Abstract
Cancer causes significant death and disability globally. However, costs of more personalized cancer care continue to climb, while access to basic cancer screening and treatment is not available to much of the world. This chapter provides an overview of the status of patient-reported outcomes (PROs) in cancer clinical care and research. PROs are valuable for health care and health economic decision-making at institutional, regional, national, and international levels. PRO data should be considered along with cost and survival data when approving new therapies. PRO data can also be helpful when assessing existing treatment options for patients, particularly for drugs with minor outcome and toxicity differences. Finally, PROs can be useful in reimbursement algorithms to ensure delivery of quality cancer care in value-based financing environments. The authors advocate for reframing the concept of health value, aligning PRO measures with societal values, and broadening the definition of society to extend beyond national boundaries.
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References
Alexander B, Gurian G, Tilghman-Bryant T, Al E (2014) The societal and economic impact of cancer health disparities. Washington DC
American Cancer Society (2016) Cancer Facts and Figures 2016. American Cancer Society, Atlanta
Ayanian JZ, Zaslavsky AM, Arora NK, Kahn KL, Malin JL, Ganz PA, van Ryn M, Hornbrook MC, Kiefe CI, He Y, Urmie JM, Weeks JC, Harrington DP (2010) Patients’ experiences with care for lung cancer and colorectal cancer: findings from the cancer care outcomes research and surveillance consortium. J Clin Oncol 28(7):4154–4161. https://doi.org/10.1200/JCO.2009.27.3268
Balint E (1968) The possibilities of patient-centered medicine. Paper presented at the symposium conducted at the American Psychiatric Association, New Orleans, LA
Beach MC, Saha S, Cooper LA (2006) The role and relationship of cultural competence and patient-centeredness in health care quality. Commonwealth Fund 960:1–22
Bhadelia A, Atun R, Knaul FM (n.d.) Value of Cancer Care and Caring, Mimeo
Brogan AP, DeMuro C, Barrett AM, D’Alessio D, Bal V, Hogue SL (2017) Payer perspectives on patient-reported outcomes in health care decision-making: oncology examples. J Manag Care Spec Pharm 23(2):125–134
Brooks GA, Cronin AM, Uno H, Schrag D, Keating NL, Mack JW (2016) Intensity of medical interventions between diagnosis and death in patients with advanced lung and colorectal cancer: a cancors analysis. J Palliative Medicine 19(1):42–50
Brown JB, Stewart MA, Ryan BL (2001) Assessing communication between patients and physicians: the measure of patient-centered communication (MPCC). Working Paper Series, Paper # 95–2, 2nd edn. London, Ontario, Canada; Thames Valley Family Practice Research Unit and Centre for Studies in Family Medicine
Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K (1994) The edmonton symptom assessment system (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 7:6–9
Cancer Care Outcomes Research and Surveillance Consortium (CanCORS) (n.d.) The cancer care outcomes research and surveillance consortium: share thoughts on care. Retrieved from http://www.cancors.org/public/
Chen AB, Cronin A, Weeks JC, Chrischilles EA, Malin J, Hayman JA, Schrag D (2013) Palliative radiation therapy practice in patients with metastatic non-small-cell lung cancer: a cancer care outcomes research and surveillance consortium (CanCORS) study. J Clin Oncol 31(5):558–564
Chrischilles EA, McDowell BD, Rubenstein L, Charlton M, Pendergast J, Juarez GY, Arora NK (2015) Survivorship care planning and its influence on long-term patient-reported outcomes among colorectal and lung cancer survivors: the CanCORS disease-free survivor follow-up study. J Cancer Surviv Res Pract 9(2):269–278
Cleary PD, Edgman-Levitan S, Roberts M, Moloney TW, McMullen W, Walker JD, Delbanco TL (1991) Patients evaluate their hospital care: a national survey. Health Aff 10(4):254–267
Cleeland CS, Mendoza TR, Wang XS, Chou C, Harle M, Morrissey M, Engstrom MC (2000) Assessing symptom distress in cancer patients: the M. D Anderson symptom inventory. Cancer 89:1634–1646
Cleeland CS, Sloan JA (2010) Assessing the symptoms of cancer using patient-reported outcomes (ascpro): searching for standards. J Pain Symptom Manage 39(6):1077–1085
Coyle J, Williams B (2001) Valuing people as individuals: development of an instrument through a survey of person centredness in secondary care. J Adv Nurs 36:450–455
del Piccolo L, Mazzi MA, Scardoni S, Gobbi M, Zimmerman C (2008) A theory-based proposal to evaluate patient-centered communication in medical consultations: the verona patient-centered communication evaluation scale (VR-COPE). Health Educ 108(5):355–372
