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Toward the development of a comprehensive cancer experience measurement framework

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Abstract

A diagnosis of cancer and its treatment often have a profound impact on an individual’s health-related quality of life—affecting physical, psychological, social, occupational, and financial domains. Person-centered care (PCC)—defined as a respectful, responsive, and tailored approach that meets patients’ needs, values, and preferences—is becoming an integral part of comprehensive cancer care. The implementation of PCC into clinical practice provides benefits such as improvement in the quality of patient care, enhanced health-related outcomes, and significantly higher satisfaction with care. However, to guide and document more precisely the effects of PCC, various authors have argued that a more comprehensive measurement framework is needed. The primary goal of this paper is to present such an evolving framework based on extant evidence and developed in the context of a series of expert stakeholder meetings spearheaded by the Canadian Partnership Against Cancer (CPAC) that began in 2012. Developed collaboratively, the Cancer Experience Measurement Framework goes beyond existing patient experience frameworks by focusing on four key elements and related measures: the patient perspective, the family perspective, the combined patient-family perspective, and interactions with the healthcare system. In light of current healthcare trends promoting cancer self-management, patients as partners, and patient and family engagement in care, it is imperative that we conduct ongoing assessments using shared and psychometrically sound measures to ensure sound comparisons across settings, as well as better cancer-related processes and outcomes for indivduals affected by cancer.

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Acknowledgements

Production of the Cancer Experience Measurement Framework has been made possible through financial support from Health Canada through the Canadian Partnership Against Cancer (CPAC). In addition, CGL’s work is supported by the Christine and Herschel Victor/Hope & Cope Chair in Psychosocial Oncology at McGill University.

The authors would also like to acknowledge our colleagues who participated in the framework working group: Dr. Kathleen Douglas-England, Alberta Health Services; Dr. Riaz Alvi, Saskatchewan Cancer Agency; and patient/family representatives Louise Frederick, Saskatchewan, David McGinley, QEII Health Sciences Centre, Nova Scotia, and Elisabeth Ross, Ovarian Cancer Canada. We also would like to thank Saima Ahmed (Doctoral student under CGL) and Jacqueline Vachon (Research Manager, CGL) for editorial comments on earlier versions of the manuscript.

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Authors and Affiliations

  1. Department of Oncology and Ingram School of Nursing, Christine and Herschel Victor/Hope & Cope Research Chair in Psychosocial Oncology, McGill University, 680 Sherbrooke West, Room 1800, Montreal, QC, H3A 2M7, Canada

    Carmen G. Loiselle

  2. Segal Cancer Centre, Jewish General Hospital, 3755 Côte Sainte-Catherine Rd, Pav. E-748, Montreal, QC, H3T 1E2, Canada

    Carmen G. Loiselle

  3. Oncology Nursing Research and Education & Senior Scientist, Princess Margaret Cancer Centre, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada

    Doris Howell

  4. Person-Centred Perspective Portfolio, Canadian Partnership Against Cancer, Toronto, ON, Canada

    Irene Nicoll

  5. Person-Centred Perspective Portfolio, Canadian Partnership Against Cancer, University of Toronto, Toronto, ON, Canada

    Margaret Fitch

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  1. Carmen G. Loiselle
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  2. Doris Howell
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Corresponding author

Correspondence to Carmen G. Loiselle.

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Conflict of interest

Margaret Fitch received renumeration as a consultant from the Canadian Partnership Against Cancer in relation to this work.

Irene Nicoll received renumeration as a staff member from the Canadian Partnership Against Cancer in relation to this work.

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Loiselle, C.G., Howell, D., Nicoll, I. et al. Toward the development of a comprehensive cancer experience measurement framework. Support Care Cancer 27, 2579–2589 (2019). https://doi.org/10.1007/s00520-018-4529-y

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