Patient Pathways in cancer 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.
Our 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.
Methods
We recruited 10 cancer patients to phase 1 of the study, 1 of these 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, Gro Karine Rosvold; Gammon, Dedee B.; Steinsbekk, Aslak; Salomonsen, Anita; Foss, Nina; Ruland, Cornelia; Fønnebø, Vinjar: 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: Salamonsen, Anita.
Publication: Salamonsen, Anita; Kiil, Mona Anita; Kristoffersen, Agnete Egilsdatter; Stub, Trine; Berntsen, Gro Karine Rosvold: "“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? and: 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.
Ph.D.-project as a part of PATH
Frank Hansen is finishing his Ph.D. as a part of PATH. He has contributed to the three following published articles:
Hansen, Frank; Berntsen, Gro Karine Rosvold; Salamonsen, Anita:
“What matters to you?” A longitudinal qualitative study of Norwegian patients’ perspectives on their pathways with colorectal cancer. Int J Qual Stud Health Well-Being, 2018.
Hansen, Frank; Berntsen, Gro Karine Rosvold; Salamonsen, Anita:
Patient pathways as social drama: A qualitative study of cancer trajectories from the patient’s perspective. Int J Qual Stud Health Well-Being, 2019.
Hansen, Frank; Berntsen, Gro Karine Rosvold; Salamonsen, Anita:
Medical pluralism in the aftermath of cancer. Health seeking actions and cancer patients’ construction of trajectories to healing. Anthropology & Medicine, 2019.
Hansen has submitted the following thesis for evaluation: What Really Matters: A longitudinal qualitative study of pathways with colorectal cancer from Norwegian patients’ perspectives.
Hansen's part is expected to be completed during 2021.
Publications
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Publication place and -time |
Authors and title |
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8th international conference on the Society for integrative oncology, november 10-12, 2011, Cleveland, Ohio, USA. |
Balneaves, Lynda G.; Mulkins, Andrea L.; Verhoef, Marja J.; Warber, Sarah; McKenzie, Emily; Koithan, Mary: The Experience of Integrative Oncology |
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8th international conference on the Society for integrative oncology, november 10-12, 2011, Cleveland, Ohio, USA. |
Warber, Sarah; Kialko, M.; Lachance, Lynda; Mulkins, Andrea L.; McKenzie, Emily; Balneaves, Lynda G.; Koithan, Mary; Berntsen, Gro Karine Rosvold; Verhoef, Marja J.: Modification of the International CAM Questionnaire (I-CAM-Q) for use in a longitudinal study of CAM use and patient decision making. |
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8th international conference on the Society for integrative oncology, november 10-12, 2011, Cleveland, Ohio, USA |
Verhoef, Marja J.; Mulkins, Andrea L.; McKenzie, Emily; Balneaves, Lynda G.; Koithan, Mary; Warber, Sarah; Berntsen, Gro Karine Rosvold: Pathways of cancer treatment and care: Making sense of CAM use and its meaning. |
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Poster presentation. International society of quality in health (ISQUA). Edinburgh, UK, 13-16th October 2013. |
Berntsen, Gro Karine Rosvold; Gammon, Deede B.; Ruland, Cornelia; Fønnebø, Vinjar: Developing methods to capture the patient pathways experience. |
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Presentation at workshop – Integrated care unit at NST, Tromsø, 10th. April 2013 |
Berntsen, Gro Karine Rosvold: What is quality in a patient pathway perspective, and what are the consequneces for our ICT-tools? [Hva er kvalitet i pasientforløp og hva betyr svaret for IKT-verktøyene våre?] |
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National network for the implemenation of the «Norwegian Coordination reform». [Nasjonalt nettverk for implementering av Samhandlingsreformen] Tromsø 11th of June 2013 |
Berntsen, Gro Karine Rosvold: «A patient centered health service: The Chronic Care model” [En pasientsentrert helsetjeneste. «The Chronic Care model»]. |
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Working group for the Patient in a virtual team». [Arbeidsgruppe for “Pasienten i virtuelt team”]. Tromsø. 3rd june 2013. |
Berntsen, Gro Karine Rosvold: Quality in the patient pathway. [Kvalitet i pasientforløp] |
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The education conference. [Utdanningskonferansen ved Universitetet I Tromsø]. 25th April 2013. |
Berntsen, Gro Karine Rosvold: A patient centered health service. [En pasientsentrert helsetjeneste. «The chronic Care model»] |
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The national Norm conference for information security. [Den nasjonale norm-konferansen for Informasjonsikkerhet.] Arrangert av Helse- og omsorgdepartementet. Tromsø, 31st October 2013 |
Berntsen, Gro Karine Rosvold: The patient perspective of integrated care and informational continuity. [Pasientperspektivet i samhandling og informasjonsflyt.] |
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Innovation meeting [Innomed møteplass], Oslo 6. November 2013 |
Berntsen, Gro Karine Rosvold: What is quality in a patient pathways perspective, and what are the consequences for our ICT-tools? [Hva er egentlig kvalitet i pasientforløp? - og hva betyr svaret for IKT-verktøyene våre?] |
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Workshop Copenhagen University, Danmark. 26. November 2013 |
Berntsen, Gro Karine Rosvold: What is quality in a patient pathways perspective, and what are the consequences for our ICT-tools? [Hva er egentlig kvalitet i pasientforløp? - og hva betyr svaret for IKT-verktøyene våre? ] |
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Workshop, workingroup for Patient Centered Teams. [Workshop, Arbeidsgruppen for “Pasientsentrerte helsetjenesteteam”]. Tromsø 9th December 2013 |
