Patient‐reported outcome measures (PROMs) to guide clinical care: recommendations and challenges
Authors: Anupriya Agarwal and Rachael L Morton
Published online: 18 July 2022
In reply
In reply: We thank Trujols and colleagues1 for sharing their insightful comments regarding the incorporation of patient‐reported outcome measures (PROMs) in clinical care. We read with interest their opinion on the involvement of patients in the development of PROMs.
First, we agree with the authors that genuine participation of patients and the community is recommended and that, to date, it has been limited. Even though patient involvement in the development of PROMs is recommended, a review of current PROMs development has shown that this has not been the case. A scoping review of studies describing the development of PROMs demonstrated that patients were mostly involved during item development (58.5%), closely followed by testing for comprehensibility (50.8%).2 Despite this, over one‐quarter of studies showed that patients had no involvement in the development of the item. Further attention to patient involvement in the development of PROMs is recommended.
Second, in our article,3 our main focus was to use validated PROMs to guide clinical care and collect the evidence of treatment effectiveness and toxicity. The PROMs outlined in the article have been shown to effectively collect information regarding treatment effectiveness4 and toxicity5 in multiple clinical trials and real‐world population.
Third, we acknowledge from a developers’ perspective that the involvement of patients in the design and item generation of PROMs is associated with pragmatic challenges that meaningfully incorporate patient expertise. Ensuring that patients’ views and expertise are grounded in the PROMs development process was found to be important; developers identified limited research budgets and time restrictions to be a constraining factor.6
In summary, our article outlines methods of PROMs inclusion to guide clinical care. We recommend the use of validated PROMs that can highlight patient experiences or symptoms of disease and its treatment which are not captured through objective measures. We support the development of patient‐generated, patient‐centred and patient‐valued PROMs for specific instruments and their use in the future.
Competing interests
No relevant disclosures.
References
- Trujols J, Duran‐Sindreu S, Portella MJ. Patient‐reported outcome measures (PROMs) to guide clinical care: recommendations and challenges [letter]. Med J Aust 2022; 217: 110.
- Wiering B, de Boer D, Delnoij D. Patient involvement in the development of patient‐reported outcome measures: a scoping review. Health Expect 2017; 20: 11‐23.
- Agarwal A, Pain T, Levesque JF, et al. Patient‐reported outcome measures (PROMs) to guide clinical care: recommendations and challenges. Med J Aust 2022; 216: 9‐11. https://www.mja.com.au/journal/2022/216/1/patient‐reported‐outcome‐measures‐proms‐guide‐clinical‐care‐recommendations‐and
- Kluzek S, Dean B, Wartolowska KA. Patient‐reported outcome measures (PROMs) as proof of treatment efficacy. BMJ Evid Based Med 2022; 27: 153‐155.
- Basch E, Deal AM, Kris MG, et al. Symptom monitoring with patient‐reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol 2016; 34: 557‐565.
- Wiering B, de Boer D, Delnoij D. Patient involvement in the development of patient‐reported outcome measures: the developers’ perspective. BMC Health Serv Res 2017; 17: 635.
Linked content
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MJA Perspective: Patient‐reported outcome measures (PROMs) to guide clinical care: recommendations and challenges
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MJA Letter: Patient‐reported outcome measures (PROMs) to guide clinical care: recommendations and challenges