Defining Coordinated Care for People with Rare Conditions: A Scoping Review
References
- Cousino MK, Hazen RA. Parenting stress among caregivers of children with chronic illness: a systematic review. Journal of pediatric psychology, 2013; 38(8): 809–28. DOI: 10.1093/jpepsy/jst049
- Eurordis. Juggling care and daily life: the balancing act of the rare disease community. 2017. Accessed from:
https://www.eurordis.org/publication/juggling-care-and-daily-life-balancing-act-rare-disease-community . - Rare Disease UK. Living with a rare condition: The effect on mental health. 2018a. Accessed from:
https://www.raredisease.org.uk/our-work/living-with-a-rare-condition-the-effect-on-mental-health-2018/ . - Treadwell J, Perez R, Stubbs D, McAllister JW, Stern S, Buzi R.
Case management and care coordination: Supporting children and families to optimal outcomes ; 2015. London: Springer. DOI: 10.1007/978-3-319-07224-1 - The All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed conditions Leaving no one behind: why England needs an implementation plan for the UK Strategy for Rare diseases; 2017. Accessed from:
http://www.raredisease.org.uk/our-work/why-england-needs-an-implementation-plan-for-the-uk-strategy-for-rare-diseases-2017/ . - Schraeder C, Shelton P.
Comprehensive Care Coordination for Chronically Ill Adults . 2011. Chicester: Wiley-Blackwell. DOI: 10.1002/9781118785775 - Department of Health.
The UK Strategy for Rare Diseases ; 2013. Accessed from:https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/260562/UK_Strategy_for_Rare_Diseases.pdf . - Rare Disease UK. “The Rare Reality - An insight into the patient and family experience of rare disease.” 2016. Accessed from:
https://www.raredisease.org.uk/media/1588/the-rare-reality-an-insight-into-the-patient-and-family-experience-of-rare-disease.pdf . - NHS England. The NHS Long Term plan (v1.2). 2019. Accessed from:
https://www.longtermplan.nhs.uk/wp-content/uploads/2019/08/nhs-long-term-plan-version-1.2.pdf . - McAllister JW, Presler E, Cooley WC. Practice-based care coordination: a medical home essential. Pediatrics, 2007; 120(3): e723–e33.
https://pediatrics.aappublications.org/content/120/3/e723.abstract . DOI: 10.1542/peds.2006-1684 - Dharssi S, Wong-Rieger D, Harold M, Terry S. Review of 11 national policies for rare diseases in the context of key patient needs. Orphanet journal of rare diseases, 2017 Dec; 12(1): 63. DOI: 10.1186/s13023-017-0618-0
- Schieppati A, Henter J-I, Daina E, Aperia A. Why rare diseases are an important medical and social issue. The Lancet, 2008; 371(9629): 2039–41. DOI: 10.1016/S0140-6736(08)60872-7
- Bernell S, Howard SW. Use your words carefully: what is a chronic disease? Frontiers in public health, 2016; 4: 159. DOI: 10.3389/fpubh.2016.00159
- World Health Organisation. Noncommunicable diseases and their risk factors; 2018. Accessed from [10/09/2018]:
http://www.who.int/ncds/en/ . - McDonald KM, Sundaram V, Bravata DM, Lewis R, Lin N, Kraft SA, et al. Closing the quality gap: a critical analysis of quality improvement strategies (Vol. 7: Care Coordination). Agency for Healthcare Research and Quality, 2007. 0051; 04(07): 0051-7.
https://www.ncbi.nlm.nih.gov/books/NBK44015/ . - Borrelli B. The assessment, monitoring, and enhancement of treatment fidelity in public health clinical trials. Journal of public health dentistry, 2011; 71(s1): S52–S63. DOI: 10.1111/j.1752-7325.2011.00233.x
- Gerolamo AM, Schore J, Brown RS, Schraeder C. In Schraeder C, Shelton, P (eds.), Comprehensive Care Coordination for Chronically Ill Adults, 2011; 229–261. Chicester: Wiley-Blackwell.
- Davies GP, Harris M, Perkins D, Roland M, Williams A, Larsen K, et al.
Coordination of care within primary health care and with other sectors: a systematic review . Camberra: Australian Primary Health Care Research Institute; 2006.https://rsph.anu.edu.au/files/final_25_powell_davies_pdf_17464.pdf . - McDonald KM, Schultz E, Albin L, Pineda N, Lonhart J, et al. (2014).
