Design and feasibility of integrating personalized PRO dashboards into prostate cancer care

Journal of the American Medical Informatics Association

Volumn 23, Issue 1, 2016, Pages 38-47

  Hartzler, Andrea L ^a   Izard, Jason P ^b   Dalkin, Bruce L ^c   Mikles, Sean P ^d   Gore, John L ^c  

^a GROUP HEALTH RESEARCH INSTITUTE   (United States)

^b QUEEN S UNIVERSITY   (Canada)

^c UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE   (United States)

^d UNIVERSITY OF WASHINGTON   (United States)

Author keywords

Data display; Patient centered care; Patient provider communication; Patient reported outcomes; User computer interface

Indexed keywords

ADULT; AGED; ARTICLE; CANCER PATIENT; CLINICAL ARTICLE; COOPERATION; DOCTOR PATIENT RELATION; FEASIBILITY STUDY; FOLLOW UP; HEALTH CARE PERSONNEL; HUMAN; INFORMATION PROCESSING; INTEGRATIVE MEDICINE; INTERVIEW; MALE; NEEDS ASSESSMENT; OUTCOME ASSESSMENT; PATIENT CARE; PATIENT COMPLIANCE; PATIENT REPORTED OUTCOME; PATIENT SATISFACTION; PERSONALIZED MEDICINE; PROSTATE CANCER; QUALITY OF LIFE; SELF CONCEPT; SELF REPORT; COMPUTER INTERFACE; PROSTATIC NEOPLASMS;

FEASIBILITY STUDIES; FOCUS GROUPS; HUMANS; MALE; PATIENT OUTCOME ASSESSMENT; PATIENT-CENTERED CARE; PROSTATIC NEOPLASMS; QUALITY OF LIFE; USER-COMPUTER INTERFACE;

EID: 84959489388     PISSN: 10675027     EISSN: 1527974X     Source Type: Journal    
DOI: 10.1093/jamia/ocv101     Document Type: Article

References (69)

