Skip to main content
SpringerLink
Log in

Quality of Life

  • Chapter
  • First Online:
Psychological Aspects of Cancer

  • 1078 Accesses

Abstract

Research in quality of life among patients with cancer and survivors has steadily grown over the past four decades. Driven by patient-report and multidimensional in nature, health-related quality of life (HRQOL) has emerged as an important outcome in cancer clinical trials and may inform and enhance care delivery. The purpose of this chapter is to provide an overview of the various types and dimensions of HRQOL measurement and considerations for selecting appropriate patient-reported outcomes (PROs). In addition, guidelines for including PROs in cancer clinical trials and care delivery research are described along with evidence-based recommendations. Future work can benefit from sophisticated measurement approaches that maximize the precision, flexibility, and brevity of HRQOL measurement while providing meaningful information to patients and providers in order to inform treatment-related decisions and optimize patient-centered care.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 99.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 129.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 179.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. American Cancer Society. Cancer facts & figures 2020. Atlanta: American Cancer Society; 2020.

    Google Scholar 

  2. Zafar S, Alexander S, Weinfurt K, Schulman K, Abernethy A. Decision making and quality of life in the treatment of cancer: a review. Support Care Cancer. 2009;17:117–27.

    Article  PubMed  Google Scholar 

  3. U.S. Department of Health and Human Services Food and Drug Administration, Center for Drug Evaluation and Research, Center for Biologics Evaluation and Research, Center for Devices and Radiological Health. Guidance for industry patient-reported outcome measures: use in medical product development to support labeling claims. Available from https://www.fda.gov/regulatory-information/search-fda-guidance-documents/patient-reported-outcome-measures-use-medical-product-development-support-labeling-claims

  4. WHOQOL. Study protocol for the World Health Organization project to develop a quality of life assessment instrument (WHOQOL). Qual Life Res. 1993;2:153–9.

    Article  Google Scholar 

  5. Morton RP, Izzard ME. Quality-of-life outcomes in head and neck cancer patients. World J Surg. 2003;27:884–9.

    Article  PubMed  Google Scholar 

  6. Cella DF. Quality of life: concepts and definition. J Pain Symptom Manag. 1994;9:186–92.

    Article  CAS  Google Scholar 

  7. Cella DF. Methods and problems in measuring quality of life. Support Care Cancer. 1995;3:11–22.

    Article  CAS  PubMed  Google Scholar 

  8. Kornblith AB, Holland JC, Memorial Sloan-Kettering Cancer Center. Handbook of measures for psychological, social and physical function in cancer, vol. 1. New York: Memorial Sloan-Kettering Cancer Center; 1994.

    Google Scholar 

  9. Cella D. Quality of life. In: Breitbart W, Holland JC, Jacobsen PB, et al., editors. Psycho-oncology. New York, Oxford: Oxford University Press; 1998. p. 1135–46.

    Google Scholar 

  10. Trask PC, Hsu MA, McQuellon R. Other paradigms: health-related quality of life as a measure in cancer treatment: its importance and relevance. Cancer J. 2009;15:435–40.

    Article  PubMed  Google Scholar 

  11. Moriarty DG, Zack MM, Kobau R. The Centers for Disease Control and Prevention’s Healthy Days Measures – population tracking of perceived physical and mental health over time. Health Qual Life Outcomes. 2003;1:37.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Yin S, Njai R, Barker L, Siegel PZ, Liao Y. Summarizing health-related quality of life (HRQOL): development and testing of a one-factor model. Popul Health Metrics. 2016;14:22.

    Article  Google Scholar 

  13. Silveira AP, Gonçalves J, Sequeira T, et al. Patient reported outcomes in head and neck cancer: selecting instruments for quality of life integration in clinical protocols. Head Neck Oncol. 2010;2:1–9.

    Article  Google Scholar 

  14. Siembida EJ, Reeve BB, Zebrack BJ, Snyder MA, Salsman JM. Measuring health-related quality of life in adolescent and young adult cancer survivors with the National Institutes of Health Patient-Reported Outcomes Measurement Information System(®): Comparing adolescent, emerging adult, and young adult survivor perspectives. Psycho-Oncology. 2020;30(3):303–11.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Aaronson NK. Quality of life: what is it? How should it be measured? Oncology. 1988;2:69–76.

    CAS  PubMed  Google Scholar 

  16. Bergman B, Sullivan M, Sörenson S. Quality of life during chemotherapy for small cell lung cancer. II. A longitudinal study of the EORTC Core Quality of Life Questionnaire and comparison with the Sickness Impact Profile. Acta Oncol. 1992;31:19–28.

    Article  CAS  PubMed  Google Scholar 

  17. Cella DF, Tulsky DS, Gray G, et al. The functional assessment of cancer therapy scale: development and validation of the general measure. J Clin Oncol. 1993;11:570–9.

    Article  CAS  PubMed  Google Scholar 

  18. Cella DF, Bonomi AE, Lloyd SR, Tulsky DS, Kaplan E, Bonomi P. Reliability and validity of the Functional Assessment of Cancer Therapy-Lung (FACT-L) quality of life instrument. Lung Cancer. 1995;12:199–220.

    Article  CAS  PubMed  Google Scholar 

  19. Boini S, Briancon S, Guillemin F, Galan P, Hercberg S. Impact of cancer occurrence on health-related quality of life: a longitudinal pre-post assessment. Health Qual Life Outcomes. 2004;2:4.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Andrykowski MA, Brady MJ, Hunt JW. Positive psychosocial adjustment in potential bone marrow transplant recipients: cancer as a psychosocial transition. Psycho-Oncology. 1993;2:276.

    Article  Google Scholar 

  21. Lee L, Chung C-W, Chang Y-Y, et al. Comparison of the quality of life between patients with non-small-cell lung cancer and healthy controls. Qual Life Res. 2011;20:415–23.

    Article  PubMed  Google Scholar 

  22. HealthMeasures. HealthMeasures: transforming how health is measured. Available from http://www.healthmeasures.net/index.php. Accessed 18 Jan 2017.

  23. Pilkonis PA, Choi SW, Reise SP, Stover AM, Riley WT, Cella D. Item banks for measuring emotional distress from the Patient-Reported Outcomes Measurement Information System (PROMIS):depression, anxiety, and anger. Assessment. 2011;18:263–83.

    Article  PubMed  PubMed Central  Google Scholar 

  24. Garcia SF, Wagner LI, Choi S, George J, Cella D. PROMIS-compatible perceived cognitive function item banks for people with cancer. Second Patient Reported Outcomes Measurement Information Systems (PROMIS) Conference. Bethesda, MD, 2008.

    Google Scholar 

  25. Hahn EA, Devellis RF, Bode RK, et al. Measuring social health in the patient-reported outcomes measurement information system (PROMIS): item bank development and testing. Qual Life Res. 2010;19:1035–44.

    Article  PubMed  PubMed Central  Google Scholar 

  26. Yu L, Buysse DJ, Germain A, et al. Development of short forms from the PROMIS sleep disturbance and sleep-related impairment item banks. Behav Sleep Med. 2011;10:6–24.

    Article  PubMed  PubMed Central  Google Scholar 

  27. Lai JS, Cella D, Choi S, Teresi JA, Hays RD, Stone AA. Developing a fatigue item bank for the Patient-Reported Outcomes Measurement Information System (PROMIS FIB version 1). Presented at the Meeting of the Survey Methods in Multicultural, Multinational, and Multiregional Contexts (3MC), Berlin, Germany, 2008.

