Models of care and the advanced practice nurse role in caring for children and adolescents with a cancer predisposition syndrome: a scoping review protocol.


Journal

JBI evidence synthesis
ISSN: 2689-8381
Titre abrégé: JBI Evid Synth
Pays: United States
ID NLM: 101764819

Informations de publication

Date de publication:
06 Nov 2023
Historique:
medline: 6 11 2023
pubmed: 6 11 2023
entrez: 6 11 2023
Statut: aheadofprint

Résumé

This scoping review will examine the literature describing models of care, barriers and facilitators of care, and gaps in care delivery for children and adolescents with a cancer predisposition syndrome (CPS). It will also explore how advanced practice nurses contribute to the delivery of care for children and adolescents with a CPS. Cancer remains a leading cause of death in children and adolescents. Pediatric CPS clinics proactively aim for early diagnosis or prevention of cancer in children and adolescents with a CPS. Additionally, the holistic well-being of individuals requires a multidisciplinary team, including advanced practice nurses, to manage their complex health care needs. This review will consider both published and unpublished literature exploring aspects of models of care and the role of the nurse in pediatric CPS clinics. Literature published in English from 1991 will be considered. This scoping review will follow the JBI methodology for scoping reviews. The review will include searches in MEDLINE, Embase, and CINAHL Complete. Gray literature searches will be conducted in OAIster and Social Science Research Network (SSRN), as well as websites of hospitals in the USA and the UK with large pediatric cancer centers. Two reviewers will screen titles, abstracts, and full-text articles. An extraction table will be used to extract relevant data from all included articles and facilitate data analysis. Results will be presented in narrative and tabular format. Open Science Framework osf.io/axkp7/.

Identifiants

pubmed: 37930416
doi: 10.11124/JBIES-23-00074
pii: 02174543-990000000-00234
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Informations de copyright

Copyright © 2023 JBI.