1. Gore JL, Kwan L, Lee SP, Reiter RE, Litwin MS. Survivorship beyond convalescence: 48-month quality-of-life outcomes after treatment for localized prostate cancer. J Natl Cancer Inst. 2009;101(12):888-892.
2. Litwin MS, Hays RD, Fink A, et al. Quality-of-life outcomes in men treated for localized prostate cancer. JAMA. 1995;273(2):129-135.
3. Sanda MG, Dunn RL, Michalski J, Sandler HM, Northouse L, HembroffL. Quality of life and satisfaction with outcome among prostate-cancer survivors. N Engl J Med. 2008;358(12):1250-1261.
4. Stanford JL, Feng Z, Hamilton AS, et al. Urinary and sexual function after radical prostatectomy for clinically localized prostate cancer: the Prostate Cancer Outcomes Study. JAMA. 2000;283(3):354-360.
5. Litwin MS, Lubeck DP, Henning JM, Carroll PR. Differences in urologist and patient assessments of health related quality of life in men with prostate cancer: results of the CaPSURE database. J Urol. 1998;159(6):1988-1992.
6. Spencer BA, Steinberg M, Malin J, Adams J, Litwin MS. Quality-of-care indicators for early-stage prostate cancer. J Clin Oncol. 2003;21:1928-1936.
7. Greenhalgh J, Meadows K. The effectiveness of the use of patient-based measures of health in routine practice in improving the process and outcomes of patient care: A literature review. J Eval Clin Pract. 1999;5(4): 401-416.
8. 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.
9. Chen J, Ou L, Hollis SJ. A systematic review of the impact of routine collection of patient reported outcome measures on patients, providers and health organisations in an oncologic setting. BMC Health Serv Res. 2013;13(1):211.
10. Devlin NJ, Appleby J. Getting the Most Out of PROMS: Putting Health Outcomes at the Heart of NHS Decision Making. London, UK: King's Fund; 2010.
11. 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(5 Suppl 1):S3-S11.
12. Lipscomb J, Reeve BB, Clauser SB, et al. Patient-reported outcomes assessment in cancer trials: taking stock, moving forward. J Clin Oncol. 2007;25(32):5133-5140.
13. Donaldson MS. Taking stock of health-related quality-of-life measurement in oncology practice in the United States. J Natl Cancer Inst Monogr. 2004;33:155-167.
14. 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.
15. Jensen RE, Rothrock NE, DeWitt EM, et al. The role of technical advances in the adoption and integration of patient-reported outcomes in clinical care. Med Care. 2015;53(2):153-159.
16. Marshall S, Haywood K, Fitzpatrick R. Impact of patient-reported outcome measures on routine practice: a structured review. J Eval Clin Pract. 2006;12(5):559-568.
17. 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(8):1029-1035.
18. Berry DL, Hong F, Halpenny B, et al. Electronic self-report assessment for cancer and self-care support: results of a multicenter randomized trial. J Clin Oncol. 2014;32(3):199-205.
19. Berry DL. Patient-reported symptoms and quality of life integrated into clinical cancer care. Semin Oncol Nurs. 2011;27(3):203-210.
20. Basch E, Abernethy AP, Mullins CD, et al. Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology. J Clin Oncol. 2012;30(34): 4249-4255.
21. 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.
22. 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(7):dju132.
23. 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):S12-S20.
24. Jensen RE, Snyder CF, Abernethy AP, et al. Review of electronic patientreported outcomes systems used in cancer clinical care. J Oncol Pract. 2014;10(4):e215-e222.
25. Deering MJ. Patient-Generated Health Data and Health IT. Washington, DC: Office of the National Coordinator for Health Information Technology, US Dept of Health and Human Services; 2013.
26. 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(6):1975-1991.
27. Taenzer P, Bultz BD, Carlson LE, et al. Impact of computerized quality of life screening on physician behaviour and patient satisfaction in lung cancer outpatients. Psychooncology. 2000;9(3):203-213.
28. Shneiderman B, Plaisant C, Hesse, B. Improving health and healthcare with interactive visualization tools. IEEE Computer. 2013;46(5):58-66.
29. Dolan JG, Veazie PJ, Russ AJ. Development and initial evaluation of a treatment decision dashboard. BMC Med Inform Decis Making. 2013;13(1):51.
30. Detmar SB, Muller MJ, Schornagel JH, Wever LDV, Aaronson NK. Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. JAMA. 2002;288(23):3027-3034.
31. Hilarius DL, Kloeg PH, Gundy CM, Aaronson NK. Use of health-related quality-of-life assessments in daily clinical oncology nursing practice: a community hospital-based intervention study. Cancer. 2008;113(3): 628-637.
32. Fortin JM, Hirota LK, Bond BE, O'Connor AM, Col NF. Identifying patient preferences for communicating risk estimates: a descriptive pilot study. BMC Med Inform Decis Making. 2001;1(1):2.
33. 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(28):6949-6956.
34. Feldman-Stewart D, Brundage MD, Zotov V. Further insight into the perception of quantitative information: judgments of gist in treatment decisions. Med Decis Making. 2007;27(1):34-43.
35. Hawley ST, Zikmund-Fisher B, Ubel P, Jancovic A, Lucas T, Fagerlin, A. The impact of the format of graphical presentation on health-related knowledge and treatment choices. Patient Educ Couns. 2008;73(3):448-455.
36. International Organization for Standardization (ISO). Ergonomics of Humansystem Interaction-Part 210: Human-centered Design for Interactive Systems. Geneva, Switzerland: ISO; 2010. ISO 9241-210:2010.
37. Johnson CM, Johnson TR, Zhang J. A user-centered framework for redesigning health care interfaces. J Biomed Inform. 2005;38(1):75-87.