    Google Scholar 

  28. Amtmann D, Cook KF, Jensen MP, et al. Development of a PROMIS item bank to measure pain interference. Pain. 2010;150:173–82.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Revicki DA, Cook KF, Amtmann D, Harnam N, Chen WH, Keefe FJ. Exploratory and confirmatory factor analysis of the PROMIS pain quality item bank. Qual Life Res. 2013;23(1):245–55.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Rose M, Bjorner JB, Gandek B, Bruce B, Fries JF, Ware JE Jr. The PROMIS Physical Function item bank was calibrated to a standardized metric and shown to improve measurement efficiency. J Clin Epidemiol. 2014;67:516–26.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Weinfurt KP, Lin L, Bruner DW, et al. Development and initial validation of the PROMIS((R)) sexual function and satisfaction measures version 2.0. J Sex Med. 2015;12:1961–74.

    Article  PubMed  Google Scholar 

  32. Hinds PS, Nuss SL, Ruccione KS, et al. PROMIS pediatric measures in pediatric oncology: valid and clinically feasible indicators of patient-reported outcomes. Pediatr Blood Cancer. 2013;60:402–8.

    Article  PubMed  Google Scholar 

  33. Garcia SF, Cella D, Clauser SB, et al. Standardizing patient-reported outcomes assessment in cancer clinical trials: a patient-reported outcomes measurement information system initiative. J Clin Oncol. 2007;25:5106–12.

    Article  PubMed  Google Scholar 

  34. Flynn KE, Lin L, Cyranowski JM, et al. Development of the NIH PROMIS sexual function and satisfaction measures in patients with cancer. J Sex Med. 2013;10(Suppl 1):43–52.

    Article  PubMed  PubMed Central  Google Scholar 

  35. Reeve BB, McFatrich M, Mack JW, et al. Expanding construct validity of established and new PROMIS Pediatric measures for children and adolescents receiving cancer treatment. Pediatr Blood Cancer. 2020;67:e28160.

    Article  PubMed  PubMed Central  Google Scholar 

  36. Hinds PS, Wang J, Cheng YI, et al. PROMIS pediatric measures validated in a longitudinal study design in pediatric oncology. Pediatr Blood Cancer. 2019;66:e27606.

    Article  PubMed  Google Scholar 

  37. Reeve BB, Edwards LJ, Jaeger BC, et al. Assessing responsiveness over time of the PROMIS((R)) pediatric symptom and function measures in cancer, nephrotic syndrome, and sickle cell disease. Qual Life Res. 2018;27:249–57.

    Article  PubMed  Google Scholar 

  38. Jensen RE, Potosky AL, Reeve BB, et al. Validation of the PROMIS physical function measures in a diverse US population-based cohort of cancer patients. Qual Life Res. 2015;24:2333–44.

    Article  PubMed  PubMed Central  Google Scholar 

  39. Jensen RE, King-Kallimanis BL, Sexton E, et al. Measurement properties of PROMIS Sleep Disturbance short forms in a large, ethnically diverse cancer cohort. Psychol Test Assess Model. 2016;58:353–70.

    Google Scholar 

  40. Reeve BB, Hays RD, Bjorner JB, et al. Psychometric evaluation and calibration of health-related quality of life item banks: plans for the patient-reported outcomes measurement information system (PROMIS). Med Care. 2007;45:S22–31.

    Article  PubMed  Google Scholar 

  41. DeWalt DA, Rothrock N, Yount S, Stone AA, PROMIS Cooperative Group. Evaluation of item candidates: the PROMIS qualitative item review. Med Care. 2007;45:S12–21.

    Article  PubMed  PubMed Central  Google Scholar 

  42. Cella D, Yount S, Rothrock N, et al. The Patient-Reported Outcomes Measurement Information System (PROMIS): Progress of an NIH roadmap cooperative group during its first two years. Med Care. 2007;45:S3–S11.

    Article  PubMed  PubMed Central  Google Scholar 

  43. PROMIS Health Organization and PROMIS Cooperative Group. PROMIS® Instrument development and validation: scientific standards version 2.0 2013. Available from http://www.nihpromis.org/Documents/PROMISStandards_Vers2.0_Final.pdf

  44. Lasch KE, Marquis P, Vigneux M, et al. PRO development: rigorous qualitative research as the crucial foundation. Qual Life Res. 2010;19:1087–96.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Anastasi A, Urbina S. Psychological testing. Prentice Hall: Upper Saddle River; 1997.

    Google Scholar 

  46. Lord FM. Applications of item response theory to practical testing problems. Hillsdale: Lawrence Erlbaum; 1980.

    Google Scholar 

  47. Richardson M. The relation between the difficulty and the differential validity of a test. Psychometrika. 1936;1:33–49.

    Article  Google Scholar 

  48. Streiner DL, Norman GR. Health measurement scales : a practical guide to their development and use. Oxford. New York: Oxford University Press; 1995.

    Google Scholar 

  49. Cella D, Riley W, Stone A, et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. J Clin Epidemiol. 2010;63:1179–94.

    Article  PubMed  PubMed Central  Google Scholar 

  50. HealthMeasures. PROMIS reference populations. Available from https://www.healthmeasures.net/score-and-interpret/interpret-scores/promis/reference-populations

  51. Rothrock N, Hays R, Spritzer K, Yount SE, Riley W, Cella D. Relative to the general US population, chronic diseases are associated with poorer health-related quality of life as measured by the Patient-Reported Outcomes Measurement Information System (PROMIS). J Clin Epidemiol. 2010;63:1195–204.

    Article  PubMed  PubMed Central  Google Scholar 

  52. Cook KF, Cella D, Reeve BB. PRO-bookmarking to estimate clinical thresholds for patient-reported symptoms and function. Med Care. 2019;57(Suppl 5 Suppl 1):S13–7.

    Article  PubMed  Google Scholar 

  53. Cella D, Choi S, Garcia S, et al. Setting standards for severity of common symptoms in oncology using the PROMIS item banks and expert judgment. Qual Life Res. 2014;23:2651–61.

    Article  PubMed  PubMed Central  Google Scholar 

  54. Rothrock NE, Cook KF, O’Connor M, Cella D, Smith AW, Yount SE. Establishing clinically-relevant terms and severity thresholds for Patient-Reported Outcomes Measurement Information System(®) (PROMIS(®)) measures of physical function, cognitive function, and sleep disturbance in people with cancer using standard setting. Qual Life Res. 2019;28:3355–62.

    Article  PubMed  PubMed Central  Google Scholar 

  55. Basch E, Reeve BB, Mitchell SA, et al. Development of the National Cancer Institute’s Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). J Natl Cancer Inst. 2014;106(9):dju244.

    Article  PubMed  PubMed Central  Google Scholar 

  56. Chung AE, Shoenbill K, Mitchell SA, et al. Patient free text reporting of symptomatic adverse events in cancer clinical research using the National Cancer Institute’s Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). J Am Med Inform Assoc. 2019;26:276–85.

    Article  PubMed  PubMed Central  Google Scholar 

  57. Acquadro C, Berzon R, Dubois D, et al. Incorporating the patient’s perspective into drug development and communication: an ad hoc task force report of the Patient-Reported Outcomes (PRO) Harmonization Group meeting at the Food and Drug Administration, February 16, 2001. Value Health. 2003;6:522–31.

    Article  PubMed  Google Scholar 

  58. European Medicines Agency. Appendix 2 to the guideline on the evaluation of anticancer medicinal products in man. The use of patient-reported outcome (PRO) measures in oncology studies 2016.