Déclaration de conflit d'intérêts

The authors declare no conflicts of interest

Références

Australian Institute of Health and Welfare. Australia’s youth: deaths [internet]. AIHW; 2021 [cited 2023 Jul 17]. Available from: https://www.aihw.gov.au/reports/children-youth/deaths#leading-causes.
Huber S, Schimmel M, Dunstheimer D, Nemes K, Richter M, Streble J, et al. The need for tumor surveillance of children and adolescents with cancer predisposition syndromes: a retrospective cohort study in a tertiary-care children’s hospital. Eur J Pediatr 2022;181(4):1585–1596.
Ripperger T, Bielack S, Borkhardt A, Brecht I, Burkhardt B, Calaminus G, et al. Childhood cancer predisposition syndromes-a concise review and recommendations by the Cancer Predisposition Working Group of the Society for Pediatric Oncology and Hematology. Am J Med Genet A 2017;173(4):1017–1037.
Kaphingst K, Kohlmann W, Chambers R, Goodman M, Bradshaw R, Chan P, et al. Comparing models of delivery for cancer genetics services among patients receiving primary care who meet criteria for genetic evaluation in two healthcare systems: BRIDGE randomized controlled trial. BMC Health Serv Res 2021;21(1):542.
Davidson P, Halcomb E, Hickman L, Phillips J, Graham B. Beyond the rhetoric: what do we mean by a ‘model of care’? Aus J Adv Nurs 2006;23(3):47–55.
Kratz CP, Jongmans MC, Cavé H, Wimmer K, Behjati S, Guerrini-Rousseau L, et al. Predisposition to cancer in children and adolescents. Lancet Child Adolesc Health 2021;5(2):142–154.
Grossen A, Gavula T, Chrusciel D, Evans A, McNall-Knapp R, Taylor A, et al. Multidisciplinary neurocutaneous syndrome clinics: a systematic review and institutional experience. Neurosurgical Focus 2022;52(5):5360.
Druker H, Zelley K, McGee RB, Scollon SR, Kohlmann WK, Schneider KA, et al. Genetic counselor recommendations for cancer predisposition evaluation and surveillance in the pediatric oncology patient. Clin Cancer Res 2017;23(13):e91–e97.
Kokkinou E, Roka K, Alexopoulos A, Tsina E, Nikas I, Krallis P, et al. Development of a multidisciplinary clinic of neurofibromatosis type 1 and other neurocutaneous disorders in Greece. A 3-year experience. Postgrad Med 2019;131(7):445–452.
Peron A, Canevini MP, Ghelma F, Di Marco F, Vignoli A. Healthcare transition from childhood to adulthood in tuberous sclerosis complex. Am J Med Genet C Semin Med Genet. Wiley Online Library; 2018.
van Engelen K, Barrera M, Wasserman J, Armel S, Chitayat D, Druker H, et al. Tumor surveillance for children and adolescents with cancer predisposition syndromes: The psychosocial impact reported by adolescents and caregivers. Pediatr Blood Cancer 2021;68(8):e29021.
Malkin D, Nichols K, Schiffman J, Plon S, Brodeur G. The future of surveillance in the context of cancer predisposition: through the murky looking glass. Clin Cancer Res 2017;23(21):e133–e137.
Agency for Clinical Innovation. Clinical genomics model of care: organisational model of care [internet]. ACI; 2021 [cited 2023 Jun 26]. Available from: https://aci.health.nsw.gov.au/__data/assets/pdf_file/0006/669660/ACI-Clinical-genomics-model-of-care.pdf.
Merker V, Dai A, Radtke H, Knight P, Jordan J, Plotkin S. Increasing access to specialty care for rare diseases: a case study using a foundation sponsored clinic network for patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis. BMC Health Serv Res 2018;18(1):668.
Davies K. Multiple endocrine neoplasia in children and the importance of screening: part 2. J Pediatr Nurs 2018;42:129–131.
Schadewaldt V, Schultz T. Nurse-led clinics as an effective service for cardiac patients: results from a systematic review. Int J Evid Based Healthc 2011;9(3):199–214.
Schober M, Lehwaldt D, Rogers M, Steinke M, Turale S, Pulcini J, et al. Guidelines on advanced practice nursing 2020 [internet]. International Council of Nurses 2020 [cited 2023 Sep 4]. Available from: https://www.icn.ch/system/files/documents/2020-04/ICN_APN%20Report_EN_WEB.pdf.
Moore J, McQuestion M. The clinical nurse specialist in chronic diseases. Clin Nurse Spec 2012;26(3):149–163.
Etchegary H, Pike A, Puddester R, Watkins K, Warren M, Francis V, et al. Cancer prevention in cancer predisposition syndromes: a protocol for testing the feasibility of building a hereditary cancer research registry and nurse navigator follow up model. PLoS One 2022;17(12):e0279317.
Middelton L, Dimond E, Calzone K, Davis J, Jenkins J. The role of the nurse in cancer genetics. Cancer Nurs 2002;25(3):196–206.
Indra V. Nursing genetics and genomics: a review. Asian J Nurs Educ Res 2018;8(4):543–548.
McGill BC, Wakefield CE, Vetsch J, Lim Q, Warby M, Metcalfe A, et al. “I remember how I felt, but I don’t remember the gene”: families’ experiences of cancer-related genetic testing in childhood. Pediatr Blood Cancer 2019;66(8):e27762.
Peters MDJ, Marnie C, Tricco AC, Pollock D, Munn Z, Alexander L, et al. Updated methodological guidance for the conduct of scoping reviews. JBI Evid Implement 2020;18(10):2119–2126.
Seid M, Opipari-Arrigan L, Gelhard LR, Varni JW, Driscoll K. Barriers to care questionnaire: reliability, validity, and responsiveness to change among parents of children with asthma. Acad Pediatr 2009;9(2):106–113.
US Department of Health and Human Services; Food and Drug Administration; Center for Devices and Radiological Health. Guidance for industry and FDA Staff: Pediatric Expertise For Advisory Panels US Department of Health and Human Services. Food and Drug Administration; Center for Devices and Radiological Health; 2003.
Nursing and Midwifery Office. A unique and vital contribution: nursing model of care South Australia. Wellbeing DoHa: Nursing and Midwifery Office; 2020..
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. Ann Intern Med 2018;169(7):467–473.
Nishisho I, Nakamura Y, Miyoshi Y, Miki Y, Ando H, Horii A, et al. Mutations of chromosome 5q21 genes in FAP and colorectal cancer patients. Science 1991;253(5020):665–669.
Munn Z, Aromataris E, Tufanaru C, Stern C, Porritt K, Farrow J, et al. The development of software to support multiple systematic review types: the Joanna Briggs Institute System for the Unified Management, Assessment and Review of Information (JBI SUMARI). Int J Evid Based Healthc 2019;17(1):36–43.

Auteurs

Andrew M Grant (AM)

Sydney Children's Hospitals Network, Sydney Children's Hospital, Sydney, NSW, Australia.
University of Technology Sydney, Sydney, NSW, Australia.
The New South Wales Centre for Evidence Based Health Care: A JBI Affiliated Group, Western Sydney University, Sydney, NSW, Australia.

Christina Signorelli (C)

Sydney Children's Hospitals Network, Sydney Children's Hospital, Sydney, NSW, Australia.
University of New South Wales, Sydney, NSW, Australia.

Natalie Taylor (N)

University of New South Wales, Sydney, NSW, Australia.
Maridulu Budyari Gumal (SPHERE), Sydney, NSW, Australia.

Sharon de Graves (S)

VCCC (Victorian Comprehensive Cancer Centre) Alliance, Melbourne, Victoria, Australia.
University of Melbourne, Melbourne, Victoria, Australia.

Kathrine M Tucker (KM)

Sydney Children's Hospitals Network, Sydney Children's Hospital, Sydney, NSW, Australia.
University of New South Wales, Sydney, NSW, Australia.
Maridulu Budyari Gumal (SPHERE), Sydney, NSW, Australia.
Prince of Wales Hospital, Sydney, NSW, Australia.

Marilyn Cruickshank (M)

Sydney Children's Hospitals Network, Sydney Children's Hospital, Sydney, NSW, Australia.
University of Technology Sydney, Sydney, NSW, Australia.
Maridulu Budyari Gumal (SPHERE), Sydney, NSW, Australia.
Griffith University, Griffith, QLD, Australia.

Classifications MeSH