Integration of Electronic Patient-Reported Outcomes (ePROs) into pediatric clinic settings across hematology/oncology/bone marrow transplant

Clinical Practice in Pediatric Psychology

Volumn 2, Issue 1, 2014, Pages 39-49

  Myrvik, Matthew P ^a   Beverung, Lauren M ^a   Panepinto, Julie A ^a   Igler, Eva C ^a   Englebert, Nicole ^a   Bingen, Kristin M ^a  

^a MEDICAL COLLEGE OF WISCONSIN   (United States)

Author keywords

hematology; oncology; patient reported outcomes; pediatric

Indexed keywords

EID: 84986317175     PISSN: 21694826     EISSN: 21694834     Source Type: Journal    
DOI: 10.1037/cpp0000052     Document Type: Article

References (27)

1. Berry, D. L., Blumenstein, B. A., Halpenny, B., Wolpin, S., Fann, J. R., Austin-Seymour, M., McCorkle, R. (2011). Enhancing patient-provider communication with the electronic self-report assessment for cancer: A randomized trial. Journal of Clinical Oncology, 29, 1029-1035. doi: 10.1200/JCO.2010.30.3909
2. Bruera, E. (2008). Routine symptom assessment: Good for practice and good for business. Supportive Care in Cancer, 16, 537-538. doi:10.1007/ s00520-008-0433-1
3. Carlson, L. E., Speca, M., Hagen, N., & Taenzer, P. (2001). Computerized quality-of-life screening in a cancer pain clinic. Journal of Palliative Care, 17, 46-52.
4. Cella, D., Yount, S., Rothrock, N., Gershon, R., Cook, K., Reeve, B., Group, P. C. (2007). The Patient-Reported Outcomes Measurement Information System (PROMIS): Progress of an NIH Roadmap cooperative group during its first two years. Medical Care, 45(5 Suppl 1), S3-S11. doi: 10.1097/01.mlr.0000258615.42478.55
5. Detmar, S. B., Muller, M. J., Schornagel, J. H., Wever, L. D., & Aaronson, N. K. (2002). Healthrelated quality-of-life assessments and patientphysician communication: A randomized controlled trial. Journal of the American Medical Association, 288, 3027-3034. doi:10.1001/jama .288.23.3027
6. DeWitt, E. M., Stucky, B. D., Thissen, D., Irwin, D. E., Langer, M., Varni, J. W., Dewalt, D. A. (2011). Construction of the eight-item patientreported outcomes measurement information system pediatric physical function scales: Built using item response theory. Journal of Clinical Epidemiology, 64, 794-804. doi:10.1016/j.jclinepi.2010 .10.012
7. Eiser, C., & Jenney, M. (2007). Measuring quality of life. Archives of Disease in Childhood, 92, 348-350. doi:10.1136/adc.2005.086405
8. Engelen, V., Detmar, S., Koopman, H., Maurice-Stam, H., Caron, H., Hoogerbrugge, P., Grootenhuis, M. (2012). Reporting health-related quality of life scores to physicians during routine follow-up visits of pediatric oncology patients: Is it effective?. Pediatric Blood & Cancer, 58, 766-774. doi:10.1002/pbc.23158
9. Engelen, V., van Zwieten, M., Koopman, H., Detmar, S., Caron, H., Brons, P., Grootenhuis, M. (2012). The influence of patient reported outcomes on the discussion of psychosocial issues in children with cancer. Pediatric Blood & Cancer, 59, 161-166. doi:10.1002/pbc.24089
10. Food and Drug Administration. (2006). Guidance for industry: Patient report outcome measures: Use in clinical medical product development to support labelling claims: Draft guidance. Health & Quality of Life Outcomes, 4(79). doi:10.1186/1477-7525-4-79
11. Hart, C. N., Kelleher, K. J., Drotar, D., & Scholle, S. H. (2007). Parent-provider communication and parental satisfaction with care of children with psychosocial problems. Patient Education and Counseling, 68, 179-185. doi:10.1016/j.pec.2007 .06.003
12. Hays, R. M., Valentine, J., Haynes, G., Geyer, J. R., Villareale, N., McKinstry, B., Churchill, S. S. (2006). The Seattle pediatric palliative care project: Effects on family satisfaction and healthrelated quality of life. Journal of Palliative Medicine, 9, 716-728. doi:10.1089/jpm.2006.9.716