    Google Scholar 

  59. Fromme EK, Eilers KM, Mori M, Hsieh YC, Beer TM. How accurate is clinician reporting of chemotherapy adverse effects? A comparison with patient-reported symptoms from the quality-of-life questionnaire C30. J Clin Oncol. 2004;22:3485–90.

    Article  PubMed  Google Scholar 

  60. Maio MD, Gallo C, Leighl NB, et al. Symptomatic toxicities experienced during anticancer treatment: agreement between patient and physician reporting in three randomized trials. J Clin Oncol. 2015;33:910–5.

    Article  PubMed  Google Scholar 

  61. Bennett AV, Dueck AC, Mitchell SA, et al. Mode equivalence and acceptability of tablet computer-, interactive voice response system-, and paper-based administration of the U.S. National Cancer Institute’s Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). Health Qual Life Outcomes. 2016;14:24.

    Article  PubMed  PubMed Central  Google Scholar 

  62. Dueck AC, Mendoza TR, Mitchell SA, et al. Validity and reliability of the US National Cancer Institute’s Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). JAMA Oncol. 2015;1:1051–9.

    Article  PubMed  PubMed Central  Google Scholar 

  63. Reeve BB, McFatrich M, Mack JW, et al. Validity and reliability of the pediatric patient-reported outcomes version of the common terminology criteria for adverse events. J Natl Cancer Inst. 2020;112:1143–52.

    Article  PubMed  PubMed Central  Google Scholar 

  64. Reeve BB, McFatrich M, Pinheiro LC, et al. Eliciting the child’s voice in adverse event reporting in oncology trials: cognitive interview findings from the pediatric patient-reported outcomes version of the common terminology criteria for adverse events initiative. Pediatric Blood Cancer. 2017;64(3) https://doi.org/10.1002/pbc.26261.

  65. Quinten C, Coens C, Mauer M, et al. Baseline quality of life as a prognostic indicator of survival: a meta-analysis of individual patient data from EORTC clinical trials. Lancet Oncol. 2009;10:865–71.

    Article  PubMed  Google Scholar 

  66. Ediebah DE, Quinten C, Coens C, et al. Quality of life as a prognostic indicator of survival: A pooled analysis of individual patient data from canadian cancer trials group clinical trials. Cancer. 2018;124:3409–16.

    Article  PubMed  Google Scholar 

  67. Gotay CC, Kawamoto CT, Bottomley A, Efficace F. The prognostic significance of patient-reported outcomes in cancer clinical trials. J Clin Oncol. 2008;26:1355–63.

    Article  PubMed  Google Scholar 

  68. Husson O, de Rooij BH, Kieffer J, et al. The EORTC QLQ-C30 summary score as prognostic factor for survival of patients with cancer in the “real-world”: results from the population-based PROFILES registry. Oncologist. 2020;25:e722–32.

    Article  PubMed  Google Scholar 

  69. Zikos E, Coens C, Quinten C, et al. The added value of analyzing pooled health-related quality of life data: a review of the EORTC PROBE initiative. J Natl Cancer Inst. 2015;108(5):djv391.

    Article  PubMed  Google Scholar 

  70. Shaw BE, Brazauskas R, Millard HR, et al. Centralized patient-reported outcome data collection in transplantation is feasible and clinically meaningful. Cancer. 2017;123:4687–700.

    Article  CAS  PubMed  Google Scholar 

  71. Fehnel S, DeMuro C, McLeod L, Coon C, Gnanasakthy A. US FDA patient-reported outcome guidance: great expectations and unintended consequences. Expert Rev Pharmacoecon Outcomes Res. 2013;13:441–6.

    Article  PubMed  Google Scholar 

  72. Brundage M, Bass B, Davidson J, et al. Patterns of reporting health-related quality of life outcomes in randomized clinical trials: implications for clinicians and quality of life researchers. Qual Life Res. 2011;20:653–64.

    Article  PubMed  Google Scholar 

  73. Calvert M, Kyte D, Mercieca-Bebber R, et al. Guidelines for inclusion of patient-reported outcomes in clinical trial protocols: the SPIRIT-PRO extension. JAMA. 2018;319:483–94.

    Article  PubMed  Google Scholar 

  74. Calvert M, Blazeby J, Altman DG, Revicki DA, Moher D, Brundage MD. Reporting of patient-reported outcomes in randomized trials: the CONSORT PRO extension. JAMA. 2013;309:814–22.

    Article  CAS  PubMed  Google Scholar 

  75. Kluetz PG, Chingos DT, Basch EM, Mitchell SA. Patient-Reported Outcomes in Cancer Clinical Trials: Measuring Symptomatic Adverse Events With the National Cancer Institute’s Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). Am Soc Clin Oncol Educ Book. 2016;35:67–73.

    Article  PubMed  Google Scholar 

  76. US Food & Drug Administration. Value and use of patient-reported outcomes (PROs) in assessing effects of medical devices. CDRH strategic priorities 2016–2017 2019.

    Google Scholar 

  77. Gnanasakthy A, DeMuro C, Clark M, Haydysch E, Ma E, Bonthapally V. 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. 2016;34:1928–34.

    Article  CAS  PubMed  Google Scholar 

  78. Gnanasakthy A, Mordin M, Evans E, Doward L, DeMuro C. A review of patient-reported outcome labeling in the United States (2011–2015). Value Health. 2017;20:420–9.

    Article  PubMed  Google Scholar 

  79. Gnanasakthy A, Barrett A, Evans E, D’Alessio D, Romano CD. A Review of Patient-Reported Outcomes Labeling for Oncology Drugs Approved by the FDA and the EMA (2012–2016). Value Health. 2019;22:203–9.

    Article  PubMed  Google Scholar 

  80. Basch E, Geoghegan C, Coons SJ, et al. Patient-reported outcomes in cancer drug development and US regulatory review: perspectives from industry, the Food and Drug Administration, and the Patient. JAMA Oncol. 2015;1:375–9.

    Article  PubMed  Google Scholar 

  81. US Food & Drug Administration. Project Patient Voice 2020.

    Google Scholar 

  82. Schnadig ID, Fromme EK, Loprinzi CL, et al. Patient-physician disagreement regarding performance status is associated with worse survivorship in patients with advanced cancer. Cancer. 2008;113:2205–14.

    Article  PubMed  Google Scholar 

  83. Bennett AV, Jensen RE, Basch E. Electronic patient-reported outcome systems in oncology clinical practice. CA Cancer J Clin. 2012;62:336–47.

    Article  Google Scholar 

  84. Basch E, Deal AM, Kris MG, et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol. 2016;34:557–65.

    Article  CAS  PubMed  Google Scholar 

  85. Cheville AL, Moynihan T, Herrin J, Loprinzi C, Kroenke K. Effect of collaborative Telerehabilitation on functional impairment and pain among patients with advanced-stage cancer: a randomized clinical trial. JAMA Oncol. 2019;5:644–52.

    Article  PubMed  PubMed Central  Google Scholar 

  86. Frankland J, Brodie H, Cooke D, et al. Follow-up care after treatment for prostate cancer: evaluation of a supported self-management and remote surveillance programme. BMC Cancer. 2019;19:368.

    Article  PubMed  PubMed Central  Google Scholar 

  87. Detmar SB, Muller MJ, Schornagel JH, Wever LD, Aaronson NK. Role of health-related quality of life in palliative chemotherapy treatment decisions. J Clin Oncol. 2002;20:1056–62.