Donaldson MS (2004) Taking stock of health-related quality-of-life measurement in oncology practice in the United States. J Natl Cancer Inst Monogr 2004(33):155–167
Dworkin RH, Turk DC, Revicki DA, Harding G, Coyne KS, Peirce-Sandner S, Bhagwat D, Everton D, Burke LB, Cowan P, Farrar JT, Hertz S, Max MB, Rappaport BA, Melzack R (2009) Development and initial validation of an expanded and revised version of the short-form McGill pain questionnaire (SF-MPQ-2). Pain 144:35–42
Edvardsson D, Koch S, Nay R (2009) Psychometric evaluation of the English language person-centered climate questionnaire–patient version. West J Nurs Res 31:235–444
Efficace F, Rees J, Fayers P, Pusic A, Taphoorn M, Greimel E, Reijneveld J, Whale K, Blazeby J (2014) Overcoming barriers to the implementation of patient-reported outcomes in cancer clinical trials: the PROMOTION registry. Health Qual Life Outcomes 12:86. https://doi.org/10.1186/1477-7525-12-86
Epstein RM, Peters E (2009) Beyond information: exploring patients’ preferences. J Am Med Assoc 302(2):195–197
European Medicines Agency (2014) Reflection paper on the use of patient reported outcomes (PRO) measures in oncology studies
Gimema QOL Working Party (n.d.) PROMOTION registry. http://promotion.gimema.it/
Glasgow RE, Wagner EH, Schaefer J et al (2005) Development and validation of the patient assessment of chronic illness care (PACIC). Med Care 43(5):436
Gnanasakthy A, DeMuro C (2015) Overcoming organizational challenges of integrating patient-reported outcomes in oncology clinical trials. Ther Innov Regul Sci 49(6):822–830
Gnanasakthy A, DeMuro C, Clark M, Haydysch E, Ma E, Bonthapally V (2016) Patient-reported outcomes labeling for products approved by the office of hematology and oncology products of the us food and drug administration (2010–2014). J Clin Oncol 34(15):1928–1934
Goeree R, Diaby V (2013) Introduction to health economics and decision-making: is economics relevant for the frontline clinician? Best Pract Res Clin Gastroenterol 27:831–844
Goldstein DA, Clark J, Tu Y, Zhang J, Fang F, Goldstein RM, Stemmer SM, Rosenbaum E (2016) Global differences in cancer drug prices: a comparative analysis. J Clin Oncol Suppl Abstr LBA6500
Gondek K, Sagnier P, Gilchirst K, Woolley JM (2007) Current status of patient reported outcomes in industry sponsored oncology clinical trials and product labels. J Clin Oncology 25(32):5087–5093
Hamidou Z, Dabakuyo TS, Bonnetain F (2011) Impact of response shift on longitudinal quality of life assessment in cancer clinical trials. Expert Rev Phamacoecon Outcomes Res 11(5):549–559. https://doi.org/10.1586/erp.11.57
Henbest RJ, Stewart MA (1989) Patient-centredness in the consultation a method for measurement. Fam Pract 6:249–253
Holzner B, Kemmler G, Sperner-Unterweger B, Kopp M, Dunser M, Margreiter R, Marschitz I, Nachbaur D, Fleischhacker WW, Griel R (2001) Quality of life measurement in oncology—a matter of the assessment instrument? Eur J Cancer 37:2349–2356
IMMPACT. Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (n.d.) Retrieved from www.immpact.org/index.html
IMS Institute for Healthcare Informatics (2016) Global oncology trend report: a review of 2015 and outlook to 2020. IMS Institute for Healthcare Informatics, Parsippany
Institute of Medicine (2001) Crossing the quality chasm. National Academies Press, Washington, DC
Institute of Medicine (2013) Delivering high-quality cancer care: charting a new course for a system in crisis. National Academies Press, Washington
Institute of Medicine, Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care (2003) Smedley BD, Stith AY NA (eds), Unequal treatment: confronting racial and ethnic disparities in health care. National A. National Academies Press, Washington, DC. https://doi.org/10.17226/12875
Kenzik KM, Ganz PA, Martin MY, Petersen L, Hays RD, Arora N, Pisu M (2015) How much do cancer-related symptoms contribute to health-related quality of life in lung and colorectal cancer patients? a report from the cancer care outcomes research and surveillance (CanCORS) consortium. Cancer 121(16):2831–2839 PMID: 25891437
Kluetz PG, Slagle A, Papadopoulos EJ, Johnson LL, Donoghue M, Kwitkowski VE, Chen W, Sridhara R, Farrell AT, Keegan P, Kim G, Pazdur R (2016) Focusing on core patient-reported outcomes in cancer clinical trials: symptomatic adverse events, physical function, and disease-related symptoms. Clin Cancer Res 22(7):1553–1558. https://doi.org/10.1158/1078-0432.CCR-15-2035
Laschinger HS, Hall LM, Pedersen CP, Almost J (2005) A psychometric analysis of the patient satisfaction with nursing care quality questionnaire. J Nurs Care Qual 20:220–230
Lipscomb J, Gotay CC, Snyder CF (2007) Patient-reported outcomes in cancer: a review of recent research and policy initiatives. CA A Cancer J Clin 57(5):278