Care coordination measures atlas. (Prepared by Stanford University under subcontract to American Institutes for Research on Contract NO. HHSA290-2010-00005I) . AHRQ Publication No. 14-0037-EF. Rockville, MD: Agency for Healthcare Research and Quality.https://www.ahrq.gov/sites/default/files/publications/files/ccm_atlas.pdf . - Genetic Alliance UK. The Hidden Costs of Rare Diseases: A Feasibility Study; 2016. Accessed from:
http://www.geneticalliance.org.uk/media/2502/hidden-costs-full-report_21916-v2-1.pdf . - Tricco AC, Lillie E, Zarin W, O‘Brien KK, Colquhoun H, Levac D, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Annals of internal medicine, 2018; 169(7): 467–73. DOI: 10.7326/M18-0850
- Arksey H, O‘Malley L. Scoping studies: towards a methodological framework. International journal of social research methodology, 2005; 8(1): 19–32. DOI: 10.1080/1364557032000119616
- Levac D, Colquhoun H, O‘Brien KK. Scoping studies: advancing the methodology. Implementation science, 2010; 5(1): 69. DOI: 10.1186/1748-5908-5-69
- Turner S, D’Lima D, Hudson E, Morris S, Sheringham J, Swart N, et al. Evidence use in decision-making on introducing innovations: a systematic scoping review with stakeholder feedback. Implementation Science, 2017; 12(1): 145. DOI: 10.1186/s13012-017-0669-6
- Gough D, Thomas J, Oliver S. Clarifying differences between review designs and methods. Systematic reviews, 2012 Dec 1; 1(1): 28. DOI: 10.1186/2046-4053-1-28
- Gough D, Thomas J, Oliver S. Clarifying differences between reviews within evidence ecosystems. Systematic reviews, 2019 Dec; 8(1): 170. DOI: 10.1186/s13643-019-1089-2
- NHS England. Implementation plan for the UK strategy for rare diseases; 2018. Accessed from:
https://www.england.nhs.uk/wp-content/uploads/2018/01/implementation-plan-uk-strategy-for-rare-diseases.pdf . - Rare Disease UK. Rare disease care coordination. 2013. Accessed from:
https://www.raredisease.org.uk/media/1639/rduk-care-coordinator-report.pdf . - Rare Disease UK. Understanding children and young people’s experiences. 2018b. Accessed from:
http://www.raredisease.org.uk/media/3348/understanding-children-and-young-peoples-experiences-website.pdf . - Van Groenendael S, Giacovazzi L, Davison F, Holtkemper O, Huang Z, Wang Q, et al. High quality, patient centred and coordinated care for Alstrom syndrome: a model of care for an ultra-rare disease. Orphanet journal of rare diseases, 2015; 10(1): 149. DOI: 10.1186/s13023-015-0366-y
- Ferrara L, Morando V, Tozzi V. The transition of patients with rare diseases between providers: the patient journey from the patient perspective. International Journal of Integrated Care, 2017; 17(5). DOI: 10.5334/ijic.3465
- Yeung C, Santesso N, Zeraatkar D, Wang A, Pai M, Sholzberg M, et al. 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. Haemophilia, 2016; 22: 41–50. DOI: 10.1111/hae.13010
- Shojania KG, Bero LA. Taking advantage of the explosion of systematic reviews: an efficient MEDLINE search strategy. Effective clinical practice: ECP, 2001; 4(4): 157–62.
- Higgins JPT, Deeks JJ.
Chapter 7: Selecting studies and collecting data . In Higgins JPT, Green, S (eds.), Cochrane handbook for systematic reviews of interventions; 2008. Chichester: John Wiley & Sons. - Popay J, Roberts H, Sowden A, Petticrew M, Arai L, Rodgers M, Britten N, Roen K, Duffy S. Guidance on the conduct of narrative synthesis in systematic reviews. A product from the ESRC methods programme Version, 2006 Apr 1; 1: b92.
