Patient perspective on cancer care funding

Improvement in survival (a.k.a. efficiacy) clearly are important, but what other factors matter?  According to a systematic literature review by MacLeod, Harris and Mahal (2016), these factors include:

patients favour funding for cancer medicines that improve health outcomes demonstrated by ‘clinical efficacy’ [Oh et al.], ‘prolonged survival’ [Goldman et al., Seabury et al. Lakdawalla et al.] and/or ‘quality-of-life benefits’ [Oh et al.], including ‘relief or prevention of symptoms or complications of disease’, or offer ‘potential survival’, reflecting the ‘value of hope’ for a response to cancer drug treatment [Seabury et al. Lakdawalla et al.].

Tailoring the medications to individual need [Burgoyne et al. Jenkins et al.] mattered as did protecting the patient from financial burden also mattered to patients.

These patients considered that cost should not be a consideration in cancer drug funding decisions, once treatment has commenced, as their government has a moral obligation to maintain the ‘continuum of care’, and should not apply rationing by withholding funding for potentially life-saving or life-extending medicines [Jenkins et al., Lakdawalla et al.]

The general public’s preferences are similar, but not identical to cancer patients.

Like patients, the public prioritizes funding for cancer treatments that are ‘effective’ and ‘life-saving’, ‘life-extending’ and/or offer ‘improved life quality to individual patients’ [O’Shea et al. , Linley et al. , Burgoyne et al.]. Unlike patients, who are individually focussed, the public also supports funding cancer medicines that offer ‘significant innovation’ (‘effectiveness’) or ‘wider societal benefits’ (e.g. reduced caregiver burden) [Gallego et al., O’Shea et al., Burgoyne et al.]. The public has a sense of solidarity with cancer patients, and prioritizes investment in innovations for people with cancer, asthma and disabilities over those with drug addiction or obesity [Erden et al.]…The public also favours funding treatments for those with high risk and increased vulnerability (e.g. high mortality risk), and for patients with prior cancer [O’Shea et al., Burgoyne et al.]….Similar to patients, the public values new cancer drugs when there are no other options [Mileshkin et al.].

Many of these patients are also willing to pay increased insurance premiums to cover expensive, but effective treatments [Romley et al.]

In contrast, the authors found that payers generally focused on value, which included “health outcomes and benefits” and how these benefits compare to cost.  Payers did consider the treatment landscape in terms of whether there was unmet need (i.e., few treatments available).  In addition, “financial constraints, political aspects, and stakeholder interests and pressure” also played a role in their decisions as well as whether the treatment was life-saving.

When comparing these criteria for patients, the general public, and payers, the authors summarize their findings as follows:

…payers consider the broadest range of criteria (35), across all categories), the general public considers a moderate number of criteria (24), and patients consider fewer criteria (12).  All three stakeholders were aligned on only eight funding criteria—which primarily encompassed the notions of funding effective, life-saving treatments that can provide patient-relevant health benefits to individuals in need…However, patients (and the general public) also consider ‘access to information’, ‘autonomy in decision making’ and the ‘value of hope’, but we found no evidence that payers also share these considerations.

Source:

• MacLeod TE, Harris AH, Mahal A. Stated and Revealed Preferences for Funding New High-Cost Cancer Drugs: A Critical Review of the Evidence from Patients, the Public and Payers. Patient. 2016 Jun;9(3):201-22. doi: 10.1007/s40271-015-0139-7.

• Gallego G, Taylor SJJ, McNeill P, Brien JEE. Public views on priority setting for high cost medications in public hospitals in Australia. Heal. Expect. 2007;10:224–35.

• O’Shea E, Gannon B, Kennelly B. Eliciting preferences for resource allocation in mental health care in Ireland. Health Policy. 2008;88:359–70.

• Romley JA, Sanchez Y, Penrod JR, Goldman DP. Survey results show that adults are willing to pay higher insurance premiums for generous coverage of specialty drugs. Health Aff (Millwood). 2012;31:683–90.

• Mileshkin L, Schofield PE, Jefford M, Agalianos E, Levine M, Herschtal A, et al. To tell or not to tell: the community wants to know about expensive anticancer drugs as a potential treatment option. J Clin Oncol. 2009;27:5830–7.

• Linley WGG, Hughes DAA. Societal views on NICE, Cancer Drugs Fund and Value-Based Pricing criteria for prioritizing medicines: a cross-sectional survey of 4118 adults in Great Britain. Health Econ. 2012;22:948–64.

• Erdem S, Thompson C. Prioritising health service innovation investments using public preferences: a discrete choice experiment. 2014;14:1–14.

• Burgoyne CB. Distributive justice and rationing in the NHS: framing effects in press coverage of a controversial decision. J Community Appl Soc Psychol. 1997;7:119–36.

• Jenkins VA, Trapala I, Parlour L, Langridge C, Fallowfield L. The views of patients and the general public about expensive anti-cancer drugs in the NHS: a questionnaire-based study. J R Soc Med Sh Rep. 2011;2:69.

• Oh D-Y, Crawford B, Kim S-B, Chung H-C, McDonald J, Lee. SY, et al. Evaluation of the willingness-to-pay for cancer treatment in Korean metastatic breast cancer patients: a multicenter, cross-sectional study. Asia Pac J Clin Oncol. 2012;8:282–91.

• Goldman DP, Jena AB, Lakdawalla DN, Malin JL, Malkin JD, Sun E. The value of specialty oncology drugs. Health Serv Res. 2010;45:115–32.

• Seabury SA, Goldman DP, Maclean JR, Penrod JR, Lakdawalla DN. Patients value metastatic cancer therapy more highly than is typically shown through traditional estimates. Health Aff (Millwood). 2012;31:691–9.

• Lakdawalla DN, Romley JA, Sanchez Y, Maclean JR, Penrod JR, Philipson T. How cancer patients value hope and the implications for cost-effectiveness assessments of high-cost cancer therapies. Health Aff (Millwood). 2012;31:676–82