Introduction

Webcast archive: What is a QALY and why should you care?

This week, we discuss different ways to calculate the cost-effectiveness of health care interventions, and the effect of these analyses on people with disabilities.

Webcast archive: What is a QALY and why should you care?

In this episode of Euthanasia & Disability, Amy Hasbrouck & Christian Debray discuss:

  • What is a QALY and why should you care?
  • Announcement: special webcast December 6

Please note that this text is only a script and that our webcast contains additional commentary.

WHAT IS A QALY AND WHY SHOULD YOU CARE?

  • This is a Callie [on the video, we present our tricolour cat].  She has nothing to do with our webcast topic, except that her name sounds like the acronym for our topic, which is “Quality-Adjusted Life Years,” or QALYs.
  • QALYs are one tool used in Health Technology Assessment, which is defined in a Canadian report as “the systematic and unbiased [?] evaluation of the efficacy, cost-effectiveness, and socio-economic consequences of drugs, devices, therapies, diagnostics, and health care systems.” QALYs are part of the process for calculating if a medical intervention is cost-effective.
  • The Partnership to Improve Patient Care in the United States reports that health care spending as a percentage of the U.S. GDP (Gross Domestic Product) has increased from 10% in 1984 to 18% or $3.2 trillion in 2015.  The Canadian Institute for Health Information estimates Canada will spend $264 billion on health care in 2019, or 11.6% of GDP.
  • The National Council on Disability (NCD) explains that QALYs try to measure both how long a treatment extends life, and how it affects a person’s Health Related Quality of Life (HRQoL). While it’s pretty easy to figure out if a treatment extends life, measuring its impact on quality of life is more complicated. HRQoL can include individual factors like mood, energy, disease, fitness, health risks and income, plus social factors like indoor air pollution, flu severity, accessibility, availability of disability services and supports and workplace safety.
  • QALYs use a mathematical formula to express quality of life to a single number even though it is affected by a wide range of problems, medical interventions and outcomes.  So while it would be possible to compare the impact on quality of life of chemotherapy versus radiation as treatments of cancer (like comparing apples to oranges), it’s much harder to compare chemotherapy for cancer against surgery to repair a cleft palate (like comparing apples to dancing).
  • The QALY rates the value of life with a disability as a percentage of the value of life without a disability.  Hint: it never comes out to more than 100%. The calculation assumes that a year in “perfect health” (assigned a value of 1) is better than being dead (given a value of 0).  Things get messy when the points in between are calculated. QALYs usually evaluate the worth of life with a disability based on the preferences of people from the general (non-disabled) population.
  • NCD points out three main ethical problems with applying QALYs to people with disabilities: “(1) that disability may not actually reduce quality of life; (2) that QALYs discriminate against people with disabilities; (3) that QALYs fail to account for differences between what patients with the same condition value.”
    • QALYs based on non-disabled preferences don’t take into account how adjusting to having a disability affects a person’s feelings about their quality of life.
    • QALYs place greater emphasis on procedures that restore or maintain perfect health.  Because people with disabilities or chronic conditions are seen as having a lower potential for health, treatments that extend their lives or improve their quality of life may result in fewer QALYs than the same treatment given to a non-disabled person, even if the treatment provides an equal benefit.
    • Also, because QALY formulas often include average life expectancy, and many disabling conditions reduce the number of years people live, people with disabilities and older people will get a lower QALY score for the drug or treatment they need.
    • There are many different scales used to calculate a QALY, that can produce widely varying results. A study of how patients rated the value of hip replacements compared four QALY scales, which yielded four different values; from 0.10 to 0.22.  Since the proof of a scientific theory is based in part on whether results can be reproduced, it would be a stretch to say that the calculation of the QALY is “scientific.”
    • Single number scores do a poor job at pinpointing what people want. As the Partnership for Improved Patient Care noted: “An intervention that restores a patient to full health for one full year would be assigned a QALY score of ‘1.’ At the same time, a different intervention that provides two years of moderate health could also result in a value of ‘1.’ Yet these are two very different outcomes.”