38. Wei JT, Dunn RL, Litwin MS, Sandler HM, Sanda MG. 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(6):899-905.
39. Martin NE, Massey L, Stowell C, et al. Defining a standard set of patientcentered outcomes for men with localized prostate cancer. Eur Urol. 2015;67(3):460-467.
40. Schmidt S, Garin O, Pardo Y, et al. Assessing quality of life in patients with prostate cancer: a systematic and standardized comparison of available instruments. Qual Life Res. 2014;23(8):2169-2181.
41. Muller MJ, Kuhn S. Participatory design. Commun ACM. 1993;36(6):24-28.
42. Israel BA, Schulz AJ, Parker EA, Becker AB, Allen A, Guzman JR. Critical issues in developing and following CBPR Principles. In: Minkler M, Wallerstein N, eds. Community-based Participatory Research For Health: From Process to Outcomes. 2nd ed. San Francisco: Jossey-Bass; 2008.
43. Alexander G, Staggers N. A systematic review of the designs of clinical technology: findings and recommendations for future research. ANS Adv Nurs Sci. 2009;32(3):252-279.
44. Brennan PF, Downs S, Casper G. Project HealthDesign: rethinking the power and potential of personal health records. J Biomed Inform. 2010;43(5): S3-S5.
45. Wolpin S, Stewart M. A deliberate and rigorous approach to development of patient-centered technologies. Semin Oncol Nurs. 2011;27(3):183-191.
46. Sox CM, Gribbons WM, Loring BA, Mandl KD, Batista R, Porter SC. Patientcentered design of an information management module for a personally controlled health record. J Med Internet Res. 2010;12(3):e36.
47. Koppel R, Metlay JP, Cohen A, et al. Role of CPOE systems in facilitating medication errors. JAMA. 2005;293(10):1197-1203.
48. Middleton B, Bloomrosen M, Dente MA, et al. Enhancing patient safety and quality of care by improving the usability of electronic health record systems: recommendations from AMIA. J Am Med Inform Assoc. 2013;20(e1):e2-e8.
49. Sittig DF, Wright A, OsheroffJA, et al. Grand challenges in clinical decision support. J Biomed Inform. 2008;41(2):387-392.
50. Delbecq AL, Van de Ven AH, Gustafson DH. Group Techniques for Program Planning: a Guide to Nominal Group and Delphi Processes. Middleton: Green Briar Press; 1986.
51. Izard J, Hartzler A, Avery DI, Shih C, Dalkin BL, Gore JL. User-centered design of quality of life reports for clinical care of patients with prostate cancer. Surg. 2014;155(5):789-796.
52. Galesic M, Garcia-Retamero R. Graph literacy: a crosscultural comparison. Med Decis Making. 2011;31(3):444-457.
53. Molich R, Nielsen J. Improving a human-computer dialogue. Commun ACM. 1990;33(3):338-348.
54. Jeffries R, Desurvire H. Usability testing vs. heuristic evaluation: was there a contest? ACM SIGCHI Bull. 1992;24(4):39-41.
55. Nielsen J. Heuristic evaluation. In: Nielsen J, Mack RL, eds. Usability Inspection Methods. New York, NY: John Wiley & Sons; 1994:25-62.
56. Wharton C, Bradford J, Jeffries R, Franzke M. Applying cognitive walkthroughs to more complex user interfaces: experiences, issues and recommendations. In: Bauersfeld P, Bennett J, Lynch G, eds. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '92). New York, NY: ACM; 1992:381-388.
57. Lepore SJ, Helgeson VS. Psychoeducational support group enhances quality of life after prostate cancer. Canc Res Ther Contr. 1999;8:81-91.
58. Maly RC, Frank JC, Marshall GN, DiMatteo MR, Reuben DB. Perceived efficacy in patient-physician interactions (PEPPI): validation of an instrument in older persons. J Am Geriatr Soc. 1998;46(7):889-894.
59. Sepucha KR, Belkora JK, Mutchnick S, Esserman LJ. Consultation planning to help breast cancer patients prepare for medical consultations: effect on communication and satisfaction for patients and physicians. J Clin Oncol. 2002;20(11):2695-2700.
60. Smith JK, Falvo D, McKillip J, Pitz G. Measuring patient perceptions of the patient-doctor interaction. Development of the PDIS. Eval Health Prof. 1984;7(1):77-94.
61. Bowman MA, Herndon A, Sharp PC, Dignan MB. Assessment of the patientdoctor interaction scale for measuring patient satisfaction. Patient Edu Couns. 1992;19(1): 75-80.
62. R Development Core Team. R: A Language and Environment for Statistical Computing. Vienna, Austria: R Foundation for Statistical Computing; 2011.
63. Schield M. Percentage Graphs in USA Today Snapshots Online. In: American Statistical Association Proceedings of the Section on Statistical Education [CDROM]. Alexandria, VA: American Statistical Association; 2006:2364-2371. www. StatLit.org/pdf/2006SchieldASA.pdf. Accessed January 4, 2015.
64. Franklin L, Plaisant C, Shneiderman B. An information-centric framework for designing patient-centered medical decision aids and risk communication. AMIA Annu Symp Proc. 2013;2013:456-465.
65. Dimitropoulos L. Health IT Research Priorities To Support the Health Care Delivery System of the Future. Rockville, MD: Agency for Healthcare Research and Quality; 2014. Publications No: 14-0072-EF.
66. Kreuter MW, Wray RJ. Tailored and targeted health communication: strategies for enhancing information relevance. Am J Health Behav. 2003;27(Suppl 3):S227-S232.
67. Fagerlin A, Zikmund-Fisher BJ, Ubel PA. "If I'm better than average, then I'm ok?": comparative information influences beliefs about risk and benefits. Patient Educ Couns. 2007;69(1-3):140-144.
68. Zikmund-Fisher BJ, Windschitl PD, Exe N, Ubel PA. "I'll do what they did": social norm information and cancer treatment decisions. Patient Educ Couns. 2011;85(2):225-229.
69. Dalkin BL, Christopher BA, Shawler D. Health-related quality of life outcomes after radical prostatectomy: attention to study design and the patient-based importance of single-surgeon studies. Urol Oncol. 2006;24(1):28-32.