    Article  CAS  PubMed  Google Scholar 

  88. Aapro M, Bossi P, Dasari A, et al. Digital health for optimal supportive care in oncology: benefits, limits, and future perspectives. Support Care Cancer. 2020;28:4589–612.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  89. Denis F, Lethrosne C, Pourel N, et al. Randomized trial comparing a web-mediated follow-up with routine surveillance in lung cancer patients. J Natl Cancer Inst. 2017;109(9) https://doi.org/10.1093/jnci/djx029.

  90. Denis F, Yossi S, Septans AL, et al. Improving survival in patients treated for a lung cancer using self-evaluated symptoms reported through a web application. Am J Clin Oncol. 2017;40:464–9.

    Article  PubMed  Google Scholar 

  91. Jenner AV, Mukherjee S, Roberts R, Howe D, Mort D. Patient-reported outcome measures for chemotherapy-related acute toxicity–a single centre experience. Clin Oncol. 2010;22:321–2.

    Article  CAS  Google Scholar 

  92. Abernethy AP, Herndon JE, Wheeler JL, et al. Improving health care efficiency and quality using tablet personal computers to collect research-quality, patient-reported data. Health Serv Res. 2008;43:1975–91.

    Article  PubMed  PubMed Central  Google Scholar 

  93. Basch E, Iasonos A, Barz A, et al. Long-term toxicity monitoring via electronic patient-reported outcomes in patients receiving chemotherapy. J Clin Oncol. 2007;25:5374–80.

    Article  PubMed  Google Scholar 

  94. Ruland CM, Holte HH, Røislien J, et al. Effects of a computer-supported interactive tailored patient assessment tool on patient care, symptom distress, and patients’ need for symptom management support: a randomized clinical trial. J Am Med Inform Assoc. 2010;17:403–10.

    Article  PubMed  PubMed Central  Google Scholar 

  95. McLachlan SA, Allenby A, Matthews J, et al. Randomized trial of coordinated psychosocial interventions based on patient self-assessments versus standard care to improve the psychosocial functioning of patients with cancer. J Clin Oncol. 2001;19:4117–25.

    Article  CAS  PubMed  Google Scholar 

  96. Berry DL, Blumenstein BA, Halpenny B, et al. Enhancing patient-provider communication with the electronic self-report assessment for cancer: a randomized trial. J Clin Oncol. 2011;29:1029–35.

    Article  PubMed  PubMed Central  Google Scholar 

  97. Kearney N, Kidd L, Miller M, et al. Utilising handheld computers to monitor and support patients receiving chemotherapy: results of a UK-based feasibility study. Support Care Cancer. 2006;14:742–52.

    Article  CAS  PubMed  Google Scholar 

  98. Matthew AG, Currie KL, Irvine J, et al. Serial personal digital assistant data capture of health-related quality of life: a randomized controlled trial in a prostate cancer clinic. Health Qual Life Outcomes. 2007;5:38.

    Article  PubMed  PubMed Central  Google Scholar 

  99. Clark K, Bardwell WA, Arsenault T, DeTeresa R, Loscalzo M. Implementing touch-screen technology to enhance recognition of distress. Psycho-Oncology. 2009;18:822–30.

    Article  CAS  PubMed  Google Scholar 

  100. Halkett G, Jiwa M, Tanner P, Fournier C, Katris P. Trialling computer touch-screen technology to assess psychological distress in patients with gynaecological cancer. Australas Med J. 2010;3:781–5.

    Article  Google Scholar 

  101. Dinkel A, Berg P, Pirker C, et al. Routine psychosocial distress screening in radiotherapy: implementation and evaluation of a computerised procedure. Br J Cancer. 2010;103:1489–95.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  102. Marcano Belisario JS, Jamsek J, Huckvale K, O’Donoghue J, Morrison CP, Car J. Comparison of self-administered survey questionnaire responses collected using mobile apps versus other methods. Cochrane Database Syst Rev. 2015;2015(7):Mr000042.

    PubMed Central  Google Scholar 

  103. Fortner B, Okon T, Schwartzberg L, Tauer K, Houts AC. The cancer care monitor: psychometric content evaluation and pilot testing of a computer administered system for symptom screening and quality of life in adult cancer patients. J Pain Symptom Manag. 2003;26:1077–92.

    Article  Google Scholar 

  104. Ashley L, Jones H, Thomas J, et al. Integrating patient reported outcomes with clinical cancer registry data: a feasibility study of the electronic patient-reported outcomes from cancer survivors (ePOCS) system. J Med Internet Res. 2013;15:e230.

    Article  PubMed  PubMed Central  Google Scholar 

  105. Avery KNL, Richards HS, Portal A, et al. Developing a real-time electronic symptom monitoring system for patients after discharge following cancer-related surgery. BMC Cancer. 2019;19:463.

    Article  PubMed  PubMed Central  Google Scholar 

  106. Benze G, Nauck F, Alt-Epping B, et al. PROutine: a feasibility study assessing surveillance of electronic patient reported outcomes and adherence via smartphone app in advanced cancer. Ann Palliat Med. 2019;8:104–11.

    Article  PubMed  Google Scholar 

  107. Bush N, Donaldson G, Moinpour C, et al. Development, feasibility and compliance of a web-based system for very frequent QOL and symptom home self-assessment after hematopoietic stem cell transplantation. Qual Life Res. 2005;14:77–93.

    Article  CAS  PubMed  Google Scholar 

  108. Cleeland CS, Wang XS, Shi Q, et al. Automated symptom alerts reduce postoperative symptom severity after cancer surgery: a randomized controlled clinical trial. J Clin Oncol. 2011;29:994–1000.

    Article  PubMed  PubMed Central  Google Scholar 

  109. Kornblith AB, Dowell JM, Herndon JE II, et al. Telephone monitoring of distress in patients aged 65 years or older with advanced stage cancer. Cancer. 2006;107:2706–14.

    Article  PubMed  Google Scholar 

  110. Kuijpers W, Groen WG, Oldenburg HS, Wouters MW, Aaronson NK, van Harten WH. eHealth for breast cancer survivors: use, feasibility and impact of an interactive portal. JMIR Cancer. 2016;2:e3.

    Article  PubMed  PubMed Central  Google Scholar 

  111. Min YH, Lee JW, Shin Y-W, et al. Daily collection of self-reporting sleep disturbance data via a smartphone app in breast cancer patients receiving chemotherapy: a feasibility study. J Med Internet Res. 2014;16:e135.

    Article  PubMed  PubMed Central  Google Scholar 

  112. Richards HS, Blazeby JM, Portal A, et al. A real-time electronic symptom monitoring system for patients after discharge following surgery: a pilot study in cancer-related surgery. BMC Cancer. 2020;20:543.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  113. Tran C, Dicker A, Leiby B, Gressen E, Williams N, Jim H. Utilizing digital health to collect electronic patient-reported outcomes in prostate cancer: single-arm pilot trial. J Med Internet Res. 2020;22:e12689.

    Article  PubMed  PubMed Central  Google Scholar 

  114. Zini EM, Lanzola G, Quaglini S, Bossi P, Licitra L, Resteghini C. A pilot study of a smartphone-based monitoring intervention on head and neck cancer patients undergoing concurrent chemo-radiotherapy. Int J Med Inform. 2019;129:404–12.

    Article  PubMed  Google Scholar 

  115. Weaver A, Young AM, Rowntree J, et al. Application of mobile phone technology for managing chemotherapy-associated side-effects. Ann Oncol. 2007;18:1887–92.

    Article  CAS  PubMed  Google Scholar 

  116. Mooney KH, Beck SL, Friedman RH, Farzanfar R. Telephone-linked care for cancer symptom monitoring: a pilot study. Cancer Pract. 2002;10:147–54.

