Opinion
EDITORIAL
Missing Patients’ Symptoms in Cancer Care Delivery— The Importance of Patient-Reported Outcomes Ethan Basch, MD
As cancer care professionals, we care deeply about our patients’ symptoms. Indeed, symptom management is a cornerstone of oncology practice. Yet, many studies demonstrate that we consistently miss up to half of our patients’ symptoms. Several years ago, a methodologist colleague at Memorial Sloan Kettering demonstrated to me that I do no better detecting symptoms than any other oncologist, despite my belief that I am a relatively “patient-centered” clinician Related article (he did this by analyzing research data sets that include both clinician and patient symptom reports). The implications of our missing this information are profound: undermanagement of symptoms, unnecessary suffering, avoidable emergency department visits and hospitalizations, and treatment interruptions.1-3 In clinical trials, this phenomenon can lead to underestimation of risk compared with benefit.4 In the current issue of JAMA Oncology, Montemurro et al5 add to this literature through a large prospective multicenter study among 604 women receiving adjuvant chemotherapy for breast cancer who were asked to self-report 10 symptoms at cycles 1 and 3. Clinicians simultaneously reported symptoms into the medical charts, which is standard of care, and were blinded to patients’ self-reports. The first finding of note is that across all study sites, patients completed their questionnaires 98% of the time. This is a substantial accomplishment, and demonstrates the feasibility of collecting patient-reported outcomes in routine oncology practice. Moreover, similar to prior published findings,6-8 clinicians missed up to half of the symptoms reported by patients—including severe symptoms that can potentially lead to serious complications. Patient reports detected changes in symptoms from chemotherapy cycles 1 to 3, including significantly worsened dysgeusia and dyspnea, with improved vomiting, diarrhea, and pain. In contrast, clinicians only detected worsened dyspnea. This is also a novel finding, suggesting that patient reporting adds valuable information about changes in symptoms over time. Systematic collection of patient reports improves not only detection of symptoms but also clinical outcomes. Prior research has found that integration of patient-reported outcomes into routine cancer care improves the efficiency of symptom assessment,9 patient-clinician communication and satisfaction,10,11 and symptom control and quality of life12,13 and prevents emergency department visits.14 Given these findings, how can we as a professional community move to integrate patient-reported outcomes in our jamaoncology.com
practices to improve symptom detection and management without disrupting efficiency or workflow? Multiple webbased systems have been developed and successfully implemented at individual cancer centers and hospitals for patient self-reporting.15 Some of the key logistical and technical considerations have been outlined by the International Society for Quality of Life Research.16 Key considerations include: 1. Thoughtful selection of which symptoms to assess based on the population of interest. The National Cancer Institute (NCI) has recommended “core” symptoms to assess across cancer populations.17 Physical functioning should also be assessed. 2. Identification of appropriate questionnaires. Good options for symptom assessment include the NCI’s PatientReported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE), the MD Anderson Symptom Inventory (MDASI), or the Edmonton Symptom Assessment System (ESAS). For physical functioning, either the Patient-Reported Outcome Measurement Information System (PROMIS) Global-06 question or the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 physical function questions work well. 3. Development of technology for electronic collection of patient-reported information via the web or automated telephone systems, with compliance monitoring and backup collection by staff if patients miss a report. Several organizations offer inexpensive software for this, and many hospital patient portals already include the ability to generate web surveys for patients. 4. Integration of intuitive longitudinal reports for clinicians that are integrated into existing workflow, ideally within the electronic health record (EHR) system. Two major steps are necessary to move toward widespread implementation of patient reporting in clinical practice. First, EHR companies need to improve their online portals for collecting patient-reported outcomes and allow clinicians to visualize and track this information intuitively within the EHR—similar to other clinical parameters like laboratory values. This will make it easier for clinicians to incorporate this information into practice18 and will enable data aggregation for quality assessment 19 and comparativeeffectiveness research.20 Second, consensus from professional organizations about which outcomes to measure will assist with standardization. The American Society of Clinical Oncology (ASCO) is already moving in this direction, with a dedicated Patient(Reprinted) JAMA Oncology Published online December 23, 2015
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://oncology.jamanetwork.com/ by a University of California - San Diego User on 01/27/2016
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Opinion Editorial
Reported Outcomes Committee that is exploring how this information can be integrated into practice and into ASCO’s CancerLinQ initiative. ARTICLE INFORMATION Author Affiliation: Cancer Outcomes Research Program, Lineberger Comprehensive Cancer Center, University of North Carolina, Chapel Hill. Corresponding Author: Ethan Basch, MD, Cancer Outcomes Research Group, University of North Carolina, 170 Manning Dr, CB 7305, Chapel Hill, NC 27599 ([email protected]).
