A qualitative study of patients’ perceptions of the utility of patient-reported outcome measures of symptoms in primary care clinics

Abstract

Purpose

Sleep, pain, anxiety, depression, and low energy/fatigue (SPADE pentad) symptoms are common, but often unrecognized and undertreated in primary care. In an effort to improve symptom outcomes, primary care clinics are integrating patient-reported outcome measures (PROs), such as the Patient-Reported Outcome Measurement Information System (PROMIS), into practice. Whether patients with SPADE symptoms perceive these measures as useful is unknown. The purpose of this qualitative study was to explore patients’ perceptions of the utility of symptom-based PROs in primary care.

Methods

As part of a mixed-methods study, 23 patients (age 24–77 years) with one or more SPADE symptoms participated in one-on-one interviews about the use, implementation and visual display of PROMIS. All interviews were audio-recorded, transcribed, and analyzed using thematic analysis.

Results

Five themes emerged: (1) PROs may foster communication about symptoms; (2) data from PROs may prompt clinical actions; (3) the visual display of symptom scores could be useful for patients and providers, though modifications may enhance interpretation; (4) implementation may vary according to patients’ perception of PRO features (e.g., length); and (5) PROs may be useful, but only to the extent that they are valued, prioritized, and used.

Conclusions

According to patients, the use of PROs to measure symptoms in primary care clinics has the potential to be useful. However, patients are reluctant to complete PROs if they perceive that clinicians do not use the measures to improve care. Barriers to implementation in primary care (e.g., duration of visit) should be addressed to enhance the utility of PROs. Clinical trial registration ClinicalTrials.gov ID: NCT02383862.

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References

  1. 1.

    Kroenke, K. (2001). Studying symptoms: Sampling and measurement issues. Annals of Internal Medicine, 134(9 Pt 2), 844–853.

    CAS  Article  Google Scholar 

  2. 2.

    Davis, L. L., Kroenke, K., Monahan, P., Kean, J., & Stump, T. E. (2016). The SPADE symptom cluster in primary care patients with chronic pain. The Clinical Journal of Pain, 32(5), 388–393. https://doi.org/10.1097/AJP.0000000000000286.

    Article  PubMed  PubMed Central  Google Scholar 

  3. 3.

    Lowe, B., Spitzer, R. L., Williams, J. B., Mussell, M., Schellberg, D., & Kroenke, K. (2008). Depression, anxiety and somatization in primary care: Syndrome overlap and functional impairment. General Hospital Psychiatry, 30(3), 191–199. https://doi.org/10.1016/j.genhosppsych.2008.01.001.

    Article  PubMed  Google Scholar 

  4. 4.

    Kroenke, K. (2003). Patients presenting with somatic complaints: Epidemiology, psychiatric comorbidity and management. International Journal of Methods in Psychiatric Research, 12(1), 34–43.

    Article  Google Scholar 

  5. 5.

    Theis, K. A., Roblin, D., Helmick, C. G., & Luo, R. (2017). Prevalence and causes of work disability among working-age U.S. adults, 2011–2013, NHIS. Disability and Health Journal. https://doi.org/10.1016/j.dhjo.2017.04.010.

    Article  PubMed  Google Scholar 

  6. 6.

    Gates, K., Petterson, S., Wingrove, P., Miller, B., & Klink, K. (2016). You can’t treat what you don’t diagnose: An analysis of the recognition of somatic presentations of depression and anxiety in primary care. Families, Systems, & Health, 34(4), 317–329. https://doi.org/10.1037/fsh0000229.

    Article  Google Scholar 

  7. 7.

    Wilhelm, K. A., Finch, A. W., Davenport, T. A., & Hickie, I. B. (2008). What can alert the general practitioner to people whose common mental health problems are unrecognised? The Medical Journal of Australia, 188(12 Suppl), S114–S118.

    PubMed  Google Scholar 

  8. 8.

    Aguera, L., Failde, I., Cervilla, J. A., Diaz-Fernandez, P., & Mico, J. A. (2010). Medically unexplained pain complaints are associated with underlying unrecognized mood disorders in primary care. BMC Family Practice, 11, 17. https://doi.org/10.1186/1471-2296-11-17.

    Article  PubMed  PubMed Central  Google Scholar 

  9. 9.

    Edwards, T. M., Stern, A., Clarke, D. D., Ivbijaro, G., & Kasney, L. M. (2010). The treatment of patients with medically unexplained symptoms in primary care: A review of the literature. Mental Health and Family Medicine, 7(4), 209–221.

