QALYs and ambulatory status: societal preferences for healthcare decision making

References

• Sanders GD, Neumann PJ, Basu A, et al. Recommendations for conduct, methodological practices, and reporting of cost-effectiveness analyses: second panel on cost-effectiveness in health and medicine. JAMA. 2016;316(10):1093–1103.
   PubMed Web of Science ®Google Scholar
• National Council on Disability. Quality-adjusted life years and the devaluation of life with disability; 2019.
   Google Scholar
• Institute for Clinical and Economic Review. Cost-effectiveness, the QALY, and the evLYG. 2021; [cited 2021 Jun 11]; Available from: https://icer.org/our-approach/methods-process/cost-effectiveness-the-qaly-and-the-evlyg/.
   Google Scholar
• Singer P, McKie J, Kuhse H, et al. Double jeopardy and the use of QALYs in health care allocation. J Med Ethics. 1995;21(3):144–150.
   PubMed Web of Science ®Google Scholar
• Räsänen P, Krootila K, Sintonen H, et al. Cost-utility of routine cataract surgery. Health Qual Life Outcomes. 2006;4(1):74.
   PubMed Web of Science ®Google Scholar
• Scott AW, Bressler NM, Ffolkes S, et al. Public attitudes about eye and vision health. JAMA Ophthalmol. 2016;134(10):1111.
   PubMed Web of Science ®Google Scholar
• McKie J, Richardson J. Social preferences for prioritising the treatment of disabled and chronically ill patients: beyond the order effect. Health Econ Policy Law. 2019;14(4):443–467.
   PubMed Web of Science ®Google Scholar
• Ubel PA, Richardson J, Prades JL. Life-saving treatments and disabilities. Int J Technol Assess Health Care. 1999;15(4):738–748.
   PubMed Web of Science ®Google Scholar
• Harris J. QALYfying the value of life. J Med Ethics. 1987;13(3):117–123.
   PubMed Web of Science ®Google Scholar
• Cubbon J. The principle of QALY maximisation as the basis for allocating health care resources. J Med Ethics. 1991;17(4):181–184.
   PubMed Web of Science ®Google Scholar
• Harris J. Unprincipled QALYs: a response to cubbon. J Med Ethics. 1991;17(4):185–188.
   PubMed Web of Science ®Google Scholar
• Dolan P. Modeling valuations for EuroQol health states. Medical Care. 1997;35(11):1095–1108.
   PubMed Web of Science ®Google Scholar
• van Hout B, Janssen MF, Feng Y-S, et al. Interim scoring for the EQ-5D-5L: mapping the EQ-5D-5L to EQ-5D-3L value sets. Value Health. 2012;15(5):708–715.
   PubMed Web of Science ®Google Scholar
• Bray N, Spencer LH, Edwards RT. Preference-based measures of health-related quality of life in congenital mobility impairment: a systematic review of validity and responsiveness. Health Econ Rev. 2020;10(1):9.
   PubMed Web of Science ®Google Scholar
• Bray N, Spencer LH, Tuersley L, et al. Development of the MobQoL patient reported outcome measure for mobility-related quality of life. Disabil Rehabil. 2021;43(23):3395–3404.
   PubMed Web of Science ®Google Scholar
• NICE. Ataluren for treating Duchenne muscular dystrophy with a nonsense mutation in the dystrophin gene; Final Scope; 2015.
   Google Scholar
• Muscular Dystrophy Campaign. Wheelchair provision for children and adults with muscular dystrophy and other neuromuscular conditions best practice guidelines. 2011.
   Google Scholar
• Lloyd AJ, Thompson R, Gallop K, et al. Estimation of the quality of life benefits associated with treatment for spinal muscular atrophy. Clinicoecon Outcomes Res. 2019;11:615–622.
   PubMed Web of Science ®Google Scholar
• Szabo SM, Audhya IF, Malone DC, et al. Characterizing health state utilities associated with duchenne muscular dystrophy: a systematic review. Qual Life Res. 2020;29(3):593–605.
   PubMed Web of Science ®Google Scholar
• Cameron D, Ubels J, Norström F. On what basis are medical cost-effectiveness thresholds set? Clashing opinions and an absence of data: a systematic review. Glob Health Action. 2018;11(1):1447828–1447828.
   PubMed Web of Science ®Google Scholar
• Jones-Lee MW, Hammerton M, Philips PR. The value of safety: results of a national sample survey. Economic J. 1985;95(377):49–72.
   Web of Science ®Google Scholar
• Karimi M, Brazier J, Paisley S. Are preferences over health states informed? Health Qual Life Outcomes. 2017;15(1):105.