    Article  PubMed  Google Scholar 

  117. Warrington L, Absolom K, Holch P, Gibson A, Clayton B, Velikova G. Online tool for monitoring adverse events in patients with cancer during treatment (eRAPID): field testing in a clinical setting. BMJ Open. 2019;9:e025185.

    Article  PubMed  PubMed Central  Google Scholar 

  118. Wheelock AE, Bock MA, Martin EL, et al. SIS.NET: a randomized controlled trial evaluating a web-based system for symptom management after treatment of breast cancer. Cancer. 2015;121:893–9.

    Article  PubMed  Google Scholar 

  119. Graetz I, McKillop CN, Stepanski E, Vidal GA, Anderson JN, Schwartzberg LS. Use of a web-based app to improve breast cancer symptom management and adherence for aromatase inhibitors: a randomized controlled feasibility trial. J Cancer Surviv. 2018;12:431–40.

    Article  PubMed  PubMed Central  Google Scholar 

  120. Abernethy AP, Herndon Ii JE, Wheeler JL, et al. Feasibility and acceptability to patients of a longitudinal system for evaluating cancer-related symptoms and quality of life: pilot study of an e/tablet data-collection system in academic oncology. J Pain Symptom Manag. 2009;37:1027–38.

    Article  Google Scholar 

  121. Basch E, Artz D, Dulko D, et al. Patient online self-reporting of toxicity symptoms during chemotherapy. J Clin Oncol. 2005;23:3552–61.

    Article  PubMed  Google Scholar 

  122. Basch E, Stover AM, Schrag D, et al. Clinical utility and user perceptions of a digital system for electronic patient-reported symptom monitoring during routine cancer care: findings from the PRO-TECT trial. JCO Clin Cancer Inform. 2020;4:947–57.

    Article  PubMed  Google Scholar 

  123. Fromme EK, Kenworthy-Heinige T, Hribar M. Developing an easy-to-use tablet computer application for assessing patient-reported outcomes in patients with cancer. Support Care Cancer. 2011;19:815–22.

    Article  PubMed  Google Scholar 

  124. Moradian S, Krzyzanowska MK, Maguire R, et al. Usability evaluation of a mobile phone-based system for remote monitoring and management of chemotherapy-related side effects in cancer patients: mixed-methods study. JMIR Cancer. 2018;4:e10932.

    Article  PubMed  PubMed Central  Google Scholar 

  125. Hilarius DL, Kloeg PH, Gundy CM, Aaronson NK. Use of health-related quality-of-life assessments in daily clinical oncology nursing practice. Cancer. 2008;113:628–37.

    Article  PubMed  Google Scholar 

  126. Carlson LE, Groff SL, Maciejewski O, Bultz BD. Screening for distress in lung and breast cancer outpatients: a randomized controlled trial. J Clin Oncol. 2010;28:4884–91.

    Article  PubMed  Google Scholar 

  127. Given CW, Sikorskii A, Tamkus D, et al. Managing symptoms among patients with breast cancer during chemotherapy: results of a two-arm behavioral trial. J Clin Oncol. 2008;26:5855–62.

    Article  PubMed  PubMed Central  Google Scholar 

  128. Snyder CF, Aaronson NK, Choucair AK, et al. Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations. Qual Life Res. 2012;21:1305–14.

    Article  PubMed  Google Scholar 

  129. Girgis A, Durcinoska I, Arnold A, Delaney GP. Interpreting and acting on the PRO scores from the patient-reported outcomes for personalized treatment and care (PROMPT-care) eHealth system. Med Care. 2019;57(Suppl 5 Suppl 1):S85–91.

    Article  PubMed  Google Scholar 

  130. Ashley L, Jones H, Thomas J, et al. Integrating cancer survivors’ experiences into UK cancer registries: design and development of the ePOCS system (electronic patient-reported outcomes from cancer survivors). Br J Cancer. 2011;105:S74–81.

    Article  PubMed  PubMed Central  Google Scholar 

  131. Cooley ME, Abrahm JL, Berry DL, et al. Algorithm-based decision support for symptom self-management among adults with cancer: results of usability testing. BMC Med Inform Decis Mak. 2018;18:31.

    Article  PubMed  PubMed Central  Google Scholar 

  132. Jensen RE, Snyder CF, Basch E, Frank L, Wu AW. All together now: findings from a PCORI workshop to align patient-reported outcomes in the electronic health record. J Comp Eff Res. 2016;5:561–7.

    Article  PubMed  PubMed Central  Google Scholar 

  133. Gwaltney CJ, Shields AL, Shiffman S. Equivalence of electronic and paper-and-pencil administration of patient-reported outcome measures: a meta-analytic review. Value Health. 2008;11:322–33.

    Article  PubMed  Google Scholar 

  134. Haverman L, van Oers HA, van Muilekom MM, Grootenhuis MA. Options for the interpretation of and recommendations for acting on different PROMs in daily clinical practice using KLIK. Med Care. 2019;57(Suppl 5 Suppl 1):S52–8.

    Article  PubMed  Google Scholar 

  135. Lucas AR, Bass MB, Rothrock NE, et al. Development of an eHealth system to capture and analyze patient sensor and self-report data: mixed-methods assessment of potential applications to improve cancer care delivery. JMIR Med Inform. 2018;6:e46.

    Article  PubMed  PubMed Central  Google Scholar 

  136. Stover AM, Stricker CT, Hammelef K, et al. Using stakeholder engagement to overcome barriers to implementing patient-reported outcomes (PROs) in cancer care delivery: approaches from 3 prospective studies. Med Care. 2019;57:S92–9.

    Article  PubMed  Google Scholar 

  137. Browne JP, Cano SJ. A Rasch measurement theory approach to improve the interpretation of patient-reported outcomes. Med Care. 2019;57(Suppl 5 Suppl 1):S18–s23.

    Article  PubMed  Google Scholar 

  138. Jensen RE, Bjorner JB. Applying PRO reference values to communicate clinically relevant information at the point-of-care. Med Care. 2019;57(Suppl 5 Suppl 1):S24–s30.

    Article  PubMed  Google Scholar 

  139. King MT, Dueck AC, Revicki DA. Can methods developed for interpreting group-level patient-reported outcome data be applied to individual patient management? Med Care. 2019;57(Suppl 5 Suppl 1):S38–s45.

    Article  PubMed  PubMed Central  Google Scholar 

  140. Shi Q, Mendoza TR, Cleeland CS. Interpreting patient-reported outcome scores for clinical research and practice: definition, determination, and application of cutpoints. Med Care. 2019;57(Suppl 5 Suppl 1):S8–s12.

    Article  PubMed  Google Scholar 

  141. Blackford AL, Wu AW, Snyder C. Interpreting and acting on PRO results in clinical practice: lessons learned from the patientviewpoint system and beyond. Med Care. 2019;57(Suppl 5 Suppl 1):S46–s51.

    Article  PubMed  PubMed Central  Google Scholar 

  142. Absolom K, Gibson A, Velikova G. Engaging patients and clinicians in online reporting of adverse effects during chemotherapy for cancer: the eRAPID system (electronic patient self-reporting of adverse events: patient information and aDvice). Med Care. 2019;57(Suppl 5 Suppl 1):S59–s65.