  • In 1990, the Oregon Health Services Commission used QALYs to rank the relative value of healthcare condition-treatment pairs to determine what services would be covered by government-funded health insurance (Medicaid). The final recommendations included some strange priorities; for example, tooth capping ranked higher than emergency appendectomy.  In 1992 the federal department of Health and Human Services rejected the proposed list because that it discriminated against people with disabilities (in violation of the Americans with Disabilities Act). However according to the PIPC white paper “Oregon continues to use a modified prioritized list that does take cost and cost-effectiveness into consideration.”
  • Because of problems with QALYs, the Patient Centered Outcomes Research Institute (PCORI) in the U.S. is prohibited by law from using “a dollars-per-quality adjusted life year … as a threshold to establish what type of health care is cost effective or recommended.”  The law that prohibits using QALYs is the Affordable Care Act, a.k.a. Obamacare.
  • The United Kingdom’s National Institute for Health and Care Excellence (NICE) uses a QALY-based system. The NCD notes that health outcomes for people with some “chronic illnesses and disabilities (such as … lung cancer) are notably worse in the United Kingdom than in the United States.”  France’s National Authority for Health also uses Cost Utility Analysis and QALYs to evaluate health care spending.
  • Information about the use of QALYs in Canada isn’t easy to find.  A search on the website of the Canadian Institute for Health Information turned up only one document that mentioned QALYs, even though the leading organizations that evaluate drugs, medical services and devices use QALYs in their evaluation process.
  • In Canada, where each province manages its own health care system, there is no national standard.  Several non-governmental organizations recommend policy on health care to provincial leaders.
    • The Canadian Agency for Drugs and Technologies in Health (CADTH) was established in 1989, and has become the leader in evaluating medications, health services and technologies.  The latest CADTH guidelines (from 2017) call for calls for using QALYs in the “measurement and valuation of health.” “A QALY is the recommended outcome to capture health effects when conducting a cost-utility analysis (CUA).”
    • The CADTH is part of a pan-Canadian Health Technology Assessment Collaborative, which includes, Quebec’s l’Institut national d’excellence en santé et services sociaux (INESSS), Alberta’s Institute of Health Economics (IHE), and Health Quality Ontario (HQO).  These organizations use QALYs in determining what drugs, services and devices will be offered.
  • This is a really big and important subject.  It has all the ingredients that make a topic unpleasant to learn about: math, jargon, acronyms, detail, academic writing, government policy, information overload, discrimination and large, faceless organizations that no one has ever heard of before.  The take-away message would be that there is a select group of people who are making decisions about what drugs or health services are covered. The people who develop these policies:
    • Work for organizations that are not accountable to voters or the public;
    • Most likely represent privileged positions in society;
    • Probably don’t know (and maybe don’t care) that the methods they’re using put disabled people and other minorities at a disadvantage;
    • Are making decisions that can have a life-or-death impact on us without our being aware.
  • We’ve provided some links for more information about measuring the economic value of health care.
  • Understanding Summary Measures Used to Estimate the Burden of Disease: All about HALYs, DALYs and QALYs.
  • NCD Report: Quality-Adjusted Life Years and the Devaluation of Life with Disability
  • PIPC White Paper — Measuring Value in Medicine: Uses and Misuses of the QALY
  • Guidelines for the Economic Evaluation of Health Technologies, 4th Edition from the Canadian Agency for Drugs and Technologies in Health
  • Health Technology Assessments: Methods and Process Guide from Health Quality Ontario
  • Choices in Methods for Economic Evaluation at the Health Authority of France
  • PROMs (Patient-Reported Outcome Measures) Background Document (2015) from the Canadian Institute for Health Information

ANNOUNCEMENT: SPECIAL WEBCAST DECEMBER 6

  • TVNDY is planning to present our December 6 webcast in the form of online discussions, using Zoom conferencing software.
  • Several events have conspired to prompt us to (re)try this innovation.
    • The ruling of the Québec Superior court in the Truchon case which declared the “reasonably foreseeable natural death” eligibility criterion unconstitutional;
    • Parliament’s plan to modify the medical assistance in dying statute to conform to the Truchon decision;
    • The five year review of the MAiD law, which may or may not happen, and will probably be limited because the first official MAiD report isn’t due out until March of next year.
    • More cases reported in the media of problems with MAiD and other life-ending practices (like people being pressured to sign “do not resuscitate” orders).
  • When we launched our webcast in 2013, we imagined it as an online discussion, but we’ve never had a big enough audience to make it happen that way.  So we’re trying it again, as a periodic event, in the hopes that, with a few years experience and more than 400 English and French webcasts to draw on, we can create a supportive environment to talk about these very difficult situations. Details coming soon.