Black, N. (2013). Patient reported outcome measures could help transform healthcare. BMJ, 346, f167. https://doi.org/10.1136/bmj.f167
Wolff, A. C., Dresselhuis, A., Hejazi, S., Dixon, D., Gibson, D., Howard, A. F., et al. (2021). Healthcare provider characteristics that influence the implementation of individual-level Patient-Centered Outcome Measure (PROM) and Patient-Reported Experience Measure (PREM) data across practice settings: a protocol for a mixed methods systematic review with a narrative synthesis. Systematic Reviews, 10(1), 169. https://doi.org/10.1186/s13643-021-01725-2
Article PubMed PubMed Central Google Scholar
Calvert, M. J., Cruz Rivera, S., Retzer, A., Hughes, S. E., Campbell, L., Molony-Oates, B., et al. (2022). Patient reported outcome assessment must be inclusive and equitable. Nature Medicine, 28(6), 1120–1124. https://doi.org/10.1038/s41591-022-01781-8
Article CAS PubMed Google Scholar
Litchfield, I., Greenfield, S., Turner, G. M., Finnikin, S., & Calvert, M. J. (2021). Implementing PROMs in routine clinical care: a qualitative exploration of GP perspectives. BJGP Open. https://doi.org/10.3399/bjgpopen20X101135
Article PubMed PubMed Central Google Scholar
United States Food and Drug Administration (2024) Patient-Focused Drug Development Guidance Series for Enhancing the Incorporation of the Patient’s Voice in Medical Product Development and Regulatory Decision Making. FDA. Retrieved September 20, 2024, from https://www.fda.gov/drugs/development-approval-process-drugs/fda-patient-focused-drug-development-guidance-series-enhancing-incorporation-patients-voice-medical
United States Food and Drug Administration (2021) Roadmap to Patient-Focused Outcome Measurement in Clinical Trials (text version). FDA. Retrieved September 20, 2024 from https://www.fda.gov/drugs/drug-development-tool-ddt-qualification-programs/roadmap-patient-focused-outcome-measurement-clinical-trials-text-version
Gagnier, J. J., Lai, J., Mokkink, L. B., & Terwee, C. B. (2021). COSMIN reporting guideline for studies on measurement properties of patient-reported outcome measures. Quality of Life Research, 30(8), 2197–2218. https://doi.org/10.1007/s11136-021-02822-4
Comins, J. D., Brodersen, J., Siersma, V., Jensen, J., Hansen, C. F., & Krogsgaard, M. R. (2021). How to develop a condition-specific PROM. Scandinavian Journal of Medicine and Science in Sports, 31(6), 1216–1224. https://doi.org/10.1111/sms.13868
Krogsgaard, M. R., Brodersen, J., Christensen, K. B., Siersma, V., Jensen, J., Hansen, C. F., et al. (2021). How to translate and locally adapt a PROM. Assessment of cross-cultural differential item functioning. Scandinavian Journal of Medicine and Science in Sports, 31(5), 999–1008. https://doi.org/10.1111/sms.13854
Shelton, C. L., Smith, A. F., & Mort, M. (2014). Opening up the black box: an introduction to qualitative research methods in anaesthesia. Anaesthesia, 69(3), 270–280. https://doi.org/10.1111/anae.12517
Article CAS PubMed Google Scholar
Sin, C. H. (2007). Using software to open up the ‘black box’ of qualitative data analysis in evaluations: the experience of a multi-site team using NUD*IST version 6. Evaluation, 13(1), 110–120. https://doi.org/10.1177/1356389007073684
Morse, J. M. (1994). Critical issues in qualitative research methods. Thousand Oaks: SAGE.
Munoz, J. M. (2017). Global business intelligence. Routledge.
Slone, D. J. (2009). Visualizing qualitative information. Qual Rep, 14(3), 489–497.
