Patient-reported outcomes in cancer survivorship

References

• Ervik M, Lam F, Ferlay J, et al. Cancer today. Lyon, France: International Agency for Research on Cancer; 2016.
   Google Scholar
• Society AC. Cancer Treatment & Survivorship Facts & Figures 2016–2017 [Internet]. 2016. Available from: http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-048074.pdf.
   Google Scholar
• Xiao C, Polomano R, Bruner DW. Comparison between patient-reported and clinician-observed symptoms in oncology. Cancer Nurs. 2013;36:E1–E16.
   PubMed Web of Science ®Google Scholar
• Falchook AD, Green R, Knowles ME, et al. Comparison of patient- and practitioner-reported toxic effects associated with chemoradiotherapy for head and neck cancer. JAMA Otolaryngol Head Neck Surg. 2016;142:517–523.
   PubMed Web of Science ®Google Scholar
• Basch E, Jia X, Heller G, et al. Adverse symptom event reporting by patients vs clinicians: relationships with clinical outcomes. J Natl Cancer Inst. 2009;101:1624–1632.
   PubMed Web of Science ®Google Scholar
• Velikova G, Booth L, Smith AB, et al. Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. J Clin Oncol. 2004;22:714–724.
   PubMed Web of Science ®Google Scholar
• Reilly CM, Bruner DW, Mitchell SA, et al. A literature synthesis of symptom prevalence and severity in persons receiving active cancer treatment. Support Care Cancer. 2013;21:1525–1550.
   PubMed Web of Science ®Google Scholar
• 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;85:365–376.
   PubMed Web of Science ®Google Scholar
• 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;11:570–579.
   PubMed Web of Science ®Google Scholar
• McHorney CA, Ware JE Jr, Raczek AE. The MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care. 1993;31:247–263.
   PubMed Web of Science ®Google Scholar
• 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;34:220–233.
   PubMed Web of Science ®Google Scholar
• Ware JE, Jr, Kosinski M, Dewey JE, Gandek B. How to score and interpret single-item health status measures: a manual for users of the SF-8TM Health Survey. Lincoln (RI): Quality Metric Incorporated; 2001.
   Google Scholar
• 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;14:2756–2768.
   PubMed Web of Science ®Google Scholar
• Brady MJ, Cella DF, Mo F, et al. Reliability and validity of the Functional Assessment of Cancer Therapy-Breast quality-of-life instrument. J Clin Oncol. 1997;15:974–986.
   PubMed Web of Science ®Google Scholar
• Koch L, Jansen L, Herrmann A, et al. Quality of life in long-term breast cancer survivors: a 10-year longitudinal population-based study. Acta Oncol. 2013;52:1119–1128.
   PubMed Web of Science ®Google Scholar
• Neuner JM, Zokoe N, McGinley EL, et al. Quality of life among a population-based cohort of older patients with breast cancer. Breast. 2014;23:609–616.
   PubMed Web of Science ®Google Scholar
• Fallowfield LJ, Leaity SK, Howell A, et al. Assessment of quality of life in women undergoing hormonal therapy for breast cancer: validation of an endocrine symptom subscale for the FACT-B. Breast Cancer Res Treat. 1999;55:189–199.
   PubMed Web of Science ®Google Scholar
• Cella D, Fallowfield L, Barker P, et al. Quality of life of postmenopausal women in the ATAC (“arimidex”, tamoxifen, alone or in combination) trial after completion of 5 years' adjuvant treatment for early breast cancer. Breast Cancer Res Treat. 2006;100:273–284.
   PubMed Web of Science ®Google Scholar
• Chen RC, Chang P, Vetter RJ, et al. Recommended patient-reported core set of symptoms to measure in prostate cancer treatment trials. J Natl Cancer Inst. 2014;106:dju132. doi: 10.1093/jnci/dju132.
   PubMedGoogle Scholar
• Wei JT, Dunn RL, Litwin MS, et al. Development and validation of the expanded prostate cancer index composite (EPIC) for comprehensive assessment of health-related quality of life in men with prostate cancer. Urology. 2000;56:899–905.
   PubMed Web of Science ®Google Scholar
• Szymanski KM, Wei JT, Dunn RL, et al. Development and validation of an abbreviated version of the expanded prostate cancer index composite instrument for measuring health-related quality of life among prostate cancer survivors. Urology. 2010;76:1245–1250.
   PubMed Web of Science ®Google Scholar
• Chang P, Szymanski KM, Dunn RL, et al. Expanded prostate cancer index composite for clinical practice: development and validation of a practical health related quality of life instrument for use in the routine clinical care of patients with prostate cancer. J Urol. 2011;186:865–872.
   PubMed Web of Science ®Google Scholar
• Clark JA, Talcott JA. Symptom indexes to assess outcomes of treatment for early prostate cancer. Med Care. 2001;39:1118–1130.
   PubMed Web of Science ®Google Scholar
• van Andel G, Bottomley A, Fossa SD, et al. An international field study of the EORTC QLQ-PR25: a questionnaire for assessing the health-related quality of life of patients with prostate cancer. Eur J Cancer. 2008;44:2418–2424.