    Article  PubMed  Google Scholar 

  143. Holch P, Warrington L, Bamforth LCA, et al. Development of an integrated electronic platform for patient self-report and management of adverse events during cancer treatment. Ann Oncol. 2017;28:2305–11.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  144. Mooney K, Whisenant MS, Beck SL. Symptom care at home: a comprehensive and pragmatic PRO system approach to improve cancer symptom care. Med Care. 2019;57(Suppl 5 Suppl 1):S66–s72.

    Article  PubMed  PubMed Central  Google Scholar 

  145. Garg S, Williams NL, Ip A, Dicker AP. Clinical integration of digital solutions in health care: an overview of the current landscape of digital technologies in cancer care. JCO Clin Cancer Inform. 2018;2:1–9.

    Article  PubMed  Google Scholar 

  146. Barbera L, Moody L. A decade in review: Cancer Care Ontario’s approach to symptom assessment and management. Med Care. 2019;57(Suppl 5 Suppl 1):S80–s84.

    Article  PubMed  Google Scholar 

  147. Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30:473–83.

    Article  PubMed  Google Scholar 

  148. Ware J Jr, Kosinski M, Keller SD. A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Med Care. 1996;34:220–33.

    Article  PubMed  Google Scholar 

  149. Ware JE, Snow KK, Kosinski M. SF-36 health survey: manual and interpretation guide. Lincoln: QualityMetric Incorporated; 2000.

    Google Scholar 

  150. Hunt S, McKenna S, McEwen J, Williams J, Papp E. The Nottingham health profile: subjective health status and medical consultations. Soc Sci Med. 1981;55:301–11.

    Google Scholar 

  151. Derogatis LR, Lopez MC. Psychosocial adjustment to illness scale: administration, scoring and procedures manual. Baltimore: Johns Hopkins University School of Medicine; 1983.

    Google Scholar 

  152. Bergner M, Bobbitt RA, Carter WB, Gilson BS. The sickness impact profile: development and final revision of a health status measure. Med Care. 1981;19:787–805.

    Article  CAS  PubMed  Google Scholar 

  153. Spitzer WO, Dobson AJ, Hall J, et al. Measuring the quality of life of cancer patients: a concise QL-index for use by physicians. J Chronic Dis. 1981;34:585–97.

    Article  CAS  PubMed  Google Scholar 

  154. Ganz PA, Schag CAC, Lee JJ, Sim MS. The CARES: a generic measure of health-related quality of life for patients with cancer. Qual Life Res. 1992;1:19–29.

    Article  CAS  PubMed  Google Scholar 

  155. Schag CAC, Ganz PA, Heinrich RL. Cancer Rehabilitation Evaluation System-Short Form (CARES-SF): a cancer specific rehabilitation and quality of life instrument. Cancer. 1991;68:1406–13.

    Article  CAS  PubMed  Google Scholar 

  156. Aaronson NK, Ahmedzai S, Bergman B, et al. The European Organization for Research and Treatment of cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85:365–76.

    Article  CAS  PubMed  Google Scholar 

  157. Schipper H, Clinch J, McMurray A, Levitt M. Measuring the quality of life of cancer patients: the functional living index-cancer: development and validation. J Clin Oncol. 1984;2:472–83.

    Article  CAS  PubMed  Google Scholar 

  158. Cohen SR, Mount BM, Strobel MG, Bui F. The McGill quality of life questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med. 1995;9:207–19.

    Article  CAS  PubMed  Google Scholar 

  159. Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K. Validity of the McGill quality of life questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med. 1997;11:3–20.

    Article  PubMed  Google Scholar 

  160. Ferrans CE, Powers MJ. Quality of life index: development and psychometric properties. Adv Nurs Sci. 1985;8:15–24.

    Article  CAS  Google Scholar 

  161. Baker F, Denniston M, Zabora JR, Marcellus D. Cancer problems in living and quality of life after bone marrow transplantation. J Clin Psychol Med Settings. 2003;10:27–34.

    Article  Google Scholar 

  162. Zebrack BJ, Ganz PA, Bernaards CA, Petersen L, Abraham L. Assessing the impact of cancer: development of a new instrument for long-term survivors. Psycho-Oncology. 2006;15:407–21.

    Article  PubMed  PubMed Central  Google Scholar 

  163. Crespi CM, Ganz PA, Petersen L, Castillo A, Caan B. Refinement and psychometric evaluation of the impact of cancer scale. J Natl Cancer Inst. 2008;100:1530–41.

    Article  PubMed  PubMed Central  Google Scholar 

  164. Wyatt GK, Friedman LL. Development and testing of a quality of life model for long-term female cancer survivors. Qual Life Res. 1996;5:387–94.

    Article  CAS  PubMed  Google Scholar 

  165. Wyatt G, Friedman LL. Long-term female cancer survivors: quality of life issues and clinical implications. Cancer Nurs. 1996;19:1–7.

    Article  CAS  PubMed  Google Scholar 

  166. Wyatt G, Kurtz ME, Friedman LL, Given B, Given CW. Preliminary testing of the Long-Term Quality of Life (LTQL) instrument for female cancer survivors. J Nurs Meas. 1996;4:153–70.

    Article  CAS  PubMed  Google Scholar 

  167. Avis NE, Smith KW, McGraw S, Smith RG, Petronis VM, Carver CS. Assessing quality of life in adult cancer survivors (QLACS). Qual Life Res. 2005;14:1007–23.

    Article  PubMed  Google Scholar 

  168. Ferrell BR, Dow KH, Grant M. Measurement of the quality of life in cancer survivors. Qual Life Res. 1995;4:523–31.

    Article  CAS  PubMed  Google Scholar 

  169. Ferrell BR, Dow KH, Leigh S, Ly J, Gulasekaram P. Quality of life in long-term cancer survivors. Oncol Nurs Forum. 1995;22:915–22.

    CAS  PubMed  Google Scholar 

  170. Osoba D, Aaronson NK, Muller M, et al. The development and psychometric validation of a brain cancer quality-of-life questionnaire for use in combination with general cancer-specific questionnaires. Qual Life Res. 1996;5:139–50.

    Article  CAS  PubMed  Google Scholar 

  171. Sprangers MA, Groenvold M, Arraras JI, et al. The European Organization for Research and Treatment of Cancer breast cancer-specific quality-of-life questionnaire module: first results from a three-country field study. J Clin Oncol. 1996;14:2756–68.

    Article  CAS  PubMed  Google Scholar 

  172. Greimel ER, Kuljanic Vlasic K, Waldenstrom AC, et al. The European Organization for Research and Treatment of Cancer (EORTC) Quality-of-Life questionnaire cervical cancer module: EORTC QLQ-CX24. Cancer. 2006;107:1812–22.

    Article  PubMed  Google Scholar 

  173. Sprangers MAG, te Velde A, Aaronson NK. The construction and testing of the EORTC colorectal cancer-specific quality of life questionnaire module (QLQ-CR38). Eur J Cancer. 1999;35:238–47.

    Article  CAS  PubMed  Google Scholar 

  174. Greimel E, Radisic VB, Daghofer F, et al. Psychometric validation of the European organisation for research and treatment of cancer quality of life questionnaire-endometrial cancer module (EORTC QLQ-EN24). Eur J Cancer. 2011;47:183–90.

    Article  PubMed  Google Scholar 

  175. Bjordal K, Hammerlid E, Ahlner-Elmqvist M, et al. Quality of life in head and neck cancer patients: validation of the European organization for research and treatment of cancer quality of life questionnaire-H&N35. J Clin Oncol. 1999;17:1008–19.