5. Montemurro F, Mittica G, Cagnazzo C, et al. Self-evaluation of adjuvant chemotherapy-related adverse effects by patients with breast cancer [published online December 23, 2015]. JAMA Oncol. doi:10.1001/jamaoncol.2015.4720.
Published Online: December 23, 2015. doi:10.1001/jamaoncol.2015.4719.
6. 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(17):3485-3490.
Conflict of Interest Disclosures: Dr Basch was principal investigator for a prior contract held by Memorial Sloan Kettering Cancer Center from the National Cancer Institute to develop the PRO-CTCAE.
7. Laugsand EA, Sprangers MA, Bjordal K, Skorpen F, Kaasa S, Klepstad P. Health care providers underestimate symptom intensities of cancer patients: a multicenter European study. Health Qual Life Outcomes. 2010;8:104.
REFERENCES
8. Atkinson TM, Li Y, Coffey CW, et al. Reliability of adverse symptom event reporting by clinicians. Qual Life Res. 2012;21(7):1159-1164.
1. Fisch MJ, Lee JW, Weiss M, et al. Prospective, observational study of pain and analgesic prescribing in medical oncology outpatients with breast, colorectal, lung, or prostate cancer. J Clin Oncol. 2012;30(16):1980-1988. 2. Mayer DK, Travers D, Wyss A, Leak A, Waller A. Why do patients with cancer visit emergency departments? results of a 2008 population study in North Carolina. J Clin Oncol. 2011;29(19):2683-2688. 3. Henry DH, Viswanathan HN, Elkin EP, Traina S, Wade S, Cella D. Symptoms and treatment burden associated with cancer treatment: results from a cross-sectional national survey in the U.S. Support Care Cancer. 2008;16(7):791-801. 4. Di Maio M, 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(8):910-915.
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Hopefully, these developments will make it easier for our practices to widely collect and use patient-reported information, thereby improving the patient experience and clinical outcomes.
9. Santana MJ, Feeny D, Johnson JA, et al. Assessing the use of health-related quality of life measures in the routine clinical care of lung-transplant patients. Qual Life Res. 2010;19(3): 371-379. 10. Detmar SB, Muller MJ, Schornagel JH, Wever LD, Aaronson NK. Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. JAMA. 2002;288 (23):3027-3034. 11. 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 (4):714-724. 12. Valderas JM, Kotzeva A, Espallargues M, et al. The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature. Qual Life Res. 2008;17(2):179-193.
13. Kotronoulas G, Kearney N, Maguire R, et al. What is the value of the routine use of patient-reported outcome measures toward improvement of patient outcomes, processes of care, and health service outcomes in cancer care? a systematic review of controlled trials. J Clin Oncol. 2014;32(14):1480-1501. 14. 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. In press. 15. Jensen RE, Snyder CF, Abernethy AP, et al. Review of electronic patient-reported outcomes systems used in cancer clinical care. J Oncol Pract. 2014;10(4):e215-e222. 16. 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 (8):1305-1314. 17. Reeve BB, Mitchell SA, Dueck AC, et al. Recommended patient-reported core set of symptoms to measure in adult cancer treatment trials. J Natl Cancer Inst. 2014;106(7):dju129. 18. Basch E, Abernethy AP. Commentary: encouraging clinicians to incorporate longitudinal patient-reported symptoms in routine clinical practice. J Oncol Pract. 2011;7(1):23-25. 19. Basch E, Snyder C, McNiff K, et al. Patient-reported outcome performance measures in oncology. J Oncol Pract. 2014;10(3):209-211. 20. Wu AW, Kharrazi H, Boulware LE, Snyder CF. Measure once, cut twice--adding patient-reported outcome measures to the electronic health record for comparative effectiveness research. J Clin Epidemiol. 2013;66(8)(suppl):S12-S20.