Litzelman Kristin, Kent Erin E, Rowland Julia H (2016) Social factors in informal cancer caregivers: The interrelationships among social stressors, relationship quality, and family functioning in the CanCORS data sete. Cancer 122(2):278–286
Loftus P, Winslow R (2015, Oct 1) FDA approves Bristol-Myers’s Yervoy, Opdivo for treatment of melanoma. Wall Street J
MAPI Research Trust (n.d.) Patient reported outcome and quality of life instrument database. Retrieved from http://www.proqolid.org/
Mariotto AB, Robin Yabroff K, Shao Y, Feuer EJ, Brown ML (2011) Projections of the cost of cancer care in the United States: 2010–2020. JNCI J Natl Cancer Inst 103:117–128. https://doi.org/10.1093/jnci/djq495
Morgan S, Yoder LH (2012) A concept analysis of person-centered care. J Holist Nurs 30(1):6–15
National Institutes of Health (n.d.) Grid enabled measures database. https://www.gem-beta.org/Public/MeasureList.aspx?cat=2&viewall=false&scont=10
National Institutes of Health (n.d.) Patient-reported outcomes measurement information system: dynamic tools to measure health outcomes from the patient perspective. Retrieved from www.nihPROMIS.org
Patient Advocate Foundation (n.d.) Consumer-based cancer care value index. Retrieved from https://www.patientvalueindex.org/admin.php?register=center
Pratt-Chapman M, Hoffler E, Dor A, Sotomayor E (2015) ASCO’s value framework: is it all about the drugs? Value-Based Cancer Care 6:9
Ramsay J, Campbell JL, Schroter S, Green J, Roland M (2000) The general practice assessment survey (GPAS): tests of data quality and measurement properties. Fam Pract 17:372–379
Rock EP, Scott JA, Kennedy DL, Sridhara R, Pazdur R, Burke LB (2007) Challenges to use of health-related quality of life for food and drug administration approval of anticancer products. J Natl Cancer Inst Monogr 37:27–30
Safran DG, Kosinski M, Tarlov AR, Rogers WH, Taira DH, Lieberman N, Ware JE (1998) The primary care assessment survey: tests of data quality and measurement performance. Med Care 36:728–739
Schnipper LE, Davidson NE, Wollins DS, Tyne S, Blayney DW, Blum D et al (2015) American society of clinical oncology statement: a conceptual framework to assess the value of cancer treatment options. J Clin Oncol 33(23):2563–2577
Sheikh K, Ranson MK, Gilson L (2014) Explorations on people centredness in health systems. Health Policy Plann 29(suppl_2)
Sloan JA, Berk L, Roscoe J, Fisch MJ, Shaw EG, Wyatt G, Morrow GR, Dueck AC (2007) Integrating Patient-Reported Oucomes into cancer symptom management clinical trials supported by the national cancer institute-sponsored clinical trials networks. J Clin Oncol 25(32):5070–5077
Stewart M, Brown JB, Weston WW, McWilliam CL, Freeman TR (1995) Patient-centered medicine: transforming the clinical method. Sage, Thousand Oaks, CA
Suhonen R, Leino-Kilpi H, Välimäki M (2005) Development and psychometric properties of the individualized care scale. J Eval Clin Pract 11:7–20
Sullivan DR, Forsberg CW, Ganzini L, Au DH, Gould MK, Provenzale D, Lyons KS, Slatore CG (2016) Depression symptom trends and health domains among lung cancer patients in the CanCORS study. Lung Cancer 100:102–109. https://doi.org/10.1016/j.lungcan.2016.08.008
Unsworth CA (2001) Selection for rehabilitation: acute discharge patterns for stroke and orthopedic patients. Int J Rehabil Res 24:103–114
U.S. Department of Health and Human Services (2009) Guidance for industry patient-reported outcome measures: use in medical product development to support labeling claims. Food and Drug Administration
Vodicka E, Kim K, Devine EB, Gnanasakthy A, Scoggins JF, Patrick DL (2015) Inclusion of patient-reported outcome measures in registered clinical trials: evidence from ClinicalTrials.com
Ware JE, Bayliss MS, Mannocchia M, Davis GL (1999) Health-related quality of life in chronic hepatitis C: impact of disease and treatment response. Intervent Ther Group Hepatol 30:550–555
Ware JE (n.d.) SF-36® Health survey update. Retrieved from http://www.sf-36.org/tools/sf36.shtml#LIT
World Health Organization (2015) Cancer control: a global snapshot in 2015: summary of results from the 2015 WHO NCD country capacity survey
Zagadailov E, Fine M, Shields A (2013) Patient-reported outcomes are changing the landscape in oncology care: challenges and opportunities for payers. Am Health Drug Benefits 6(5):264–274
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Pratt-Chapman, M., Bhadelia, A. (2019). Patient-Reported Outcomes in Health Economic Decision-Making: A Changing Landscape in Oncology. In: Walter, E. (eds) Regulatory and Economic Aspects in Oncology. Recent Results in Cancer Research, vol 213. Springer, Cham. https://doi.org/10.1007/978-3-030-01207-6_6
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