    Article  CAS  PubMed  Google Scholar 

  176. Bergman B, Aaronson NK, Ahmedzai S, Kaasa S, Sullivan M. The EORTC QLQ-LC13: a modular supplement to the EORTC Core Quality of Life Questionnaire (QLQ-C30) for use in lung cancer clinical trials. EORTC Study Group on Quality of Life. Eur J Cancer. 1994;30A:635–42.

    Article  CAS  PubMed  Google Scholar 

  177. Stead ML, Brown JM, Velikova G, et al. Development of an EORTC questionnaire module to be used in health-related quality-of-life assessment for patients with multiple myeloma. European Organization for Research and Treatment of Cancer Study Group on Quality of Life. Br J Haematol. 1999;104:605–11.

    Article  CAS  PubMed  Google Scholar 

  178. Lagergren P, Fayers P, Conroy T, et al. Clinical and psychometric validation of a questionnaire module, the EORTC QLQ-OG25, to assess health-related quality of life in patients with cancer of the oesophagus, the oesophago-gastric junction and the stomach. Eur J Cancer. 2007;43:2066–73.

    Article  PubMed  Google Scholar 

  179. Greimel E, Bottomley A, Cull A, et al. An international field study of the reliability and validity of a disease-specific questionnaire module (the QLQ-OV28) in assessing the quality of life of patients with ovarian cancer. Eur J Cancer. 2003;39:1402–8.

    Article  CAS  PubMed  Google Scholar 

  180. Fitzsimmons D, Johnson CD, George S, et al. Development of a disease specific quality of life (QoL) questionnaire module to supplement the EORTC core cancer QoL questionnaire, the QLQ-C30 in patients with pancreatic cancer. EORTC Study Group on Quality of Life. Eur J Cancer. 1999;35:939–41.

    Article  CAS  PubMed  Google Scholar 

  181. Fossa SD, Aaronson NK, Newling D, et al. Quality of life and treatment of hormone resistant metastatic prostatic cancer. The EORTC Genito-Urinary Group. Eur J Cancer. 1990;26:1133–6.

    Article  CAS  PubMed  Google Scholar 

  182. Brady MJ, Cella DF, Mo F, et al. Reliability and validity of the Functional Assessment of Cancer Therapy-Breast (FACT-B) Quality of Life Instrument. Behav Med. 1997;15:974–86.

    CAS  Google Scholar 

  183. Weitzner MA, Meyers CA, Gelke CK, Byrne KS, Cella DF, Levin VA. The Functional Assessment of Cancer Therapy (FACT) scale. Development of a brain subscale and revalidation of the general version (FACT-G) in patients with primary brain tumors. Cancer. 1995;75:1151–61.

    Article  CAS  PubMed  Google Scholar 

  184. Ward WL, Hahn EA, Mo F, Hernandez L, Tulsky DS, Cella D. Reliability and validity of the Functional Assessment of Cancer Therapy-Colorectal (FACT-C) quality of life instrument. Qual Life Res. 1999;8:181–95.

    Article  CAS  PubMed  Google Scholar 

  185. Darling G, Eton D, Sulman J, Casson A, Cella D. Validation of the functional assessment of cancer therapy esophageal cancer. Cancer. 2006;107:854–63.

    Article  PubMed  Google Scholar 

  186. List MA, D’Antonio LL, Cella DF, et al. The performance status scale for head and neck cancer patients and the functional assessment of cancer therapy-head and neck scale. A study of utility and validity. Cancer. 1996;77:2294–301.

    Article  CAS  PubMed  Google Scholar 

  187. Heffernan N, Cella D, Webster K, et al. Measuring health-related quality of life in patients with hepatobiliary cancers: the functional assessment of cancer therapy-hepatobiliary questionnaire. J Clin Oncol. 2002;20:2229–39.

    Article  PubMed  Google Scholar 

  188. Webster K, Chivington K, Shonk C, et al. Measuring quality of life (QOL) among patients with leukemia: the Functional Assessment of Cancer Therapy-Leukemia (FACT-L). Qual Life Res. 2002;11:678.

    Google Scholar 

  189. Pettengell R, Donatti C, Hoskin P, et al. The impact of follicular lymphoma on health-related quality of life. Ann Oncol. 2008;19:570–6.

    Article  CAS  PubMed  Google Scholar 

  190. Cormier JN, Ross M, Gershenwald J, et al. Prospective assessment of the reliability, validity, and sensitivity to change of the functional assessment of cancer therapy-melanoma questionnaire. Cancer. 2008;112:2249–57.

    Article  PubMed  Google Scholar 

  191. Tong MC, Lo PS, Wong KH, et al. Development and validation of the functional assessment of cancer therapy nasopharyngeal cancer subscale. Head Neck. 2009;31:738–47.

    Article  PubMed  Google Scholar 

  192. Basen-Engquist K, Bodurka-Bevers D, Fitzgerald MA, et al. Reliability and validity of the functional assessment of cancer therapy-ovarian. J Clin Oncol. 2001;19:1809–17.

    Article  CAS  PubMed  Google Scholar 

  193. Esper P, Mo F, Chodak G, Sinner M, Cella D, Pienta KJ. Measuring quality of life in men with prostate cancer using the functional assessment of cancer therapy-prostate instrument. Urology. 1997;50:920–8.

    Article  CAS  PubMed  Google Scholar 

  194. Janda M, Obermair A, Cella D, et al. The functional assessment of cancer-vulvar: reliability and validity. Gynecol Oncol. 2005;97:568–75.

    Article  PubMed  Google Scholar 

  195. Litwin MS, Hays R, Fink A, Ganz PA, Leake B, Brook RH. The UCLA prostate cancer index: development, reliability, and validity of health-related quality of life measure. Med Care. 1998;26:1002–12.

    Article  Google Scholar 

  196. Terrell JE, Nanavati KA, Esclamado RM, Bishop JK, Bradford CR, Wolf GT. Head and neck cancer-specific quality of life: instrument validation. Arch Otolaryngol Head Neck Surg. 1997;123:1125–32.

    Article  CAS  PubMed  Google Scholar 

  197. Hollen PJ, Gralla RJ, Kris MG, Potanovich LM. Quality of life assessment in individuals with lung cancer: testing the Lung Cancer Symptom Scale (LCSS). Eur J Cancer. 1993;29A(Suppl 1):S51–8.

    Article  PubMed  Google Scholar 

  198. Dow KH, Ferrell BR, Leigh S, Ly J, Gulasekaram P. An evaluation of the quality of life among long-term survivors of breast cancer. Breast Cancer Res Treat. 1996;39:261–73.

    Article  CAS  PubMed  Google Scholar 

  199. Davidson-Homewood J, Norman A, Küchler T, Cunningham D, Watson M. Development of a disease specific questionnaire to supplement a generic tool for QoL in colorectal cancer. Psycho-Oncology. 2003;12(7):675–85.

    Article  CAS  PubMed  Google Scholar 

  200. McCorkle R. The measurement of symptom distress. Semin Oncol Nurs. 1987;3:248–56.

    Article  CAS  PubMed  Google Scholar 

  201. McCorkle R, Young K. Development of a symptom distress scale. Cancer Nurs. 1978;1:373–8.

    Article  CAS  PubMed  Google Scholar 

  202. Cleeland CS, Mendoza TR, Wang XS, et al. Assessing symptom distress in cancer patients: the M.D. Anderson symptom inventory. Cancer. 2000;89:1634–46.

    Article  CAS  PubMed  Google Scholar 

  203. Chang VT, Hwang SS, Feuerman M. Validation of the edmonton symptom assessment scale. Cancer. 2000;88:2164–71.

    Article  CAS  PubMed  Google Scholar 

  204. Portenoy RK, Thaler HT, Kornblith AB, et al. The memorial symptom assessment scale: an instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer. 1994;30A:1326–36.

