appropriate communication, the link between parental dependence, self-care and patient knowledge, the value of service integration for continuity and the impact of capacity on flexible and age appropriate transition services.

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Non-adherence and transition clinics

Cited by 11 publications

References 38 publications

Mapping of the current transition of care practice for patients with pituitary disease at Endo-ERN reference centers

Mapping of the current transition of care practice for patients with pituitary disease at Endo-ERN reference centers

Evaluating the implementation of a person-centred transition programme for adolescents and young adults with long-term conditions: the role of context and organisational behaviour

Stuck in transit: A qualitative study of the transitional care needs of young people with epilepsy and juvenile idiopathic arthritis

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