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

Lucy Johnston, Karen Campbell

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. 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. 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.