    Google Scholar 

  10. 10.

    Bair, M. J., Robinson, R. L., Katon, W., & Kroenke, K. (2003). Depression and pain comorbidity: A literature review. Archives of Internal Medicine, 163(20), 2433–2445. https://doi.org/10.1001/archinte.163.20.2433.

    Article  PubMed  Google Scholar 

  11. 11.

    Institute of Medicine. (2001). Cossing the quality chasm: A new health system for the 21st century. Washington, D. C.: National Academies Press.

    Google Scholar 

  12. 12.

    Hurtado, M. P., Swift, E. K., & Corrigan, J. M. (2001). Envisioning the national health care quality report. Washington, D. C.: National Academies Press.

    Google Scholar 

  13. 13.

    Rathert, C., Wyrwich, M. D., & Boren, S. A. (2013). Patient-centered care and outcomes: A systematic review of the literature. Medical Care Research and Review, 70(4), 351–379. https://doi.org/10.1177/1077558712465774.

    Article  PubMed  Google Scholar 

  14. 14.

    Bertakis, K. D., & Azari, R. (2011). Patient-centered care is associated with decreased health care utilization. The Journal of the American Board of Family Medicine, 24(3), 229–239. https://doi.org/10.3122/jabfm.2011.03.100170.

    Article  PubMed  Google Scholar 

  15. 15.

    Greenhalgh, J. (2009). The applications of PROs in clinical practice: What are they, do they work, and why? Quality of Life Research, 18(1), 115–123.

    Article  Google Scholar 

  16. 16.

    US Food and Drug Administration. (2009). Guidance for industry patient reported outcome measures: Use in medical product development to support labeling claims. Federal Register, 74(35), 65132–65133.

    Google Scholar 

  17. 17.

    Santana, M. J., & Feeny, D. (2014). Framework to assess the effects of using patient-reported outcome measures in chronic care management. Quality of Life Research, 23(5), 1505–1513. https://doi.org/10.1007/s11136-013-0596-1.

    Article  PubMed  Google Scholar 

  18. 18.

    Greenhalgh, J., Dalkin, S., Gooding, K., Gibbons, E., Wright, J., Meads, D., et al. (2017). Functionality and feedback: A realist synthesis of the collation, interpretation and utilisation of patient-reported outcome measures data to improve patient care. Health Services and Delivery Research, 5(2), 1–280.

    Article  Google Scholar 

  19. 19.

    Boyce, M. B., Browne, J. P., & Greenhalgh, J. (2014). The experiences of professionals with using information from patient-reported outcome measures to improve the quality of healthcare: A systematic review of qualitative research. Bmj Quality & Safety, 23(6), 508–518. https://doi.org/10.1136/bmjqs-2013-002524.

    Article  Google Scholar 

  20. 20.

    Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., et al. (2010). The patient-reported outcomes measurement information system (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. Journal of Clinical Epidemiology, 63(11), 1179–1194. https://doi.org/10.1016/j.jclinepi.2010.04.011.

    Article  PubMed  PubMed Central  Google Scholar 

  21. 21.

    Cleeland, C. S., Mendoza, T. R., Wang, X. S., Chou, C., Harle, M. T., Morrissey, M., et al. (2000). Assessing symptom distress in cancer patients: The M.D. Anderson Symptom Inventory. Cancer, 89(7), 1634–1646.

    CAS  Article  Google Scholar 

  22. 22.

    Norman, G. R., Sloan, J. A., & Wyrwich, K. W. (2003). Interpretation of changes in health-related quality of life: The remarkable universality of half a standard deviation. Medical Care, 41(5), 582–592. https://doi.org/10.1097/01.MLR.0000062554.74615.4C.

    Article  PubMed  Google Scholar 

  23. 23.

    Kroenke, K., Talib, T. L., Stump, T. E., Kean, J., Haggstrom, D. A., DeChant, P., et al. (2018). Incorporating PROMIS symptom measures into primary care practice-a randomized clinical trial. Journal of General Internal Medicine. https://doi.org/10.1007/s11606-018-4391-0.

    Article  PubMed  Google Scholar 

  24. 24.

    Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.

    Article  Google Scholar 

  25. 25.

    Boeije, H. (2002). A purposeful approach to the constant comparative method in the analysis of qualitative interviews. Quality & Quantity, 36(4), 391–409. https://doi.org/10.1023/A:1020909529486.

    Article  Google Scholar 

  26. 26.

