Patient value: its nature, measurement, and role in real world evidence studies and outcomes-based reimbursement

References

• Porter ME. What is value in health care? N Engl J Med 2010;363:2477-81
   PubMed Web of Science ®Google Scholar
• Armstrong D, Caldwell D. Origins of the concept of quality of life in health care: a rhetorical solution to a political problem. Soc Theory Health 2004;2:361-71
   Google Scholar
• Juczyński Z. Health-related quality of life: theory and measurement. Acta Universitatis Lodziensis. Folia Psychologica 2006;10. Available at: http://hdl.handle.net/11089/4128
   Google Scholar
• Durkheim E. Suicide. Spaulding JA, Simpson G, trans. New York: The Free Press; 1897, 1951
   Google Scholar
• Parsons T. Definition of health and illness in the light of American values and social structure. In: Gartly GE, editor. Patients, physicians and illness: a sourcebook in behavioural science and health. New York: Free Press; 1958:165-187
   Google Scholar
• Revicki DA. Health-related quality of life in the evaluation of medical therapy for chronic illness. J Fam Pract 1989;29:377-80
   PubMed Web of Science ®Google Scholar
• World Health Organization. The International Classification of Impairments, Disabilities and Handicaps. Geneva: WHO; 1980
   Google Scholar
• World Health Organization. International Classification of Functioning and Disability: ICIDH-2. Stationery Office Books. Geneva: WHO; 1999
   Google Scholar
• Enright PL. The six-minute walk test. Respir Care 2003;48:783-5
   PubMedGoogle Scholar
• More T. Utopia. London: Chatto & Windus; 1516/1908
   Google Scholar
• McCelland DC. Personality. New York: William Sloane; 1951
   Google Scholar
• Maslow AH. Motivation and personality. New York: Harper & Row; 1954
   Google Scholar
• Burton JW. Conflicts: human needs theory. New York: St. Martin’s Press; 1990
   Google Scholar
• Doucey M. Understanding the root cause of conflicts: why it matters for international crisis management. Intl Affairs Rev 2011;20;1-11
   Google Scholar
• Jahoda, M. Work, employment, and unemployment. Values, theories, and approaches in social research. Am Psychol 1981;36:184-91
   Web of Science ®Google Scholar
• Fryer D. Employment deprivation and personal agency during unemployment: a critical discussion of Jahoda’s explanation of the psychological effects of unemployment. Soc Behav 1986;1:3-23
   Google Scholar
• Karsten IP, Batinic B. The need for work: Jahoda’s latent functions of employment in a representative sample of the German population. J Organ Behav 2010;31:45-64
   Web of Science ®Google Scholar
• Hassoun N. Human rights and the minimally good life. Res Philosophica 2013;90:413-38
   Web of Science ®Google Scholar
• Minshull J, Ross K, Turner J. The human needs model of nursing. J Adv Nurs 1986;11:643-9
   PubMed Web of Science ®Google Scholar
• Gröpel P, Kuhl J. Work-life balance and subjective well-being: the mediating role of need fulfilment. Br J Psychol 2009;100:365-75
   PubMed Web of Science ®Google Scholar
• Vlachopoulos SP, Neikou E. A prospective study of the relationships of autonomy, competence, and relatedness with exercise attendance, adherence, and dropout. J Sports Med Phys Fitness 2007;47:475-82
   PubMed Web of Science ®Google Scholar
• Mack DE, Wilson PM, Gunnell KE, et al. Health-enhancing physical activity: associations with markers of well-being. Appl Psychol Health Well Being 2012;4:127-50
   PubMed Web of Science ®Google Scholar
• Greaves C, Poltawski L, Garside R, et al. Understanding the challenge of weight loss maintenance: a systematic review and synthesis of qualitative research on weight loss maintenance. Health Psychol Rev 2017;11:145-63
   PubMed Web of Science ®Google Scholar
• Hunt SM, McKenna SP. The QLDS: a scale for the measurement of quality of life in depression. Health Policy 1992;22:307-19
   PubMed Web of Science ®Google Scholar
• Holmes SJ, McKenna SP, Doward LC, et al. Development of a questionnaire to assess the quality of life of adults with growth hormone deficiency. Endocrinology Metab 1995;2:63-9
   Google Scholar
• Doward LC, Spoorenberg A, Cook SA, et al. The development of the ASQoL: a quality of life instrument specific to ankylosing spondylitis. Ann Rheum Dis 2003;62:20-6
   PubMed Web of Science ®Google Scholar
• McKenna SP, Cook SA, Whalley D, et al. Development of the PSORIQoL, a psoriasis-specific measure of quality of life designed for use in clinical practice and trials. Br J Dermatol 2003;149:323-31
   PubMed Web of Science ®Google Scholar
• Ryan RM, Deci EL Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. Am Psychol 2000;55:68-78
   PubMed Web of Science ®Google Scholar
• Rasch G. Probabilistic models for some intelligence and attainment tests. Copenhagen: Danmarks Paedogogische Institut; 1960
   Google Scholar
• Grimby G, Tennant A, Tesio L. The use of raw scores from ordinal scales: time to end malpractice? J Rehabil Med 2012;44:97-8
