Lead Researcher(s): Helen McTaggart-Cowan
Lead Institution: BC Cancer
Co-Investigators: Colene Bentley, Philippa Hawley, Sara Izadi-Najabadi, Adam Raymakers, Stuart Peacock
ARCC Program Area(s): Societal Values and Public Engagement
Funding Term: 2019-2021
Value assessment frameworks have been developed to guide decision making about oncology treatments. The goal of these frameworks is to objectively delineate the value of a treatment by calculating the cost of various options in comparison to the anticipated health benefit1. Organizations including the American Society of Clinical Oncology (ASCO)2, European Society of Medical Oncology (ESMO)3, the National Comprehensive Cancer Network (NCCN)4, and Memorial Sloan Kettering Cancer Center5, have published such frameworks over the last five years. Typically, these frameworks are based on traditional economic analysis principles which include weighing the cost of treatment to clinical outcomes such as toxicity, survival and/or clinical benefit, and symptom palliation as derived from clinical trial information2. Thus, the value judgements incorporated into these frameworks very often reflect the standard economic and clinical attributes that decision-making bodies have defined6 .
Value frameworks are emerging at the same time as a shift toward patient centered health care. Core principles of patient centered care include the idea that patients are, at the forefront of their own health and care, retain control over their own choices, helped to make informed decisions, and that collaborative relationship between individuals, families, and health care systems are necessary to promote meaningful engagement7. Recent criticisms of value frameworks highlight they fall short of being patient centered as they may not reflect constructs of value as defined by patients, and there has been little patient engagement in their development8.
While the ideas of quality patient care and patient well-being are quantitatively incorporated into value frameworks, they may not necessarily address all the values and outcomes that are important to patients (e.g. functional changes, ability to work, ability to maintain social relationships, tolerability)1,8. In addition, if patients are to receive the treatment(s) they feel is best for them, value frameworks need to be built on a thorough understanding of the patient perspective and the views of treating clinicians or other experts involved in developing such frameworks1,8. Finally, the utility of value frameworks as a decision-making tool for patients has not been explored. To enhance the utility and patient centeredness of value frameworks, it is important to include the patient voice1,8. Thus, the aim of this study is to engage with patients and family caregivers to understand their perspectives of value assessment frameworks.
The specific research objectives are :
- To explore the perspectives of patients and family caregivers on value assessment frameworks including:
- How is the value of oncology treatment defined by patients?
- What elements of current value frameworks (ASCO and ESMO) reflect patient’s values?
- What other elements of determining the value of treatment should be included in value frameworks?
- How should frameworks be tailored to different patient groups/stages of disease?
- How do patients make trade-offs between different elements of value (e.g. how do patients consider mortality and/or morbidity against other considerations, such as value of hope, severity of disease, or convenience of treatment)?
- To explore patient’s view on the utility of these frameworks to guide decision making.
- Perfetto EM, Oehrlein EM, Boutin M, Reid S, Gascho E. Value to whom? The patient voice in the value discussion. Value in Health; 2017: 286-291. http://dx.doi.org/10.1016/j.jval.2016.11.014
- Schnipper LE, Davidson NE, Wollins DS et al. Updating the American Society of Clinical Oncology value framework: Revisions and reflections in response to comments received. J Clin Oncol; 2016: 34(4): 2925-2934. doi: 10.1200/jco.2016.68.2518
- Cherny NI, Sullivan R, Dafni U, et al. A standardized, generic, validated approach to stratify the magnitude of clinical benefit that can be anticipated from anti-cancer therapies: the European Society for Medical Oncology magnitude of clinical benefit scale (ESMO-MCBS). Annal Oncol; 2015: 1547-1573. doi:10.1093/annonc/mdv249
- National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) with NCCN Evidence Blocks. http://www.nccn.org/evidenceblocks/.
- Memorial Sloan Kettering Cancer Center. Welcome to Drug Abacus. http://www.drugabacus.org/drug-abacustool/.
- Addario BJ, Fadich A, Fox J et al. Patient value: Perspectives from the advocacy community. Health Expectations; 2018; 21: 57-63. doi:10.1111/hex.1262B
- Ministry of Health British Columbia. The British Columbia patient-centered care framework. 2015. Retrieved from https://www.health.gov.bc.ca/library/publications/year/2015_a/pt-centred-care-framework.pdf
- dosReis S, Butler B, Caicedo J, et al. Stakeholder-engaged derivation of patient-informed value elements. The Patient-Patient-Centered Outcomes Research; 2020: 13:611-621. doi: https://doi.org/10.1007/s40271-020-00433-8