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1.
J Cancer Policy ; 39: 100465, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38184144

ABSTRACT

Existing evidence often indicates higher cancer incidence and mortality rates, later diagnosis, lower screening uptake and poorer long-term survival for people living in rural compared to more urbanised areas. Despite wide inequities and variation in cancer care and outcomes across Europe, much of the scientific literature explicitly exploring the impact of rurality on cancer continues to come from Australia and North America. The European Code of Cancer Practice or "The Code" is a citizen and patient-centred statement of the most salient requirements for good clinical cancer practice and has been extensively co-produced by cancer patients, cancer professionals and patient advocates. It contains 10 key overarching Rights that a cancer patient should expect from their healthcare system, regardless of where they live and has been strongly endorsed by professional and patient cancer organisations as well as the European Commission. In this article, we use these 10 fundamental Rights as a framework to argue that (i) the issues and needs identified in The Code are generally more profound for rural people with cancer; (ii) addressing these issues is also more challenging in rural contexts; (iii) interventions and support must explicitly account for the unique needs of rural residents living with and affected by cancer and (iv) new innovative approaches are urgently required to successfully overcome the challenges faced by rural people with cancer and their caregivers. Despite equitable healthcare being a key European policy focus, the needs of rural people living with cancer have largely been neglected.


Subject(s)
Health Services Accessibility , Neoplasms , Humans , Australia/epidemiology , Caregivers , North America , Europe/epidemiology , Neoplasms/diagnosis
2.
J Cancer Policy ; 38: 100452, 2023 12.
Article in English | MEDLINE | ID: mdl-37931888

ABSTRACT

INTRODUCTION: With projected increases in cancer prevalence, and demonstrated unmet need, there is an urgency for a collaborative approach to improving the lives of those living with cancer particularly in rural and coastal areas where cancer survivors face unique challenges. We report on an innovative 'Living with Cancer' (LWC) programme in the rural and coastal English county of Lincolnshire. METHODS: In 2016, the Lincolnshire LWC programme was established to develop person-centred, local support for people living with cancer, their carers and significant others in Lincolnshire. This article reports on the setup of the LWC programme, our innovative approach to delivering cancer care in a rural and coastal setting, as well as our most salient achievements. RESULTS: This work, developed within a policy context of tackling health inequalities and personalised approaches to care, started with stakeholder and community engagement where people described the challenges to living well after cancer and the need to focus on 8 themes further exacerbated by rurality. Recognising the limitations of conventional approaches, led to the development of a strategy underpinned by a shared set of principles and a philosophy of the importance of a transformative, whole-system, place-based, asset-based, and person-centred approaches. The strategy is now being coordinated and delivered across all cancer pathways and Lincolnshire communities. In 2022, permanent funding was secured, and our success was also demonstrated by a national Macmillan Integration Excellence award. DISCUSSION: The initial success of the LWC programme in Lincolnshire is a result of an explicit focus on 'transformation' rather than 'improvement', and a programme not solely situated in an acute setting, which needed a whole systems approach with a focus on person-centred support and community engagement.


Subject(s)
Delivery of Health Care, Integrated , Neoplasms , Humans , Caregivers , Government Programs , Neoplasms/therapy
3.
BMJ Open ; 12(9): e062026, 2022 09 06.
Article in English | MEDLINE | ID: mdl-36691118

ABSTRACT

OBJECTIVE: To systematically identify and explore the existing evidence to inform the development of web-based interventions to support people affected by cancer (PABC). DESIGN: A rapid review design was employed in accordance with the guidance produced by the Cochrane Rapid Reviews Methods Group and reported using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist. A rapid review was chosen due to the need for a timely evidence synthesis to underpin the subsequent development of a digital resource (Shared Lives: Cancer) as part of an ongoing funded project. METHODS AND OUTCOMES: Keyword searches were performed in MEDLINE to identify peer-reviewed literature that reported primary data on the development of web-based interventions designed to support PABC. The review included peer-reviewed studies published in English with no limits set on publication date or geography. Key outcomes included any primary data that reported on the design, usability, feasibility, acceptability, functionality and user experience of web-based resource development. RESULTS: Ten studies were identified that met the pre-specified eligibility criteria. All studies employed an iterative, co-design approach underpinned by either quantitative, qualitative or mixed methods. The findings were grouped into the following overarching themes: (1) exploring current evidence, guidelines and theory, (2) identifying user needs and preferences and (3) evaluating the usability, feasibility and acceptability of resources. Resources should be informed by the experiences of a wide range of end-users taking into consideration current guidelines and theory early in the design process. Resource design and content should be developed around the user's needs and preferences and evaluated through usability, feasibility or acceptability testing using quantitative, qualitative or mixed methods. CONCLUSION: The findings of this rapid review provide novel methodological insights into the approaches used to design web-based interventions to support PABC. Our findings have the potential to inform and guide researchers when considering the development of future digital health resources. TRIAL REGISTRATION NUMBER: The review protocol was registered on the Open Science Framework (https://osf.io/ucvsz).


Subject(s)
Internet-Based Intervention , Neoplasms , Humans , Peer Review
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