JAMA Oncology Published online December 23, 2015 (Reprinted)
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://oncology.jamanetwork.com/ by a University of California - San Diego User on 01/27/2016
jamaoncology.com
EDITORIAL
Missing Patients’ Symptoms in Cancer Care Delivery— The Importance of Patient-Reported Outcomes Ethan Basch, MD
As cancer care professionals, we care deeply about our patients’ symptoms. Indeed, symptom management is a cornerstone of oncology practice. Yet, many studies demonstrate that we consistently miss up to half of our patients’ symptoms. Several years ago, a methodologist colleague at Memorial Sloan Kettering demonstrated to me that I do no better detecting symptoms than any other oncologist, despite my belief that I am a relatively “patient-centered” clinician Related article (he did this by analyzing research data sets that include both clinician and patient symptom reports). The implications of our missing this information are profound: undermanagement of symptoms, unnecessary suffering, avoidable emergency department visits and hospitalizations, and treatment interruptions.1-3 In clinical trials, this phenomenon can lead to underestimation of risk compared with benefit.4 In the current issue of JAMA Oncology, Montemurro et al5 add to this literature through a large prospective multicenter study among 604 women receiving adjuvant chemotherapy for breast cancer who were asked to self-report 10 symptoms at cycles 1 and 3. Clinicians simultaneously reported symptoms into the medical charts, which is standard of care, and were blinded to patients’ self-reports. The first finding of note is that across all study sites, patients completed their questionnaires 98% of the time. This is a substantial accomplishment, and demonstrates the feasibility of collecting patient-reported outcomes in routine oncology practice. Moreover, similar to prior published findings,6-8 clinicians missed up to half of the symptoms reported by patients—including severe symptoms that can potentially lead to serious complications. Patient reports detected changes in symptoms from chemotherapy cycles 1 to 3, including significantly worsened dysgeusia and dyspnea, with improved vomiting, diarrhea, and pain. In contrast, clinicians only detected worsened dyspnea. This is also a novel finding, suggesting that patient reporting adds valuable information about changes in symptoms over time. Systematic collection of patient reports improves not only detection of symptoms but also clinical outcomes. Prior research has found that integration of patient-reported outcomes into routine cancer care improves the efficiency of symptom assessment,9 patient-clinician communication and satisfaction,10,11 and symptom control and quality of life12,13 and prevents emergency department visits.14 Given these findings, how can we as a professional community move to integrate patient-reported outcomes in our jamaoncology.com
practices to improve symptom detection and management without disrupting efficiency or workflow? Multiple webbased systems have been developed and successfully implemented at individual cancer centers and hospitals for patient self-reporting.15 Some of the key logistical and technical considerations have been outlined by the International Society for Quality of Life Research.16 Key considerations include: 1. Thoughtful selection of which symptoms to assess based on the population of interest. The National Cancer Institute (NCI) has recommended “core” symptoms to assess across cancer populations.17 Physical functioning should also be assessed. 2. Identification of appropriate questionnaires. Good options for symptom assessment include the NCI’s PatientReported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE), the MD Anderson Symptom Inventory (MDASI), or the Edmonton Symptom Assessment System (ESAS). For physical functioning, either the Patient-Reported Outcome Measurement Information System (PROMIS) Global-06 question or the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 physical function questions work well. 3. Development of technology for electronic collection of patient-reported information via the web or automated telephone systems, with compliance monitoring and backup collection by staff if patients miss a report. Several organizations offer inexpensive software for this, and many hospital patient portals already include the ability to generate web surveys for patients. 4. Integration of intuitive longitudinal reports for clinicians that are integrated into existing workflow, ideally within the electronic health record (EHR) system. Two major steps are necessary to move toward widespread implementation of patient reporting in clinical practice. First, EHR companies need to improve their online portals for collecting patient-reported outcomes and allow clinicians to visualize and track this information intuitively within the EHR—similar to other clinical parameters like laboratory values. This will make it easier for clinicians to incorporate this information into practice18 and will enable data aggregation for quality assessment 19 and comparativeeffectiveness research.20 Second, consensus from professional organizations about which outcomes to measure will assist with standardization. The American Society of Clinical Oncology (ASCO) is already moving in this direction, with a dedicated Patient(Reprinted) JAMA Oncology Published online December 23, 2015
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://oncology.jamanetwork.com/ by a University of California - San Diego User on 01/27/2016
E1
Opinion Editorial
Reported Outcomes Committee that is exploring how this information can be integrated into practice and into ASCO’s CancerLinQ initiative. ARTICLE INFORMATION Author Affiliation: Cancer Outcomes Research Program, Lineberger Comprehensive Cancer Center, University of North Carolina, Chapel Hill. Corresponding Author: Ethan Basch, MD, Cancer Outcomes Research Group, University of North Carolina, 170 Manning Dr, CB 7305, Chapel Hill, NC 27599 ([email protected]).