Berntsen, Gro Karine Rosvold: What is quality in a patient pathways perspective, and what are the consequences for the Patient centered Team project? [Hva er egentlig kvalitet i pasientforløp? - og hva betyr svaret for TUT og Hotline? ] |
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Life-based and art-based research: exploring their collective, social and political potential The Annual Conference in 2015 will be held in Italy at Università di Milano Bicocca From Thursday 5th to Sunday 8th March 2015 |
Salamonsen, Anita; Berntsen, Gro Karine Rosvold; Nesby, Linda H.; Kiil, Mona Anita: Life stories as tools to change conventional health care systems and individual illness experiences: Examples and reflections from a Scandinavian context |
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Journal of Complementary and Integrative Medicine 2015 Received November 17, 2014; accepted July 23, 2015 |
Mulkins, Andrea L.; McKenzie, Emily; Balneaves, Lynda G.; Salamonsen, Anita; Verhoef, Marja J.: From the conventional to the alternative: Exploring patients’ pathways of cancer treatment and care |
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Poster presentation - The International Research Congress on Integrative Medicine and Health (IRCIMH), May 13-16 2014, Florida, USA |
Foss, Nina; Berntsen, Gro Karine Rosvold: Cancer Patients’ Stories about CAM-use: The Ongoing Work to Shape as Good a Life as Possible during Cancer Illness and Treatment, |
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Submitted to Qualitative Health Research jan 2015. |
Foss, Nina; Berntsen, Gro Karine Rosvold; Salamonsen, Anita: Cancer patients' trajectories in complementary therapies. |
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2015 In press. BMJ Open. |
Berntsen, Gro Karine Rosvold; Gammon Deede B.; Steinsbekk, Aslak; Salamonsen, Anita; Foss, Nina; Ruland, Cornelia; Fønnebø, Vinjar: 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 |
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Poster presentation at: The Society for Integrative Oncology (SIO) 12thinteranational Conference in Boston, MA, USA. 15th of November 2015. |
Salamonsen, Anita; Kiil, Mona Anita; Kristoffersen, Agnete Egilsdatter; Berntsen, Gro Karine Rosvold:. Understanding patient pathways and health care needs among persons living with colorectal cancer. |
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The international Society of Quality in health care (ISQUA), 30th ISQUA conference, Doha Qatar, 4-7th of october 2015, Oral presentation.
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Berntsen, Gro Karine Rosvold; Gammon, Deede B.; Høyem, Anette; Ruland, Cornelia: The perspective of patients with complex long-term pathways: A mixed method analysis in light of recommended practice |
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Patient Preference and Adherence 2016; Volum 10. ISSN 1177-889X.s 1591 - 1600.s doi: 10.2147/PPA.S108422
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Salamonsen, Anita; Kiil, Mona Anita; Kristoffersen, Agnete Egilsdatter; Stub, Trine; Berntsen, Gro Karine Rosvold: My cancer is not my deepest concern: Life course disruption influencing patient pathways and health care needs among persons living with colorectal cancer. |
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| Anthropology & Medicine 2020; Volum 27 (3). ISSN 1364-8470.s doi: 10.1080/13648470.2019.1676637 |
Hansen, Frank; Berntsen, Gro Karine Rosvold; Salamonsen, Anita: Medical pluralism in the aftermath of cancer: health seeking actions and cancer patients’ shaping of trajectories to healing. |
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| International Journal of Qualitative Studies on Health and Well-being 2019; Volum 14 (1). ISSN 1748-2623.s doi: 10.1080/17482631.2019.1639461. |
Hansen, Frank; Berntsen, Gro Karine Rosvold; Salamonsen, Anita: Patient pathways as social drama: A qualitative study of cancer trajectories from the patient’s perspective. |
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| International Journal of Qualitative Studies on Health and Well-being 2018; Volum 13 (1). ISSN 1748-2623.s 1 - 11.s doi: 10.1080/17482631.2018.1548240. |
Hansen, Frank; Berntsen, Gro Karine Rosvold; Salamonsen, Anita: "What matters to you?” A longitudinal qualitative study of Norwegian patients’ perspectives on their pathways with colorectal cancer. |
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| Journal of Complementary and Integrative Medicine 2016; Volum 13 (1). ISSN 1553-3840.s 51 - 64.s doi: 10.1515/jcim-2014-0070. |
Mulkins, Andrea; McKenzie, Emily; Balneaves, Lynda; Salamonsen, Anita; Verhoef, Marja: From the conventional to the alternative: Exploring patients' pathways of cancer treatment and care. |
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| Best Practice Nordic Onkologi/Hematologi 2019 s. 38-40. UiO, UiT. |
Salamonsen, Anita: «Hva er viktig for deg?» Pasientperspektiver på pasientforløp og kreftomsorg blant personer som lever med endetarmskreft. |
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| Kreftsykepleien 2017; Volum 1. s. 12-19. UiT. |
Salamonsen, Anita; Bakken, Solveig Rostøl; Hansen, Frank; Berntsen, Gro Karine Rosvold: Pasientforløp og behandlingsbehov sett fra pasienters perspektiv. |
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| Sykepleien 2017. UiT. |
Salamonsen, Anita; Bakken, Solveig Rostøl; Hansen, Frank; Berntsen, Gro Karine Rosvold: Pasientforløp og behandlingsbehov sett fra pasienters perspektiv. |
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| Kreftforeningen - Verktøykasse for helsepersonell (Youtube); 2020, UiT. |
Salamonsen, Anita; Bakken, Solveig Rostøl: Pasientperspektiver: Hvorfor bruker kreftpasienter alternativ behandling?. |
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| BMJ Open. 2015;5(12):1-8 |
Berntsen, Gro Karine Rosvold:, Gammon, Deede B.; Steinsbekk, Aslak; Salamonsen, Anita; Foss, Nina; Ruland, Cornelia et al: 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. |
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The project is lead by Gro Berntsen.