   PubMed Web of Science ®Google Scholar
• Thomas ML. The value of item response theory in clinical assessment: a review. Assessment 2011;18:291-307
   PubMed Web of Science ®Google Scholar
• Smith EV Jr. Detecting and evaluating the impact of multidimensionality using item fit statistics and principal component analysis of residuals. J Appl Meas 2002;3:205-31
   PubMedGoogle Scholar
• Food and Drug Administration. Draft guidance for industry on patient-reported outcome measures: use in medical product development to support labeling claims. Federal Register 2006;71:5862-3
   Google Scholar
• Bond TG, Fox CM. Applying the Rasch model: fundamental measurement in the human sciences. J Educ Measure 2003;40:185-7
   Web of Science ®Google Scholar
• Twiss J, McKenna SP. Comparing the impact of psoriasis and atopic dermatitis on quality of life: co-calibration of the PSORIQoL and QoLIAD. Qual Life Res 2015;24:105-13
   PubMed Web of Science ®Google Scholar
• Rouse M, Twiss J, McKenna SP. Co-calibrating quality-of-life scores from three pulmonary disorders: implications for comparative-effectiveness research. J Med Econ 2016;19:596-603
   PubMed Web of Science ®Google Scholar
• EuroQol Group. EuroQol—a new facility for the measurement of health-related quality of life. Health Policy 1990;16:199-208
   PubMed Web of Science ®Google Scholar
• Cookson R. Willingness to pay methods in health care: a sceptical view. Health Econ 2003;12:891-4
   PubMed Web of Science ®Google Scholar
• Wagner AK, Gandek B, Aaronson NK, et al. Cross-cultural comparisons of the content of SF-36 translations across 10 countries: results from the IQOLA Project. International Quality of Life Assessment. J Clin Epidemiol 1998;51:925-32
   PubMed Web of Science ®Google Scholar
• Tseng H-M, Lu J-F R, Gandek B. Cultural issues in using the SF-36 Health Survey in Asia: results from Taiwan. Health Qual Life Outcomes 2003;1:72
   PubMedGoogle Scholar
• Willich SN, Rossnagel K, Roll S, et al. Rose hip herbal remedy in patients with rheumatoid arthritis – a randomised controlled trial. Phytomedicine 2010;17:87-93
   PubMed Web of Science ®Google Scholar
• Karatepe A, Günaydin R, Türkmen G, et al. Effects of home-based exercise program on the functional status and the quality of life in patients with rheumatoid arthritis: 1-year follow-up study. Rheumatol Int 2011;31:171-6
   PubMedGoogle Scholar
• Keohane N, Petrie K. Outcomes-based reimbursement of medicines. London: The Social Market Foundation; July 2017. ISBN 978-1-910683-26-2
   Google Scholar
• Schwartz D, Lellouch J. Explanatory and pragmatic attitudes in therapeutical trials. J Chronic Dis 1967;20:637-48
   PubMedGoogle Scholar
• Freemantle N, Blonde L, Bolinder B, et al. Real-world trials to answer real-world questions. Pharmacoeconomics 2005;23:747-54
   PubMed Web of Science ®Google Scholar
• Porter ME, Lee TH. The strategy that will fix health care. Harvard Business Review; October 2013
   Google Scholar
• Carlson JJ, Garrison LP Jr, Sullivan SD. Paying for outcomes: innovative coverage and reimbursement schemes for pharmaceuticals. J Manag Care Pharm 2009;15:683-7
   PubMed Web of Science ®Google Scholar
• Pickin M, Cooper C, Chater T, et al. The multiple sclerosis risk sharing scheme monitoring study—early results and lessons for the future. BMC Neurol 2009;9:1
   PubMed Web of Science ®Google Scholar
• Moran N. Is NICE’s approach to cost-effectiveness turning the UK into a biotech-free zone? Nat Biotechnol 2009;26:151-4
   Google Scholar
• Garrison LP Jr, Carlson JJ, Bajaj PS, et al. Private sector risk-sharing agreements in the United States: trends, barriers, and prospects. Am J Manag Care 2015;21:632-40
   PubMed Web of Science ®Google Scholar
• Collins A. Measuring what really matters: towards a coherent measurement system to support person-centred care. Health Foundation Thought Paper, April 2014. Availabe at: http://www.health.org.uk/sites/health/files/MeasuringWhatReallyMatters.pdf
   Google Scholar
• Devlin N, Parkin D. Does NICE have a cost-effectiveness threshold and what other factors influence its decisions? A binary choice analysis. Health Econ 2004;13:437-52
   PubMed Web of Science ®Google Scholar
• Pettitt DA, Raza S, Naughton B, et al. The limitations of QALY: a literature review. J Stem Cell Res Ther 2016;6:4
   Google Scholar
• Brazier J, Roberts J, Deverill M. The estimation of a preference-based measure of health from the SF-36. J Health Econ 2002;21:271-92
   PubMed Web of Science ®Google Scholar
• McKenna SP, Ratcliffe J, Meads DM, et al. Development and validation of a preference based measure derived from the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) for use in cost utility analyses. Health Qual Life Outcomes 2008;6:65
   PubMed Web of Science ®Google Scholar
• Meads DM, McKenna SP, Doughty N, et al. The responsiveness and validity of the CAMPHOR Utility Index. Eur Respir J 2008;32:1513-19
   PubMed Web of Science ®Google Scholar