Care across the continuum: Supporting women concerned about breast cancer in genetics and oncology settings

Objectives: The ‘Lives at Risk’ study, funded by Tenovus Cancer Care, had the following objectives to: a) improve service provision for women who had had at least one episode of breast cancer or were at risk of developing breast cancer, b) clarify risk assessment management across the care continuum, and c) examine how different assessments affected women's lives.

These objectives were developed within the context of a disease type that worldwide accounts for more than 4 in ten (42%) of all new cancer cases each year, and in the U.K alone 55,000 diagnoses each year, 2,300 of which are in Wales.

Methods: This study followed an intra-method design with: a) women with a previous personal history of breast cancer undergoing risk assessment by oncologists and b) women with no previous personal history but familial links, assessed by genetics specialists. The study took place in one large Welsh, National Health Service (NHS) hospital, between 2014 and 2015 where women were frequently moved between genetics and oncology teams to clarify ‘at risk’ classifications.

Women who consented to participate created ‘Books of Experience’ disclosing what it meant to be classified as ‘at risk’, and aspirations for good management across the continuum of health care services. Women discussed breast cancer over the life-course. The ‘Books’ mixed imagery with text, biography and auto-biography, and service documentation [1]. Women undertook bio-photographic elicitation interviews and joined a Stakeholder Forum with other mixed groups to clarify expectations for cross-disciplinary care. Thematic and visual analyses led to emergent, culturally-, time- and disease-specific patterns of meaning.

Results: 24 women participated. Assessment across the continuum of both disease progression and support services revealed women's innermost fears about impersonal care. Women were as confident in having a named nurse specialist as they were lacking in confidence about being moved between teams, which was described as bringing discord and disjuncture to their lives and relationships. Being released from in-hospital care and sent to respite care also worried them, as did having care packages shared between clinicians, which was disconcerting. Indeed, analogies were made with prisoners’ experiences of finishing a lengthy jail sentence, where they find themselves yearning for the safety and security of the prison walls. Women wanted smooth transitions from one state-of-play to another and for many that meant named practitioners.

Conclusion: Care across the continuum is acceptable if women experience personalised care provided by named individuals. Individualised care that is well-planned in advance of treatments or risk assessment is considered the optimal arrangement. For this to happen, organisations need to manage an integrated service delivery and patient-centred care. This will not only reassure women that their needs are aligned with routine clinical practice, but that there will be a smooth transition from in-hospital care to community support services.