    Trujols, J., Portella, M. J., Iraurgi, I., Campins, M. J., Sinol, N., & de L. Cobos, J. P (2013). Patient-reported outcome measures: Are they patient-generated, patient-centred or patient-valued? Journal of Mental Health, 22(6), 555–562. https://doi.org/10.3109/09638237.2012.734653.

    Article  PubMed  Google Scholar 

  27. 27.

    Johnston, K. L., Lawrence, S. M., Dodds, N. E., Yu, L., Daley, D. C., & Pilkonis, P. A. (2016). Evaluating PROMIS(R) instruments and methods for patient-centered outcomes research: Patient and provider voices in a substance use treatment setting. Quality of Life Research, 25(3), 615–624. https://doi.org/10.1007/s11136-015-1131-3.

    Article  PubMed  Google Scholar 

  28. 28.

    Dowrick, C., Leydon, G. M., McBride, A., Howe, A., Burgess, H., Clarke, P., et al. (2009). Patients’ and doctors’ views on depression severity questionnaires incentivised in UK quality and outcomes framework: Qualitative study. BMJ, 338, b663. https://doi.org/10.1136/bmj.b663.

    Article  PubMed  Google Scholar 

  29. 29.

    Wikberg, C., Pettersson, A., Westman, J., Bjorkelund, C., & Petersson, E. L. (2016). Patients’ perspectives on the use of the Montgomery-Asberg depression rating scale self-assessment version in primary care. Scandinavian Journal of Primary Health Care, 34(4), 434–442. https://doi.org/10.1080/02813432.2016.1248635.

    Article  PubMed  PubMed Central  Google Scholar 

  30. 30.

    Snyder, C. F., Smith, K. C., Bantug, E. T., Tolbert, E. E., Blackford, A. L., Brundage, M. D., et al. (2017). What do these scores mean? Presenting patient-reported outcomes data to patients and clinicians to improve interpretability. Cancer, 123(10), 1848–1859. https://doi.org/10.1002/cncr.30530.

    Article  PubMed  PubMed Central  Google Scholar 

  31. 31.

    Kroenke, K. (2004). The many C’s of primary care. Journal of General Internal Medicine, 19(6), 708–709. https://doi.org/10.1111/j.1525-1497.2004.40401.x.

    Article  PubMed  PubMed Central  Google Scholar 

  32. 32.

    Arroll, B., Goodyear-Smith, F., Kerse, N., Fishman, T., & Gunn, J. (2005). Effect of the addition of a “help” question to two screening questions on specificity for diagnosis of depression in general practice: diagnostic validity study. BMJ, 331(7521), 884. https://doi.org/10.1136/bmj.38607.464537.7C.

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  33. 33.

    Kroenke, K. (2014). A practical and evidence-based approach to common symptoms: A narrative review. Annals of Internal Medicine, 161(8), 579–586. https://doi.org/10.7326/M14-0461.

    Article  PubMed  Google Scholar 

  34. 34.

    Chen, J., Ou, L., & Hollis, S. J. (2013). 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 Services Research, 13, 211. https://doi.org/10.1186/1472-6963-13-211.

    Article  PubMed  PubMed Central  Google Scholar 

  35. 35.

    Valderas, J. M., Kotzeva, A., Espallargues, M., Guyatt, G., Ferrans, C. E., Halyard, M. Y., et al. (2008). The impact of measuring patient-reported outcomes in clinical practice: A systematic review of the literature. Quality of Life Research, 17(2), 179–193. https://doi.org/10.1007/s11136-007-9295-0.

    CAS  Article  PubMed  Google Scholar 

  36. 36.

    Marshall, S., Haywood, K., & Fitzpatrick, R. (2006). Impact of patient-reported outcome measures on routine practice: A structured review. Journal of Evaluation in Clinical Practice, 12(5), 559–568. https://doi.org/10.1111/j.1365-2753.2006.00650.x.

    Article  PubMed  Google Scholar 

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Funding

Patient-Centered Outcomes Research Institute Contract ME-1403-12043.

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Correspondence to Tasneem L. Talib.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in the study.

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Talib, T.L., DeChant, P., Kean, J. et al. A qualitative study of patients’ perceptions of the utility of patient-reported outcome measures of symptoms in primary care clinics. Qual Life Res 27, 3157–3166 (2018). https://doi.org/10.1007/s11136-018-1968-3

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Keywords

  • Patient-reported outcome measures
  • Symptoms
  • Primary care
  • Qualitative