   PubMed Web of Science ®Google Scholar
• Esper P, Mo F, Chodak G, et al. Measuring quality of life in men with prostate cancer using the functional assessment of cancer therapy-prostate instrument. Urology. 1997;50:920–928.
   PubMed Web of Science ®Google Scholar
• Sanda MG, Dunn RL, Michalski J, et al. Quality of life and satisfaction with outcome among prostate-cancer survivors. N Engl J Med. 2008;358:1250–1261.
   PubMed Web of Science ®Google Scholar
• Chen RC, Clark JA, Talcott JA. Individualizing quality-of-life outcomes reporting: how localized prostate cancer treatments affect patients with different levels of baseline urinary, bowel, and sexual function. J Clin Oncol. 2009;27:3916–3922.
   PubMed Web of Science ®Google Scholar
• Sprangers MA, Te Velde A, Aaronson NK. The construction and testing of the EORTC colorectal cancer-specific quality of life questionnaire module (QLQ-CR38). European Organization for Research and Treatment of Cancer Study Group on Quality of Life. Eur J Cancer. 1999;35:238–247.
   PubMed Web of Science ®Google Scholar
• Ward WL, Hahn EA, Mo F, et al. Reliability and validity of the Functional Assessment of Cancer Therapy-Colorectal (FACT-C) quality of life instrument. Qual Life Res. 1999;8:181–195.
   PubMed Web of Science ®Google Scholar
• Mols F, Lemmens V, Bosscha K, et al. Living with the physical and mental consequences of an ostomy: a study among 1-10-year rectal cancer survivors from the population-based PROFILES registry. Psychooncology. 2014;23:998–1004.
   PubMed Web of Science ®Google Scholar
• Hodgkinson K, Butow P, Hunt GE, et al. The development and evaluation of a measure to assess cancer survivors' unmet supportive care needs: the CaSUN (Cancer Survivors' Unmet Needs measure). Psychooncology. 2007;16:796–804.
   PubMed Web of Science ®Google Scholar
• Hodgkinson K, Butow P, Hobbs KM, et al. Assessing unmet supportive care needs in partners of cancer survivors: the development and evaluation of the Cancer Survivors' Partners Unmet Needs measure (CaSPUN). Psychooncology. 2007;16:805–813.
   PubMed Web of Science ®Google Scholar
• Hodgkinson K, Butow P, Hunt GE, et al. Breast cancer survivors' supportive care needs 2-10 years after diagnosis. Support Care Cancer. 2007;15:515–523.
   PubMed Web of Science ®Google Scholar
• Hodgkinson K, Butow P, Hunt GE, et al. Life after cancer: couples' and partners' psychological adjustment and supportive care needs. Support Care Cancer. 2007;15:405–415.
   PubMed Web of Science ®Google Scholar
• Crespi CM, Ganz PA, Petersen L, et al. Refinement and psychometric evaluation of the impact of cancer scale. J Natl Cancer Inst. 2008;100:1530–1541.
   PubMed Web of Science ®Google Scholar
• Oerlemans S, Smith SK, Crespi CM, et al. Assessing the impact of cancer among Dutch non-Hodgkin lymphoma survivors compared with their American counterparts: a cross-national study. Psychooncology. 2013;22:1258–1265.
   PubMed Web of Science ®Google Scholar
• Avis NE, Smith KW, McGraw S, et al. Assessing quality of life in adult cancer survivors (QLACS). Qual Life Res. 2005;14:1007–1023.
   PubMed Web of Science ®Google Scholar
• Avis NE, Ip E, Foley KL. Evaluation of the Quality of Life in Adult Cancer Survivors (QLACS) scale for long-term cancer survivors in a sample of breast cancer survivors. Health Qual Life Outcomes. 2006;4:92.
   PubMed Web of Science ®Google Scholar
• Sohl SJ, Levine B, Avis NE. Evaluation of the Quality of Life in Adult Cancer Survivors (QLACS) scale for early post-treatment breast cancer survivors. Qual Life Res. 2015;24:205–212.
   PubMed Web of Science ®Google Scholar
• Wright EP, Kiely M, Johnston C, et al. Development and evaluation of an instrument to assess social difficulties in routine oncology practice. Qual Life Res. 2005;14:373–386.
   PubMed Web of Science ®Google Scholar
• Wright P, Downing A, Morris EJ, et al. Identifying social distress: a cross-sectional survey of social outcomes 12 to 36 months after colorectal cancer diagnosis. J Clin Oncol. 2015;33:3423–3430.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• Maher J, McConnell H. New pathways of care for cancer survivors: adding the numbers. Br J Cancer. 2011;105(Suppl 1):S5–S10.
   PubMed Web of Science ®Google Scholar
• Donovan JL, Hamdy FC, Lane JA, et al. Patient-reported outcomes after monitoring, surgery, or radiotherapy for prostate cancer. N Engl J Med. 2016;375:1425–1437.
   PubMed Web of Science ®Google Scholar