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Shared-care model for complex chronic haematological malignancies.

ABSTRACT: Myeloproliferative neoplasms (MPNs) are a group of rare Philadelphia-negative chronic leukemias. Disease rarity has resulted in limited expertise concentrated in specialist centres. Patients are often referred to such expert centres for diagnostic issues, complex decision-making, access to novel drugs through clinical trials, and supportive care. Attending such appointments may increase financial and travel burden, increase caregiver stress, and negatively impact quality of life. To address this, the MPN program at Princess Margaret (PM) Cancer Centre has implemented a shared-care model, working with local healthcare providers to provide ongoing management, and supportive care for MPN patients closer to home. This decreases patient travel burden, while maintaining high-quality patient-centered care. In this article we share our experience implementing the shared-care model. This model is potentially applicable to other chronic hematological malignancies and rare chronic diseases. The ultimate goal of shared-care is not to centralize care, but instead to build a community of accessible care for the patient.

SUBMITTER: Cheung V

PROVIDER: S-EPMC8128424 | biostudies-literature | 2021

REPOSITORIES: biostudies-literature

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Shared-care model for complex chronic haematological malignancies.

Cheung Verna V Siddiq Nancy N Devlin Rebecca R McNamara Caroline C Gupta Vikas V

Canadian oncology nursing journal = Revue canadienne de nursing oncologique 20210501 2

Myeloproliferative neoplasms (MPNs) are a group of rare Philadelphia-negative chronic leukemias. Disease rarity has resulted in limited expertise concentrated in specialist centres. Patients are often referred to such expert centres for diagnostic issues, complex decision-making, access to novel drugs through clinical trials, and supportive care. Attending such appointments may increase financial and travel burden, increase caregiver stress, and negatively impact quality of life. To address this ...[more]

PMID: 34036155

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Project description:IntroductionHaematological malignancies are a heterogenous group of blood and lymphatic cancers. Survivorship care is a similarly diverse term concerning patients' health and wellbeing from diagnosis to end of life. Survivorship care for patients with haematological malignancies has traditionally been consultant-led and secondary care-based, although shifts away from this model have been occurring, largely via nurse-led clinics and interventions with some remote monitoring. However, there remains a lack of evidence regarding which model is most appropriate. Although previous reviews exist, patient populations, methodologies, and conclusions are varied, and further high-quality research and evaluation has been recommended.AimsThe aim of the scoping review this protocol describes is to summarise current evidence on the provision and delivery of survivorship care for adult patients diagnosed with a haematological malignancy, and to identify existing gaps to inform future research.MethodologyA scoping review will be carried out utilising Arksey and O'Malley's guidelines as its methodological framework. Studies published in the English language from December 2007 to the present will be searched on bibliographic databases, including Medline, CINAHL, PsycInfo, Web of Science, and Scopus. Papers' titles, abstracts, and full text will predominantly be screened by one reviewer with a second reviewer blind screening a proportion. Data will be extracted using a customised table developed in collaboration with the review team, and presented in tabular and narrative format, arranged thematically. Studies included will contain data regarding adult (25+) patients diagnosed with any haematological malignancy in combination with aspects related to survivorship care. The survivorship care elements could be delivered by any provider within any setting, but should be delivered pre- or post-treatment, or to patients on a watchful waiting pathway.RegistrationThe scoping review protocol has been registered on the Open Science Framework (OSF) repository Registries (https://osf.io/rtfvq; DOI: 10.17605/OSF.IO/RTFVQ).

Dataset Information

Shared-care model for complex chronic haematological malignancies.

Publications

Shared-care model for complex chronic haematological malignancies.

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