13. Hsiao, J. L., Evan, E. E., & Zeltzer, L. K. (2007). Parent and child perspectives on physician com- munication in pediatric palliative care. Palliative & Supportive Care, 5, 355-365. doi:10.1017/ S1478951507000557
14. Irwin, D. E., Stucky, B., Langer, M. M., Thissen, D., Dewitt, E. M., Lai, J. S., DeWalt, D. A. (2010). An item response analysis of the pediatric PROMIS anxiety and depressive symptoms scales. Quality of Life Research, 19, 595-607. doi: 10.1007/s11136-010-9619-3
15. Irwin, D. E., Stucky, B. D., Langer, M. M., Thissen, D., DeWitt, E. M., Lai, J. S., DeWalt, D. A. (2012). PROMIS pediatric anger scale: An item response theory analysis. Quality of Life Research, 21, 697-706. doi:10.1007/s11136-011-9969-5
16. Irwin, D. E., Stucky, B. D., Thissen, D., Dewitt, E. M., Lai, J. S., Yeatts, K., DeWalt, D. A. (2010). Sampling plan and patient characteristics of the PROMIS pediatrics large-scale survey. Quality of Life Research, 19, 585-594. doi: 10.1007/s11136-010-9618-4
17. Khanna, D., Maranian, P., Rothrock, N., Cella, D., Gershon, R., Khanna, P. P., Hays, R. D. (2012). Feasibility and construct validity of PROMIS and "legacy" instruments in an academic scleroderma clinic. Value Health, 15, 128-134. doi:10.1016/j .jval.2011.08.006
18. Lohr, K. N., & Zebrack, B. J. (2009). Using patientreported outcomes in clinical practice: Challenges and opportunities. Quality of Life Research, 18, 99-107. doi:10.1007/s11136-008-9413-7
19. MacLaren, V. V., & Best, L. A. (2010). Multiple addictive behaviors in young adults: Student norms for the Shorter PROMIS Questionnaire. Addictive Behaviors, 35, 252-255. doi:10.1016/j .addbeh.2009.09.023
20. Mah, J. K., Tough, S., Fung, T., Douglas-England, K., & Verhoef, M. (2006). Adolescent quality of life and satisfaction with care. Journal of Adolescent Health, 38, 607.e1-607.e7. doi:10.1016/j .jadohealth.2005.08.004
21. McKenna, S. P. (2011). Measuring patient-reported outcomes: Moving beyond misplaced common sense to hard science. BMC Medicine, 9, 86. doi: 10.1186/1741-7015-9-86
22. Menard, J. C., Hinds, P. S., Jacobs, S. S., Cranston, K., Wang, J., Dewalt, D. A., & Gross, H. E. (2014). Feasibility and acceptability of the patientreported outcomes measurement information system measures in children and adolescents in active cancer treatment and survivorship. Cancer Nursing, 37, 66-74. doi:10.1097/NCC.0b013e3182a0e23d Patient Protection and Affordable Care Act, 42 U.S. C. 3501-3511 (2010).
23. Rothrock, N. E., Hays, R. D., Spritzer, K., Yount, S. E., Riley, W., & Cella, D. (2010). 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). Journal of Clinical Epidemiology, 63, 1195-1204. doi: 10.1016/j.jclinepi.2010.04.012
24. Snyder, C. F., Jensen, R. E., Geller, G., Carducci, M. A., & Wu, A. W. (2010). Relevant content for a patient-reported outcomes questionnaire for use in oncology clinical practice: Putting doctors and patients on the same p. Quality of Life Research, 19, 1045-1055. doi:10.1007/s11136-010-9655-z
25. Varni, J. W., Burwinkle, T. M., & Lane, M. M. (2005). Health-related quality of life measurement in pediatric clinical practice: An appraisal and precept for future research and application. Health & Quality of Life Outcomes, 3, 34. doi:10.1186/1477-7525-3-34
26. Varni, J. W., Stucky, B. D., Thissen, D., Dewitt, E. M., Irwin, D. E., Lai, J. S., Dewalt, D. A. (2010). PROMIS pediatric pain interference scale: An item response theory analysis of the pediatric pain item bank. The Journal of Pain, 11, 1109-1119. doi:10.1016/j.jpain.2010.02.005
27. Velikova, G., Booth, L., Smith, A. B., Brown, P. M., Lynch, P., Brown, J. M., & Selby, P. J. (2004). Measuring quality of life in routine oncology practice improves communication and patient wellbeing: A randomized controlled trial. Journal of Clinical Oncology, 22, 714-724. doi:10.1200/JCO .2004.06.078