Patient Pathways in cancer care
This project is led by NAFKAM (Norwegian research center in Alternative and Complementary Medicine). NSE has contributed with health service research competency. PATH results has contributed to other NSE-projects that are focused on person-centeredness in care.
An individual Patient Pathway (iPP) describes the journey patients take through his/ her illness experience and includes not only the health care events they choose to engage in, but also the life events that shape their choices. We seek to develop better concepts and theoretical models to understand and evaluate iPPs.
The PATH project addresses what an iPP is, how it can be described, classified and whether some pathways are associated with better health outcomes. The insights offered through the qualitative work is used to develop quantitative methodology.
We recruited 10 cancer patients to phase1 of the study, 1 dropped out. We have qualitative one-year follow-up of 9 patients with interviews, diaries and questionnaire data. All data have been transcribed ad verbatim, and translated to English for the purpose of sharing them with our international research partners in Canada and the USA.
The preliminary analyses clarified that theoretical concepts for understanding and evaluating the Patient Pathway are lacking. It is unclear how health care packages should be evaluated, how the patients context should be understood, and which forces shape the patient pathway. We work on theoretical and methodological understanding in terms of the following main themes:
We have focused on following areas of research:
- Evaluation of the Patient pathway A theoretical work on 1) the goals of the patient pathway, and 2) how health care ought to proceed towards those goals. Publication:
Berntsen GKR, Gammon D, Steinsbekk A, Salomonsen A, Foss N, Ruland C, Fønnebø V, How do we deal with multiple goals for care within an individual patient trajectory? A document content analysis of health service research papers on goals for care. BMJ Open, 2015;5:e009403.doi:10.1136/bmjopen-2015-009403
- "Supportive care for patients with disrupted lives before cancer diagnosis". Patients who have experienced disruptive life events before cancer diagnosis is a special sub-group with different needs. Based on interview- and work-shop data we explore these patients’ accounts of how they shaped their individual patient pathways. Lead: A Salamonsen. Publication:
Anita Salamonsen, Mona A. Kiil, Agnete Kristoffersen, Trine Stub, Gro Berntsen. "“My cancer is not my deepest concern”: Life course disruption influencing patient pathways and healthcare needs among persons living with colorectal cancer". Patient Preferences and Adherence. In Press. Submitted 14 mar 2016
- Complementary and alternative medicine (CAM) in cancer patients’ care: Patients’ stories about their ongoing work to shape as good a life as possible during cancer illness and treatment with CAM”:
Quantitative patient pathways methods: Patient workshop in sept 2013. Patients gave input on 1) How would they like their patient pathway to be visually presented to them? 2) What questions were important about their own pathway? Based on theoretical and workshop input we created a web-survey for patient evaluation of their own iPP.
The online tool has in 2014 been tested in two patient groups in a close collaboration with the PASTAS-study (NFR-grant # 213973): 1)The PATH study group with extensive review and feedback from patients on the questionnaire. 2) A group of 13000 patients with chronic conditions.
This study is part of an international collaboration of four research groups situated at universities of Trondheim in Norway, Calgary and Vancouver in Canada, and Arizona and Michigan in USA.