    Article  CAS  PubMed  Google Scholar 

  205. De Haes JC, van Knippenberg FC, Neijt JP. Measuring psychological and physical distress in cancer patients: structure and application of the Rotterdam Symptom Checklist. Br J Cancer. 1990;62:1034–8.

    Article  PubMed  PubMed Central  Google Scholar 

  206. Derogatis LR. SCL-90-R: administration, scoring, and procedures manual I for the revised version of the SCL-90. Baltimore: Johns Hopkins University Press; 1977.

    Google Scholar 

  207. Derogatis LR, Spencer MS. The brief symptom inventory (BSI): Administration, scoring, and procedures manual. Baltimore: Johns Hopkins University School of Medicine, Clinical Psychometrics Research Unit; 1982.

    Google Scholar 

  208. Zabora J, BrintzenhofeSzoc K, Jacobsen P, et al. A new psychosocial screening instrument for use with cancer patients. Psychosomatics. 2001;42:241–6.

    Article  CAS  PubMed  Google Scholar 

  209. Mendoza TR, Wang XS, Cleeland CS, et al. The rapid assessment of fatigue severity in cancer patients: use of the brief fatigue inventory. Cancer. 1999;85:1186–96.

    Article  CAS  PubMed  Google Scholar 

  210. Cleeland CS, Ryan KM. Pain assessment: global use of the brief pain inventory. Ann Acad Med. 1994;23:129–38.

    CAS  Google Scholar 

  211. Lai J-S, Jensen SE, Beaumont JL, et al. Development of a symptom index for patients with primary brain tumors. Value Health. 2014;17:62–9.

    Article  PubMed  Google Scholar 

  212. Garcia SF, Rosenbloom SK, Beaumont JL, et al. Priority symptoms in advanced breast cancer: development and initial validation of the National Comprehensive Cancer Network-Functional Assessment of Cancer Therapy-Breast Cancer Symptom Index (NFBSI-16). Value Health. 2012;15:183–90.

    Article  PubMed  Google Scholar 

  213. Rao D, Butt Z, Rosenbloom S, et al. A comparison of the renal cell carcinoma symptom index (RCC-SI) and the functional assessment of cancer therapy – kidney symptom index (FKSI). J Pain Symptom Manag. 2009;38:291–8.

    Article  Google Scholar 

  214. Yount S, Beaumont J, Rosenbloom S, et al. A brief symptom index for advanced lung cancer. Clin Lung Cancer. 2011;13(1):14–23.

    Article  PubMed  PubMed Central  Google Scholar 

  215. Jensen SE, Rosenbloom SK, Beaumont JL, et al. A new index of priority symptoms in advanced ovarian cancer. Gynecol Oncol. 2011;120:214–9.

    Article  PubMed  Google Scholar 

  216. Victorson DE, Beaumont JL, Rosenbloom SK, Shevrin D, Cella D. Efficient assessment of the most important symptoms in advanced prostate cancer: the NCCN/FACT-P Symptom Index. Psycho-Oncology. 2010;20:977–83.

    Article  PubMed  Google Scholar 

  217. Hlubocky FJ, Webster K, Beaumont J, et al. A preliminary study of a health related quality of life assessment of priority symptoms in advanced lymphoma: the National Comprehensive Cancer Network-Functional Assessment of Cancer Therapy – Lymphoma Symptom Index. Leuk Lymphoma. 2013;54:1942–6.

    Article  PubMed  PubMed Central  Google Scholar 

  218. Armstrong FD, Toledano SR, Miloslavich K, et al. The Miami pediatric quality of life questionnaire: parent scale. Int J Cancer Suppl. 1999;12:11–7.

    Article  CAS  PubMed  Google Scholar 

  219. Bhatia S, Jenney ME, Bogue MK, et al. The Minneapolis-Manchester quality of life instrument: reliability and validity of the adolescent form. J Clin Oncol. 2002;20:4692–8.

    Article  PubMed  Google Scholar 

  220. Bhatia S, Jenney ME, Wu E, et al. The Minneapolis-Manchester quality of life instrument: reliability and validity of the youth form. J Pediatr. 2004;145:39–46.

    Article  PubMed  Google Scholar 

  221. Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P. The PedsQL in pediatric cancer: reliability and validity of the pediatric quality of life inventory generic core scales, multidimensional fatigue scale, and cancer module. Cancer. 2002;94:2090–106.

    Article  PubMed  Google Scholar 

  222. Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A. The pediatric cancer quality of life inventory-32 (PCQL-32): I. Reliability and validity. Cancer. 1998;82:1184–96.

    Article  CAS  PubMed  Google Scholar 

  223. Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A, Castro CM. The Pediatric Cancer Quality of Life Inventory (PCQL). I. Instrument development, descriptive statistics, and cross-informant variance. J Behav Med. 1998;21:179–204.

    Article  CAS  PubMed  Google Scholar 

  224. Varni JW, Rode CA, Seid M, Katz ER, Friedman-Bender A, Quiggins DJL. The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32). II. Feasibility and range of measurement. J Behav Med. 1999;22:397–406.

    Article  CAS  PubMed  Google Scholar 

  225. Goodwin DA, Boggs SR, Graham-Pole J. Development and validation of the pediatric oncology quality of life scale. Psychol Assess. 1994;6:321–8.

    Article  Google Scholar 

  226. Bijttebier P, Vercruysse T, Vertommen H, Gool SWV, Uyttebroeck A, Brock P. New evidence on the reliability and validity of the pediatric oncology quality of life scale. Psychol Health. 2001;16:461.

    Article  Google Scholar 

  227. Davis K, Lai JS, Hahn EA, Cella D. Conducting routine fatigue assessments for use in clinical oncology practice: patient and provider perspectives. Support Care Cancer. 2008;16:379–86.

    Article  PubMed  Google Scholar 

  228. Brundage M, Feldman-Stewart D, Leis A, et al. Communicating quality of life information to cancer patients: a study of six presentation formats. J Clin Oncol. 2005;23:6949–56.

    Article  CAS  PubMed  Google Scholar 

  229. Kuijpers W, Groen WG, Oldenburg HS, Wouters MW, Aaronson NK, van Harten WH. Development of MijnAVL, an interactive Portal to empower breast and lung cancer survivors: an iterative, multi-stakeholder approach. JMIR Res Protoc. 2015;4:e14.

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Center for Health Innovation and Outcomes Research at Northwell Health, Manhasset, NY, USA

    Elizabeth J. Siembida

  2. Wake Forest School of Medicine and Wake Forest Baptist Comprehensive Cancer Center, Winston Salem, NC, USA

    John M. Salsman

Authors
  1. Elizabeth J. Siembida
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. John M. Salsman
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to John M. Salsman .

Editor information

Editors and Affiliations

  1. Department of Surgery, University of Pittsburgh, Pittsburgh, PA, USA

    Jennifer L. Steel

  2. Liver Transplantation Institute, Inonu University, Malatya, Turkey

    Brian I. Carr

Rights and permissions

Reprints and permissions

Copyright information

© 2022 The Author(s), under exclusive license to Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Siembida, E.J., Salsman, J.M. (2022). Quality of Life. In: Steel, J.L., Carr, B.I. (eds) Psychological Aspects of Cancer. Springer, Cham. https://doi.org/10.1007/978-3-030-85702-8_24

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-85702-8_24

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-85701-1

  • Online ISBN: 978-3-030-85702-8

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation