Healthcare Transition in Pediatrics and Young Adults With Inflammatory Bowel Disease

Rohatinsky, Noelle; Risling, Tracie; Kumaran, Maha; Hellsten, Laurie-ann M.; Thorp-Froslie, Nancy

doi:10.1097/sga.0000000000000345

Cited by 12 publications

(8 citation statements)

References 35 publications

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“…Thirdly, the transition process to the management in adulthood of people with IBD might focus on the promotion of the patient's self-management and engagement, implementing the appropriate usage of monitoring tools [ 96 , 97 ]. Due to the continued evolution of the needs, it could be important to build also a transitional IBD-Clinic managed by the collaboration between adult and pediatric professionals.…”

Section: Discussionmentioning

confidence: 99%

The evolution of IBD perceived engagement and care needs across the life-cycle: a scoping review

Volpato

Bosio

Previtali³

et al. 2021

BMC Gastroenterol

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Background The chronic and progressive evolution of Inflammatory Bowel Diseases (IBD), with its prototypical fluctuating trend, creates a condition of psycho-social discomfort, impacting the quality of life in terms of personal, working, and interpersonal. Aims In this article, we want to identify the nature and extent of the research evidence on the life experiences, the perceived engagement, the psychological, social care and welfare needs of people affected by IBD across the lifecycle. Methods Following the approach set out by Arksey and O’Malley and the PRISMA extension for scoping reviews, we conducted a scoping review in March 2019 and closed the review with an update in October 2019. It was performed using electronic databases covering Health and Life Sciences, Social Sciences and Medical Sciences, such as PubMed, Medline, Embase, Scopus, Cochrane, Web of Science, PsycInfo. Results We identified 95 peer-reviewed articles published from 2009 to 2019, that allowed to detection the main needs in children (psychological, need to be accepted, physical activity, feeding, parent style, support, social needs), adolescents (to understand, physical and psychological needs, protection, relational, gratitude, respect, and engagement) and adults (information, medical, psychological, social, work-related, practical, future-related, engagement). Although the literature confirms that the majority of the IBD units have planned provision for the different types of transitions, the quality and appropriateness of these services have not been assessed or audited for all the kinds of challenges across the life cycle. Conclusions The literature shows the relevance of organizing a flexible, personalized health care process across all the critical phases of the life cycle, providing adequate benchmarks for comparison in a multidisciplinary perspective and ensuring continuity between hospital and territory.

show abstract

Section: Discussionmentioning

confidence: 99%

The evolution of IBD perceived engagement and care needs across the life-cycle: a scoping review

Volpato

Bosio

Previtali³

et al. 2021

BMC Gastroenterol

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“…Moreover, the results demonstrated that children's disease knowledge was negatively associated with parent's physical functioning. It was established that parents were too careful when shifting responsibility for disease‐management to children (Rohatinsky et al., 2018). Although children may have disease knowledge, parents were still committed to caring for their children, which may increase parents' stress levels and elicit less confident parenting.…”

Section: Discussionmentioning

confidence: 99%

“…Children's QoL is regarded as a multidimensional construct, including physical, emotional, social and school functioning (Wu et al., 2013). A scoping review and intervention research suggested that QoL should be considered as a critical outcome indicator to reflect the adaptation in the process of transition readiness (Rohatinsky et al., 2018; Skov et al., 2018). Prior observational research have shown that practical transition readiness was a vital predictor that could improve children's QoL by providing knowledge and improving the self‐management of diseases for children (Ma et al., 2018; Sheng et al., 2018).…”

Section: Introductionmentioning

confidence: 99%

Influence of transition readiness from paediatric to adult health care on quality of life in child–parent dyads with long‐term conditions

