Defining Coordinated Care for People with Rare Conditions: A Scoping Review

Challenges in Transition of Care for Patients With Anorectal Malformations

(2018) Sarah B. Cairo et al.   DISEASES OF THE COLON & RECTUM

The transition of adolescents with juvenile idiopathic arthritis or epilepsy from paediatric health-care services to adult health-care services: A scoping review of the literature and a synthesis of the evidence

(2018) Lauren Burke et al.   Journal of Child Health Care

PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation

(2018) Andrea C. Tricco et al.   ANNALS OF INTERNAL MEDICINE

Evidence use in decision-making on introducing innovations: a systematic scoping review with stakeholder feedback

(2017) Simon Turner et al.   Implementation Science

Transition from children’s to adult services for young adults with life-limiting conditions: A realist review of the literature

(2017) Helen Kerr et al.   INTERNATIONAL JOURNAL OF NURSING STUDIES

Measurable Outcomes After Transfer From Pediatric to Adult Providers in Youth With Chronic Illness

(2017) Bethany Coyne et al.   JOURNAL OF ADOLESCENT HEALTH

Review of 11 national policies for rare diseases in the context of key patient needs

(2017) Safiyya Dharssi et al.   Orphanet Journal of Rare Diseases

Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

(2017) Gemma Heath et al.   PATIENT EDUCATION AND COUNSELING

Integrated multidisciplinary care for the management of chronic conditions in adults: an overview of reviews and an example of using indirect evidence to inform clinical practice recommendations in the field of rare diseases

(2016) C. H. T. Yeung et al.   HAEMOPHILIA

Systematic review: Health care transition practice service models

(2016) Cecily L. Betz et al.   NURSING OUTLOOK

Treatment management during the adolescent transition period of girls and young women with Mayer-Rokitansky-Küster-Hauser syndrome (MRKHS): a systematic literature review

(2016) Anke Wagner et al.   Orphanet Journal of Rare Diseases

High quality, patient centred and coordinated care for Alstrom syndrome: a model of care for an ultra-rare disease

(2015) Stephanie Van Groenendael et al.   Orphanet Journal of Rare Diseases

Systematic Review of the Impact of Transition Interventions for Adolescents With Chronic Illness on Transfer From Pediatric to Adult Healthcare

(2015) Patricia Y. Chu et al.   Journal of Pediatric Nursing-Nursing Care of Children & Families

Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness

(2014) Carl R May et al.   BMC HEALTH SERVICES RESEARCH

Integrated care programmes for adults with chronic conditions: a meta-review

(2014) Nahara Anani Martínez-González et al.   INTERNATIONAL JOURNAL FOR QUALITY IN HEALTH CARE

Measuring the “Triple Aim” in Transition Care: A Systematic Review

(2014) Megan Prior et al.   PEDIATRICS

Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement

(2013) David Moher   ANNALS OF INTERNAL MEDICINE

Improving the transition between paediatric and adult healthcare: a systematic review

(2011) R Crowley et al.   ARCHIVES OF DISEASE IN CHILDHOOD

Scoping studies: advancing the methodology

(2010) Danielle Levac et al.   Implementation Science

Transition to adult services for children and young people with palliative care needs: a systematic review

(2009) M. Doug et al.   ARCHIVES OF DISEASE IN CHILDHOOD

Why rare diseases are an important medical and social issue

(2008) Arrigo Schieppati et al.   LANCET