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
Kroenke, K. (2001). Studying symptoms: Sampling and measurement issues. Annals of Internal Medicine, 134(9 Pt 2), 844–853.
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.
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.
Kroenke, K. (2003). Patients presenting with somatic complaints: Epidemiology, psychiatric comorbidity and management. International Journal of Methods in Psychiatric Research, 12(1), 34–43.
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.
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.
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.
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.
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.
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.
Institute of Medicine. (2001). Cossing the quality chasm: A new health system for the 21st century. Washington, D. C.: National Academies Press.
Hurtado, M. P., Swift, E. K., & Corrigan, J. M. (2001). Envisioning the national health care quality report. Washington, D. C.: National Academies Press.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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Patient-Centered Outcomes Research Institute Contract ME-1403-12043.
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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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DOI: https://doi.org/10.1007/s11136-018-1968-3