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Published in: BMC Health Services Research 1/2018

Open Access 01-12-2018 | Study protocol

Protocol for a longitudinal mixed methods realist evaluation of holistic needs assessment and care planning for people affected by cancer

Authors: Lucy Johnston, Karen Campbell

Published in: BMC Health Services Research | Issue 1/2018

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Abstract

Background

In 2012, approximately 14 million new cases of cancer were diagnosed. As a result of advances in treatment, screening and prevention programmes the number of people surviving cancer globally is also increasing.
The growing understanding of the diversity and scale of the need for support, compounded by the increasing prevalence of cancer survivors has fuelled the development and evaluation of a range of services and models to meet them. A key intervention is the holistic needs assessment and care planning, however there is little homogeneity in its actual delivery to cancer survivors. To fill this evidence gap there is a need to understand any effect implementation variables have on patient experiences, measurable outcomes and resource use. We are exploring this through a realist evaluation of holistic needs assessment and care planning.

Methods

This longitudinal, mixed method realist evaluation has been approached in 4 phases. Phases 1 and 2 have been completed (2014–2017) and a summary of this work is presented. We then provide a detailed protocol for Phases 3 and 4 (2017 onwards). Phase 1: Establishment of programme theory for HNA and care planning; Phase 2: Exploration and documentation of local programme theories; Phase 3: Theory testing and refinement and Phase 4 - Theory validation and dissemination.
Phase 3 draws on a range of data derived from 6 study sites. Methods include analysis of patient characteristics and concerns identified, qualitative interviews /fieldwork with local project staff, national stakeholders, professionals using the needs assessment tool and patients, a three-year longitudinal online survey of wider programme stakeholders and a review and synthesis of local project evaluations and patient care plans.