   PubMed Web of Science ®Google Scholar
• McPherson K, Myers J, Taylor WJ, et al. Self-valuation and societal valuations of health state differ with disease severity in chronic and disabling conditions. Med Care. 2004;42(11):1143–1151.
   PubMed Web of Science ®Google Scholar
• Ubel PA, Loewenstein G, Jepson C. Whose quality of life? A commentary exploring discrepancies between health state evaluations of patients and the general public. Qual Life Res. 2003;12(6):599–607.
   PubMed Web of Science ®Google Scholar
• Lulé D, Zickler C, Häcker S, et al. Life can be worth living in locked-in syndrome. Prog Brain Res. 2009;177:339–351.
   PubMed Web of Science ®Google Scholar
• Ubel PA, Spranca MD, Dekay ML, et al. Public preferences for prevention versus cure: what if an ounce of prevention is worth only an ounce of cure? Med Decis Making. 1998;18(2):141–148.
   PubMed Web of Science ®Google Scholar
• Cookson R, Dolan P. Public views on health care rationing: a group discussion study. Health Policy. 1999;49(1–2):63–74.
   PubMed Web of Science ®Google Scholar
• Dolan P, Cookson R. A qualitative study of the extent to which health gain matters when choosing between groups of patients. Health Policy. 2000;51(1):19–30.
   PubMed Web of Science ®Google Scholar
• Rowen D, Brazier J, Mukuria C, et al. Eliciting societal preferences for weighting QALYs for burden of illness and end of life. Med Decis Making. 2016;36(2):210–222.
   PubMed Web of Science ®Google Scholar
• Toumi M, Millier A, Cristeau O, et al. Social preferences for orphan drugs: a discrete choice experiment among the french general population. Front Med. 2020;7:323–323.
   Web of Science ®Google Scholar
• Rivlin MM. Why the fair innings argument is not persuasive. BMC Med Ethics. 2000;1(1):1.
   Google Scholar
• Nord E, Pinto JL, Richardson J, et al. Incorporating societal concerns for fairness in numerical valuations of health programmes. Health Econ. 1999;8(1):25–39.
   PubMed Web of Science ®Google Scholar
• Pearson SD. Why the coming debate over the QALY and disability will be different. J Law Med Ethics. 2019;47(2):304–307.
   PubMed Web of Science ®Google Scholar
• Campbell JD, Whittington MD, Rind DM, et al. Alternative pricing models for remdesivir and other potential treatments for COVID-19; updated report. Institute for Clinical and Economic Review; 2020.
   Google Scholar
• Lee SJ, McQueen RB, Beinfeld M, et al. Anti B-cell maturation antigen CAR T-cell and antibody drug conjugate therapy for heavily pre-treated relapsed and refractory multiple myeloma; final evidence report. Institute for Clinical and Economic Review; 2021.
   Google Scholar
• Tice JA, Mandrik O, Thokala P, et al. Voclosporin and belimumab for lupus nephritis: effectiveness and value; evidence report. Institute for Clinical and Economic Review; 2021.
   Google Scholar
• Carlson JJ, Brouwer ED, Kim E, et al. Alternative approaches to quality-adjusted life-year estimation within standard cost-effectiveness models: literature review, feasibility assessment, and impact evaluation. Value Health. 2020;23(12):1523–1533.
   PubMed Web of Science ®Google Scholar
• NICE DSU. Multiple criteria decision analysis for health technology assessment. Sheffield, UK: NICE DSU; 2011.
   Google Scholar
• Marsh KD, Sculpher M, Caro JJ, et al. The use of MCDA in HTA: great potential, but more effort needed. Value Health. 2018;21(4):394–397.
   PubMed Web of Science ®Google Scholar
• Lakdawalla DN, Phelps CE. Health technology assessment with diminishing returns to health: the generalized Risk-Adjusted Cost-Effectiveness (GRACE) approach. Value Health. 2021;24(2):244–249.
   PubMed Web of Science ®Google Scholar
• Democratic Party. 2020 Democratic party platform. 2020 [2021 Jun 11]. Available from: https://democrats.org/where-we-stand/party-platform/achievinguniversal-affordable-quality-health-care/
   Google Scholar
• The Oklahoman. 2020 [cited 2021 Jun 11]. Available from: https://eu.oklahoman.com/story/opinion/columns/guest/2020/05/30/point-of-view-which-states-will-follow-oklahoma-and-ban-discriminatory-health-care-rationing/60398390007/
   Google Scholar