Rubinson, C. (2019). Presenting qualitative comparative analysis: notation, tabular layout, and visualization. Methodol Innov, 12(2), 2059799119862110. https://doi.org/10.1177/2059799119862110
Pokorny, J. J., Norman, A., Zanesco, A. P., Bauer-Wu, S., Sahdra, B. K., & Saron, C. D. (2018). Network analysis for the visualization and analysis of qualitative data. Psychological Methods, 23(1), 169–183. https://doi.org/10.1037/met0000129
Guetterman, T. C., Fàbregues, S., & Sakakibara, R. (2021). Visuals in joint displays to represent integration in mixed methods research: a methodological review. Methods Psychol, 5, 100080. https://doi.org/10.1016/j.metip.2021.100080
Hjollund, N. H. I. (2019). Fifteen years’ use of patient-reported outcome measures at the group and patient levels: trend analysis. Journal of Medical Internet Research, 21(9), e15856. https://doi.org/10.2196/15856
Article PubMed PubMed Central Google Scholar
Churruca, K., Pomare, C., Ellis, L. A., Long, J. C., Henderson, S. B., Murphy, L. E. D., et al. (2021). Patient-Reported Outcome Measures (PROMs): a review of generic and condition-specific measures and a discussion of trends and issues. Health Expectations, 24(4), 1015–1024. https://doi.org/10.1111/hex.13254
Article PubMed PubMed Central Google Scholar
Arnet, I., Messerli, M., Oezvegyi, J., Hersberger, K., & Sahm, L. (2020). Translation to English, cross-cultural adaptation, and pilot testing of the self-report questionnaire on swallowing difficulties with medication intake and coping strategies (SWAMECO) for adults with polypharmacy. British Medical Journal Open, 10(8), e036761. https://doi.org/10.1136/bmjopen-2020-036761
Victorson, D. E., Cella, D., Grund, H., & Judson, M. A. (2014). A conceptual model of health-related quality of life in sarcoidosis. Quality of Life Research, 23(1), 89–101. https://doi.org/10.1007/s11136-013-0438-1
Parslow, R. M., Anderson, N., Byrne, D., Haywood, K. L., Shaw, A., & Crawley, E. (2020). Development of a conceptual framework to underpin a health-related quality of life outcome measure in paediatric Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME): prioritisation through card ranking. Quality of Life Research, 29(5), 1169–1181. https://doi.org/10.1007/s11136-019-02399-z
Article PubMed PubMed Central Google Scholar
van Nooten, F. E., Cline, J., Elash, C. A., Paty, J., & Reaney, M. (2018). Development and content validation of a patient-reported endometriosis pain daily diary. Health and Quality of Life Outcomes, 16, 3. https://doi.org/10.1186/s12955-017-0819-1
Article PubMed PubMed Central Google Scholar
Brod, M., Alolga, S. L., Beck, J. F., Wilkinson, L., Højbjerre, L., & Rasmussen, M. H. (2017). Understanding burden of illness for child growth hormone deficiency. Quality of Life Research, 26(7), 1673–1686. https://doi.org/10.1007/s11136-017-1529-1
Article PubMed PubMed Central Google Scholar
Kelly, L., Potter, C. M., Hunter, C., Gibbons, E., Fitzpatrick, R., Jenkinson, C., & Peters, M. (2016). Refinement of the Long-Term Conditions Questionnaire (LTCQ): Patient and expert stakeholder opinion. Patient Relat Outcome Meas, 7, 183–193. https://doi.org/10.2147/PROM.S116987
Article PubMed PubMed Central Google Scholar
Wiklund, I., Holmstrom, S., Stoker, M., Wyrwich, K. W., & Devine, M. (2013). Are treatment benefits in neuropathic pain reflected in the self assessment of treatment questionnaire? Health and Quality of Life Outcomes, 11, 8. https://doi.org/10.1186/1477-7525-11-8
Article PubMed PubMed Central Google Scholar
Hareendran, A., Mannix, S., Skalicky, A., Bayliss, M., Blumenfeld, A., Buse, D. C., et al. (2017). Development and exploration of the content validity of a patient-reported outcome measure to evaluate the impact of migraine- the Migraine Physical Function Impact Diary (MPFID). Health and Quality of Life Outcomes, 15, 224. https://doi.org/10.1186/s12955-017-0799-1
Article PubMed PubMed Central Google Scholar
Eskildsen, N. B., Ross, L., Bulsara, C., Dietz, S. M., Thomsen, T. G., Groenvold, M., et al. (2020). Development and content validation of a questionnaire measuring patient empowerment in cancer follow-up. Quality of Life Research, 29(8), 2253–2274. https://doi.org/10.1007/s11136-020-02483-9
Robson, J. C., Dawson, J., Cronholm, P. F., Milman, N., Kellom, K. S., Ashdown, S., et al. (2018). Health-related quality of life in ANCA-associated vasculitis and item generation for a disease-specific patient-reported outcome measure. Patient Relat Outcome Meas, 9, 17–34. https://doi.org/10.2147/PROM.S144992
Article PubMed PubMed Central Google Scholar
Kleinman, L., Mannix, S., Arnold, L. M., Burbridge, C., Howard, K., McQuarrie, K., et al. (2014). Assessment of sleep in patients with fibromyalgia: qualitative development of the fibromyalgia sleep diary. Health and Quality of Life Outcomes, 12, 111. https://doi.org/10.1186/s12955-014-0111-6
Article PubMed PubMed Central Google Scholar
Hareendran, A., Palsgrove, A. C., Mocarski, M., Schaefer, M. L., Setyawan, J., Carson, R., & Make, B. (2013). The development of a patient-reported outcome measure for assessing nighttime symptoms of chronic obstructive pulmonary disease. Health and Quality of Life Outcomes, 11, 104. https://doi.org/10.1186/1477-7525-11-104
Article PubMed PubMed Central Google Scholar
Crocker, H., Jenkinson, C., & Peters, M. (2018). Quality of life in coeliac disease: qualitative interviews to develop candidate items for the Coeliac disease assessment questionnaire. Patient Relat Outcome Meas, 9, 211–220.
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