Letter to the Editor
Comment on: http://www.jmir.org/2021/8/e25002/
We would like to respond to the letter written by Rutters et al  with regard to our paper, “Measurement Properties of Patient-Reported Outcome Measures for Diabetes: Systematic Review” [ ]. We noted the concerns from Rutters et al [ ], but we would like to offer some explanations.
First, the selection criteria of our systematic review were restricted to patient-reported outcome measures (PROMs) that are tested in patients with type 2 diabetes mellitus (T2DM) only. The study on the development and validation of the National Diabetes Register Survey included patients with other forms of diabetes (ie, type 1 diabetes) , and, therefore, was excluded from our analysis. We focused on T2DM since existing evidence has demonstrated that patients’ behaviors influencing disease management differ by different diabetes subtypes [ , ]. Therefore, the PROMs used to guide interventions and patient care may be different and should be reviewed separately. Another consideration was related to our concerns that combining all validation studies of PROMs in different forms of diabetes would reduce the readability of the paper due to the large number of studies available.
Second, due to the large number of PROMs included in the review, we decided to analyze the measurement properties of the PROMs on a per-PROM basis instead to maintain the readability of the paper. We also agree with Rutters et al  that many health-related quality of life (HRQOL) PROM subscales do not measure HRQOL but actually measure overall quality of life, and that characteristics of the individual or environment should be considered patient-reported experience measures. This is further complicated by the issue of problematic definitions of HRQOL in the literature [ ]; thus, further study detailing the different constructs measured by subscales of PROMs is warranted.
We are grateful that the authors have taken the effort to provide constructive comments on our paper. The issues brought up by Rutters et al  echoed the need to have consensus between clinicians and psychometrists to measure what is relevant to patients. The content of the existing PROMs is indeed heterogeneous, and there are too many PROMs that have questionable validity. We agree that more awareness is needed, including developing and implementing core outcome sets for patients with diabetes.
In conclusion, there is a need for a systematic review to summarize all available PROMs for patients with diabetes with emphasis on the constructs being measured, as well as a comprehensive evidence synthesis of the measurement properties of all subscales of PROMs (which was not the focus of our systematic review). Clinicians and researchers should work with patients with diabetes to develop a core outcome measurement set for use in diabetes care and research.
Conflicts of Interest
- Rutters F, Elsman E, Groeneveld L, Langendoen-Gort M, Mokkink L, Terwee C. Challenges in Measuring What Matters to Patients With Diabetes Comment on "Measurement Properties of Patient-Reported Outcome Measures for Diabetes: Systematic Review". J Med Internet Res 2022 Mar [FREE Full text] [CrossRef]
- Wee PJL, Kwan YH, Loh DHF, Phang JK, Puar TH, Østbye T, et al. Measurement Properties of Patient-Reported Outcome Measures for Diabetes: Systematic Review. J Med Internet Res 2021 Aug 13;23(8):e25002 [FREE Full text] [CrossRef] [Medline]
- Engström MS, Leksell J, Johansson UB, Eeg-Olofsson K, Borg S, Palaszewski B, et al. A disease-specific questionnaire for measuring patient-reported outcomes and experiences in the Swedish National Diabetes Register: Development and evaluation of content validity, face validity, and test-retest reliability. Patient Educ Couns 2018 Jan;101(1):139-146. [CrossRef] [Medline]
- Trento M, Tomelini M, Basile M, Borgo E, Passera P, Miselli V, et al. The locus of control in patients with Type 1 and Type 2 diabetes managed by individual and group care. Diabet Med 2008 Jan;25(1):86-90. [CrossRef] [Medline]
- Sanz-Nogués C, Mustafa M, Burke H, O'Brien T, Coleman CM. Knowledge, Perceptions and Concerns of Diabetes -Associated Complications Among Individuals Living with Type 1 and Type 2 Diabetes Mellitus. Healthcare (Basel) 2020 Jan 30;8(1) [FREE Full text] [CrossRef] [Medline]
- Karimi M, Brazier J. Health, Health-Related Quality of Life, and Quality of Life: What is the Difference? Pharmacoeconomics 2016 Jul;34(7):645-649. [CrossRef] [Medline]
|HRQOL: health-related quality of life|
|PROM: patient-reported outcome measure|
|T2DM: type 2 diabetes mellitus|
Edited by T Leung; This is a non–peer-reviewed article. submitted 13.03.22; accepted 21.03.22; published 31.03.22Copyright
©Yu Heng Kwan, Jie Kie Phang, Sungwon Yoon, Lian Leng Low. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 31.03.2022.
This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.