Discussion

This intervention is a key component globally of cancer survivorship care. The results of this realist evaluation can be used to optimise the delivery and development of HNA and care planning for people affected by cancer. To our knowledge this is the first study of this type. By utilising the discipline of Realistic Evaluation this mixed methods study will elicit findings with greater potential for generalisability and transferability within Scotland, the UK and beyond.
Literature
1.
go back to reference Ferlay J, Soerjomataram I, Ervik M, Dikshit R, Eser S, Mathers C, Rebelo M, Parkin DM, Forman D, Bray F. Cancer incidence and mortality worldwide: sources, methods and major patterns in GLOBOCAN 2012. Int J Cancer. 2015;136(5):E359–86. Ferlay J, Soerjomataram I, Ervik M, Dikshit R, Eser S, Mathers C, Rebelo M, Parkin DM, Forman D, Bray F. Cancer incidence and mortality worldwide: sources, methods and major patterns in GLOBOCAN 2012. Int J Cancer. 2015;136(5):E359–86.
5.
go back to reference Parry C, Kent EE, Mariotto AB, Alfano CM, Rowland JH. Cancer survivors: a booming population. Cancer Epidemiology Biomarkers Prev. 2011;20:1996–2005. Parry C, Kent EE, Mariotto AB, Alfano CM, Rowland JH. Cancer survivors: a booming population. Cancer Epidemiology Biomarkers Prev. 2011;20:1996–2005.
7.
go back to reference ArmesJ CM, Colbourne L, Morgan H, Murrells L, Oakley C, Palmer N, Ream E, Young A, Richardson A. Patients’ supportive care needs beyond the end of treatment: a prospective, longitudinal survey. J Clin Oncol. et al, 2009;27(36):6172–9. ArmesJ CM, Colbourne L, Morgan H, Murrells L, Oakley C, Palmer N, Ream E, Young A, Richardson A. Patients’ supportive care needs beyond the end of treatment: a prospective, longitudinal survey. J Clin Oncol. et al, 2009;27(36):6172–9.
8.
go back to reference Glaser AW, Fraser LK, Corner J, Feltblower R, Morris EJA, Hartwell G, Richards M. Patient-reported outcomes of cancer survivors in England 1-5 years after diagnosis: a cross-sectional survey. BMJ Open. 2013;3:e002317.CrossRefPubMedPubMedCentral Glaser AW, Fraser LK, Corner J, Feltblower R, Morris EJA, Hartwell G, Richards M. Patient-reported outcomes of cancer survivors in England 1-5 years after diagnosis: a cross-sectional survey. BMJ Open. 2013;3:e002317.CrossRefPubMedPubMedCentral
9.
go back to reference Foster C, Wright D, Hill H, Hopkinson J, Roffe L. Psychosocial implications of living 5 years or more following a cancer diagnosis: a systematic review of the research evidence. Eur. J. Cancer Care. 2009;18:223–47.CrossRef Foster C, Wright D, Hill H, Hopkinson J, Roffe L. Psychosocial implications of living 5 years or more following a cancer diagnosis: a systematic review of the research evidence. Eur. J. Cancer Care. 2009;18:223–47.CrossRef
10.
go back to reference Khan N, Watson E, Rose P. Primary care consultation behaviours of long-term, adult survivors of cancer in the UK. Br J Gen Pract. 2011;61(584):197–9.CrossRefPubMedPubMedCentral Khan N, Watson E, Rose P. Primary care consultation behaviours of long-term, adult survivors of cancer in the UK. Br J Gen Pract. 2011;61(584):197–9.CrossRefPubMedPubMedCentral
11.
go back to reference Harrison JD, Young JM, Price MA, Butow PN, Solomon MJ. What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer. 2009;17(8):1117–28.CrossRefPubMed Harrison JD, Young JM, Price MA, Butow PN, Solomon MJ. What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer. 2009;17(8):1117–28.CrossRefPubMed
12.
go back to reference Carey M, Lambert S, Smits R, Paul C, Samson-Fisher R, Clinton-McHarg T. The unfulfilled promise: a systematic review of interventions to reduce the unmet supportive care needs of cancer patients. Support Care Cancer. 2012;20:207. https://doi.org/10.1007/s00520-011-1327 Carey M, Lambert S, Smits R, Paul C, Samson-Fisher R, Clinton-McHarg T. The unfulfilled promise: a systematic review of interventions to reduce the unmet supportive care needs of cancer patients. Support Care Cancer. 2012;20:207. https://​doi.​org/​10.​1007/​s00520-011-1327
14.
go back to reference The National Cancer Survivorship Initiative National Cancer Survivorship Initiative. The National Cancer Survivorship Initiative Vision. London: Department of Health; 2010. The National Cancer Survivorship Initiative National Cancer Survivorship Initiative. The National Cancer Survivorship Initiative Vision. London: Department of Health; 2010.
21.
23.
go back to reference Pawson R, Tilley N. Realistic Evaluation. London: Sage Publications Ltd; 1997. Pawson R, Tilley N. Realistic Evaluation. London: Sage Publications Ltd; 1997.
26.
go back to reference Cooperrider, D., Whitney, D., Stavros, J. Appreciative inquiry handbook: for leaders of change. 2nd ed. Berrett-Koehler. Brunswick Ohio. 2008. Cooperrider, D., Whitney, D., Stavros, J. Appreciative inquiry handbook: for leaders of change. 2nd ed. Berrett-Koehler. Brunswick Ohio. 2008.
29.
go back to reference Guest G, MacQueen K, Namey E. Applied thematic analysis. London: Sage Publications Ltd; 2012.CrossRef Guest G, MacQueen K, Namey E. Applied thematic analysis. London: Sage Publications Ltd; 2012.CrossRef
32.
go back to reference Byng, R., Norman, I. and Redfern, S. Using realistic evaluation to evaluate a practice level intervention to improve primary healthcare for patients with long term mental illness. Evaluation: International Journal of Theory, Research and Practice, 11, 69–93. Volume: 11 issue: 1, 2005. https://doi.org/10.1177/1356389005053198 Byng, R., Norman, I. and Redfern, S. Using realistic evaluation to evaluate a practice level intervention to improve primary healthcare for patients with long term mental illness. Evaluation: International Journal of Theory, Research and Practice, 11, 69–93. Volume: 11 issue: 1, 2005. https://​doi.​org/​10.​1177/​1356389005053198​
Metadata
Title
Protocol for a longitudinal mixed methods realist evaluation of holistic needs assessment and care planning for people affected by cancer
Authors
Lucy Johnston
Karen Campbell
Publication date
01-12-2018
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2018
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-018-3373-6

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