5. Montemurro F, Mittica G, Cagnazzo C, et al. Self-evaluation of adjuvant chemotherapy-related adverse effects by patients with breast cancer [published online December 23, 2015]. JAMA Oncol. doi:10.1001/jamaoncol.2015.4720.
Published Online: December 23, 2015. doi:10.1001/jamaoncol.2015.4719.
6. 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(17):3485-3490.
Conflict of Interest Disclosures: Dr Basch was principal investigator for a prior contract held by Memorial Sloan Kettering Cancer Center from the National Cancer Institute to develop the PRO-CTCAE.
7. Laugsand EA, Sprangers MA, Bjordal K, Skorpen F, Kaasa S, Klepstad P. Health care providers underestimate symptom intensities of cancer patients: a multicenter European study. Health Qual Life Outcomes. 2010;8:104.
REFERENCES
8. Atkinson TM, Li Y, Coffey CW, et al. Reliability of adverse symptom event reporting by clinicians. Qual Life Res. 2012;21(7):1159-1164.
1. Fisch MJ, Lee JW, Weiss M, et al. Prospective, observational study of pain and analgesic prescribing in medical oncology outpatients with breast, colorectal, lung, or prostate cancer. J Clin Oncol. 2012;30(16):1980-1988. 2. Mayer DK, Travers D, Wyss A, Leak A, Waller A. Why do patients with cancer visit emergency departments? results of a 2008 population study in North Carolina. J Clin Oncol. 2011;29(19):2683-2688. 3. Henry DH, Viswanathan HN, Elkin EP, Traina S, Wade S, Cella D. Symptoms and treatment burden associated with cancer treatment: results from a cross-sectional national survey in the U.S. Support Care Cancer. 2008;16(7):791-801. 4. Di Maio M, 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(8):910-915.
E2
Hopefully, these developments will make it easier for our practices to widely collect and use patient-reported information, thereby improving the patient experience and clinical outcomes.
9. Santana MJ, Feeny D, Johnson JA, et al. Assessing the use of health-related quality of life measures in the routine clinical care of lung-transplant patients. Qual Life Res. 2010;19(3): 371-379. 10. Detmar SB, Muller MJ, Schornagel JH, Wever LD, Aaronson NK. Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. JAMA. 2002;288 (23):3027-3034. 11. 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 (4):714-724. 12. Valderas JM, Kotzeva A, Espallargues M, et al. The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature. Qual Life Res. 2008;17(2):179-193.
13. Kotronoulas G, Kearney N, Maguire R, et al. What is the value of the routine use of patient-reported outcome measures toward improvement of patient outcomes, processes of care, and health service outcomes in cancer care? a systematic review of controlled trials. J Clin Oncol. 2014;32(14):1480-1501. 14. 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. In press. 15. Jensen RE, Snyder CF, Abernethy AP, et al. Review of electronic patient-reported outcomes systems used in cancer clinical care. J Oncol Pract. 2014;10(4):e215-e222. 16. 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 (8):1305-1314. 17. Reeve BB, Mitchell SA, Dueck AC, et al. Recommended patient-reported core set of symptoms to measure in adult cancer treatment trials. J Natl Cancer Inst. 2014;106(7):dju129. 18. Basch E, Abernethy AP. Commentary: encouraging clinicians to incorporate longitudinal patient-reported symptoms in routine clinical practice. J Oncol Pract. 2011;7(1):23-25. 19. Basch E, Snyder C, McNiff K, et al. Patient-reported outcome performance measures in oncology. J Oncol Pract. 2014;10(3):209-211. 20. Wu AW, Kharrazi H, Boulware LE, Snyder CF. Measure once, cut twice--adding patient-reported outcome measures to the electronic health record for comparative effectiveness research. J Clin Epidemiol. 2013;66(8)(suppl):S12-S20.
JAMA Oncology Published online December 23, 2015 (Reprinted)
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://oncology.jamanetwork.com/ by a University of California - San Diego User on 01/27/2016
jamaoncology.com