- Braun V, Clarke V. Using thematic analysis in psychology. Qualitative research in psychology, 2006 Jan 1; 3(2): 77–101. DOI: 10.1191/1478088706qp063oa
- Cairo SB, Gasior A, Rollins MD, Rothstein DH, Amer Acad P. Challenges in Transition of Care for Patients With Anorectal Malformations: A Systematic Review and Recommendations for Comprehensive Care. Diseases of the Colon & Rectum, 2018; 61(3): 390–9. DOI: 10.1097/DCR.0000000000001033
- Khan F, Ng L, Amatya B, Brand C, Turner-Stokes L. Multidisciplinary care for Guillain-Barre syndrome. Cochrane Database of Systematic Reviews, 2010(10). DOI: 10.1002/14651858.CD008505.pub2
- Wagner A, Brucker SY, Ueding E, Grober-Gratz D, Simoes E, Rall K, et al. Treatment management during the adolescent transition period of girls and young women with Mayer-Rokitansky-Kuster-Hauser syndrome (MRKHS): a systematic literature review. Orphanet journal of rare diseases, 2016; 11(1): 152. DOI: 10.1186/s13023-016-0536-6
- Betz CL, O’Kane LS, Nehring WM, Lobo ML. Systematic review: Health care transition practice service models. Nursing Outlook, 2016; 64(3): 229–43. DOI: 10.1016/j.outlook.2015.12.011
- Bhawra J, Toulany A, Cohen E, Hepburn CM, Guttmann A. Primary care interventions to improve transition of youth with chronic health conditions from paediatric to adult healthcare: a systematic review. Bmj Open, 2016; 6(5). DOI: 10.1136/bmjopen-2016-011871
- Binks JA, Barden WS, Burke TA, Young NL. What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida. Arch Phys Med Rehabil, 2007; 88(8): 1064–73. DOI: 10.1016/j.apmr.2007.04.018
- Burke L, Kirkham J, Arnott J, Gray V, Peak M, Beresford MW. 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. Journal of Child Health Care, 2018; 22(3): 332–58. DOI: 10.1177/1367493517753330
- Campbell F, Biggs K, Aldiss SK, O’Neill PM, Clowes M, McDonagh J, et al. Transition of care for adolescents from paediatric services to adult health services. Cochrane Database of Systematic Reviews, 2016; 4:
Cd009794 . DOI: 10.1002/14651858.CD009794.pub2 - Chu PY, Maslow GR, von Isenburg M, Chung RJ. Systematic Review of the Impact of Transition Interventions for Adolescents With Chronic Illness on Transfer From Pediatric to Adult Healthcare. Journal of Pediatric Nursing, 2015; 30(5): e19–27. DOI: 10.1016/j.pedn.2015.05.022
- Coyne B, Hallowell SC, Thompson M. Measurable Outcomes After Transfer From Pediatric to Adult Providers in Youth With Chronic Illness. The Journal of adolescent health: official publication of the Society for Adolescent Medicine, 2017; 60(1): 3–16. DOI: 10.1016/j.jadohealth.2016.07.006
- Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Archives of Disease in Childhood, 2011; 96(6): 548–53. DOI: 10.1136/adc.2010.202473
- Doug M, Adi Y, Williams J, Paul M, Kelly D, Petchey R, et al. Transition to adult services for children and young people with palliative care needs: a systematic review. Archives of Disease in Childhood, 2011; 96(1): 78–84. DOI: 10.1136/bmjspcare.2009.163931rep
- Heath G, Farre A, Shaw K. Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences. Patient Education & Counseling, 2017; 100(1): 76–92. DOI: 10.1016/j.pec.2016.08.011
- Kerr H, Price J, Nicholl H, O’Halloran P. Transition from children’s to adult services for young adults with life-limiting conditions: A realist review of the literature. International Journal of Nursing Studies, 2017; 76: 1–27. DOI: 10.1016/j.ijnurstu.2017.06.013
- Prior M, McManus M, White P, Davidson L. Measuring the “triple aim” in transition care: a systematic review. Pediatrics, 2014; 134(6): e1648–61. DOI: 10.1542/peds.2014-1704
- Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Annals of internal medicine, 2009 Aug 18; 151(4): 264–9. DOI: 10.7326/0003-4819-151-4-200908180-00135
- Martinez-Gonzalez NA, Berchtold P, Ullman K, Busato A, Egger M. Integrated care programmes for adults with chronic conditions: a meta-review. International Journal for Quality in Health Care, 2014; 26(5): 561–70. DOI: 10.1093/intqhc/mzu071
- May CR, Eton DT, Boehmer K, Gallacher K, Hunt K, MacDonald S, et al. Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness. BMC health services research, 2014; 14(1): 281. DOI: 10.1186/1472-6963-14-281
- Morris S, Taylor CA, Bloom L, Chitty L, Fulop NJ, et al. (submitted). Coordinated care of rare diseases (CONCORD): protocol for a mixed-methods study.
DOI: https://doi.org/10.5334/ijic.5464 | Journal eISSN: 1568-4156
Language: English
Submitted on: Dec 9, 2019
Accepted on: Jun 1, 2020
Published on: Jun 25, 2020
Published by: Ubiquity Press
In partnership with: Paradigm Publishing Services
Publication frequency: 4 issues per year
Keywords:
© 2020 Holly Walton, Emma Hudson, Amy Simpson, Angus I. G. Ramsay, Joe Kai, Stephen Morris, Alastair G. Sutcliffe, Naomi J. Fulop, published by Ubiquity Press
This work is licensed under the Creative Commons Attribution 4.0 License.