Gong

Zhang

et al. 2021

Journal of Advanced Nursing

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Aim To delineate the impact of perspective of children's transition readiness from paediatric to adult health care on quality of life in child–parent dyads with long‐term conditions. We used Actor–Partner Interdependence Model to identify actor effects (effect of one's own transition readiness on one's own quality of life) and partner effects (effect of one's own transition readiness on the partner's quality of life). Design A multi‐centre cross‐sectional survey. Methods The study was conducted in two paediatric hospitals in China from October 2018‐August 2019. We used a researcher‐designed questionnaire to collect demographic and clinical characteristics. Furthermore, we used four questionnaires assessing transition readiness and quality of life in child and parent respectively to collect data from 370 child–parent dyads. Structural equation modelling was applied to estimate the effect of actor–partner interdependence models. Results The total score of transition readiness had two actor effects on total child and parent quality of life controlling for age (βchildren = 3.335, p = .032 and βparents = 8.952, p < .001), while only one actor effect controlling for gender (βparents = 8.891, p < .001). Specific transition readiness dimensions had different partner effects on different domains of children and parents' quality of life. Moreover, younger children and fathers had a better quality of life. Conclusion Our study verified inherently interpersonal relationship that transition readiness appeared to influence quality of life in child–parent dyads with long‐term conditions. Impact This study was the first to verify mutual influence of transition readiness and quality of life in child–parent dyad using actor–partner interdependence model. Nurses who design the transition promoting programs should consider the effective communication between healthcare provider and child–parent dyads and support parents' involvement to improve shared understanding about managing child's condition, especially for older children and mothers.

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“…Thirdly, the transition process to the management in adulthood of IBDs might focus on the promotion of the patient's self-management and engagement, implementing the appropriate usage of monitoring tools (89,90). Due to the continue evolution of the needs, it could be important to build also a transitional IBD-Clinic managed by the collaboration between adult and pediatric professionals.…”

Section: Discussionmentioning

confidence: 99%

The Evolution of IBD Perceived Engagement and Care Needs Across the Life-Cycle: A Scoping Review

Volpato

Bosio

Previtali³

et al. 2020

Preprint

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Background: The chronic and progressive evolution of Inflammatory Bowel Diseases (IBD), with its prototypical fluctuating trend, creates a condition of psycho-social discomfort, impacting the quality of life in terms of personal, working and interpersonal.Aims: In this article, we want to identify the nature and extent of the research evidence on the life experiences, the perceived engagement and the psychosocial and medical needs of people affected by IBD across the lifecycle. Methods: Following the approach set out by Arksey and O’Malley and the PRISMA extension for scoping reviews, we conducted a scoping review in March 2019 and closed the review with an update in October 2019. It was performed using electronic databases covering Health and Life Sciences, Social Sciences and Medical Sciences, such as PubMed, Medline, Embase, Scopus, Cochrane, Web of Science, PsycInfo.Results: We identified 95 peer-reviewed articles published from 2009 to 2019, that allowed to detect the main needs in children (psychological, need to be accepted, physical activity, feeding, parent style and support, social needs), adolescents (to understand, physical and psychological needs, protection, relational, gratitude, respect and engagement) and adults (information, medical, psychological, social, work-related, practical, future-related, engagement). Although the literature confirms that the majority of the IBD units have planned provision for the different types of transitions, the quality and appropriateness of these services have not been assessed or audited for all the kind of challenges across the life cycle. Conclusions: The literature shows the relevance of organising a flexible, personalised health care process across all the critical phases of the life cycle, providing adequate benchmarks for comparison in a multidisciplinary perspective and ensuring continuity between hospital and territory.

show abstract

Healthcare Transition in Pediatrics and Young Adults With Inflammatory Bowel Disease

Cited by 12 publications

References 35 publications

The evolution of IBD perceived engagement and care needs across the life-cycle: a scoping review

The evolution of IBD perceived engagement and care needs across the life-cycle: a scoping review

Influence of transition readiness from paediatric to adult health care on quality of life in child–parent dyads with long‐term conditions

The Evolution of IBD Perceived Engagement and Care Needs Across the Life-Cycle: A Scoping Review

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