Path. Patient Pathways in cancer care | NAFKAM

Path. Patient Pathways in cancer care

The journey a patient take through his/her illness experience, including life events.

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 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:

  1. 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

  1. "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

  1. 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.

Publications:

Publication place and time

Authors and title

8th international conference on the Society for integrative oncology, november 10-12, 2011, Cleveland, Ohio, USA.

 

Balneaves L, Mulkins A, Verhoef M, Warber S, McKenzie E, Koithan M, The Experience of Integrative Oncology

 

8th international conference on the Society for integrative oncology, november 10-12, 2011, Cleveland, Ohio, USA.

 

S Warber, M Bialko, L Lachance, A Mulkins, E McKenzie, L Balneaves, M Koithan, G Berntsen, M Verhoef.  Modification of the International CAM Questionnaire (I-CAM-Q) for use in a longitudinal study of CAM use and patient decision making.

 

8th international conference on the Society for integrative oncology, november 10-12, 2011, Cleveland, Ohio, USA

M Verhoef, A Mulkins, E McKenzie, L Balneaves, M Koithan, S Warber, G Berntsen.

Pathways of cancer treatment and care: Making sense of CAM use and its meaning.

 

Poster presentation. International society of quality in health (ISQUA). Edinburgh, UK, 13-16th October 2013.

Gro K Rosvold Berntsen , Deede Gammon , Cornelia Ruland , Vinjar Fønnebø. Developing methods to capture the patient pathways experience.

Presentation at workshop – Integrated care unit at NST, Tromsø, 10th. April 2013

GK Berntsen: 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?]

National network for the implemenation of the «Norwegian Coordination reform». [Nasjonalt nettverk for implementering av Samhandlingsreformen] Tromsø 11th of June 2013

Gro Berntsen. «A patient centered health service: The Chronic Care model” [En pasientsentrert helsetjeneste. «The chronic Care model»].

Workding group for the Patient in a virtual team». [Arbeidsgruppe for “Pasienten i virtuelt team”]. Tromsø. 3rd june  2013.

G Berntsen. Quality in the patient pathway. [Kvalitet i pasientforløp]

The education conference. [Utdanningskonferansen ved Universitetet I Tromsø]. 25th April 2013.

Gro Berntsen. A patient centered health service. [En pasientsentrert helsetjeneste. «The chronic Care model»]

The national Norm conference for information security. [Den nasjonale norm-konferansen for Informasjonsikkerhet.] Arrangert av Helse- og omsorgdepartementet. Tromsø, 31st October 2013

G Berntsen. The patient perspective of integrated care and informational continuity.  [Pasientperspektivet i samhandling og informasjonsflyt.]

Innovation meeting [Innomed møteplass], Oslo 6. November 2013

G Berntsen, 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?]

Workshop Copenhagen University, Danmark. 26. November 2013

Gro Berntsen. 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? ]

Workshop, workingroup for Patient Centered Teams. [Workshop, Arbeidsgruppen for “Pasientsentrerte helsetjenesteteam”]. Tromsø 9th December 2013

Gro Berntsen, 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? ]

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

Anita Salamonsen, Gro Berntsen, Linda H. Nesby, and Mona A. Kiil

Life stories as tools to change conventional health care systems and individual illness experiences: Examples and reflections from a Scandinavian context

Journal of Complementary and Integrative Medicine 2015

DOI 10.1515/jcim-2014-0070

Received November 17, 2014; accepted July 23, 2015

Andrea L. Mulkins*, Emily McKenzie, Lynda G. Balneaves, Anita Salamonsen

and Marja J. Verhoef .

From the conventional to the alternative:

exploring patients’ pathways of cancer

treatment and care

Poster presentation - The International Research Congress on Integrative Medicine and Health (IRCIMH), May 13-16 2014, Florida, USA

Nina Foss and Gro K.Rosvold Berntsen. Cancer Patients’ Stories about CAM-use: The Ongoing Work to Shape as Good a Life as Possible during Cancer Illness and Treatment,

Submitted to Qualitative Health Research jan 2015.

Foss, Berntsen, Salamonsen. Cancer patients' trajectories in complementary therapies.

2015 In press. BMJ Open.

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

Poster presentation at: The Society for Integrative Oncology (SIO) 12thinteranational Conference in Boston, MA, USA. 15th of November 2015.

A.Salamonsen,M. A. Kiil, A. Kristoffersen, G. Berntsen..Understanding patient pathways and health care needs among persons living with colorectal cancer.

The international Society of Quality in health care (ISQUA), 30th ISQUA conference, Doha Qatar, 4-7th of october 2015, Oral presentation.

 

G. K. R. Berntsen 1,*, D. B. Gammon 1, A. Høyem 1, C. Ruland 2

The perspective of patients with complex long-term pathways: A mixed method analysis in light of recommended practice

 

Project Manager: Gro Berntsen

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