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<article xmlns:xlink="http://www.w3.org/1999/xlink" article-type="letter" dtd-version="2.0">
  <front>
    <journal-meta>
      <journal-id journal-id-type="publisher-id">JMIR</journal-id>
      <journal-id journal-id-type="nlm-ta">J Med Internet Res</journal-id>
      <journal-title>Journal of Medical Internet Research</journal-title>
      <issn pub-type="epub">1438-8871</issn>
      <publisher>
        <publisher-name>JMIR Publications</publisher-name>
        <publisher-loc>Toronto, Canada</publisher-loc>
      </publisher>
    </journal-meta>
    <article-meta>
      <article-id pub-id-type="publisher-id">v24i3e36876</article-id>
      <article-id pub-id-type="pmid">35357322</article-id>
      <article-id pub-id-type="doi">10.2196/36876</article-id>
      <article-categories>
        <subj-group subj-group-type="heading">
          <subject>Letter to the Editor</subject>
        </subj-group>
        <subj-group subj-group-type="article-type">
          <subject>Letter to the Editor</subject>
        </subj-group>
      </article-categories>
      <title-group>
        <article-title>Challenges in Measuring What Matters to Patients With Diabetes. Comment on “Measurement Properties of Patient-Reported Outcome Measures for Diabetes: Systematic Review”</article-title>
      </title-group>
      <contrib-group>
        <contrib contrib-type="editor">
          <name>
            <surname>Leung</surname>
            <given-names>Tiffany</given-names>
          </name>
        </contrib>
      </contrib-group>
      <contrib-group>
        <contrib id="contrib1" contrib-type="author" corresp="yes">
          <name name-style="western">
            <surname>Rutters</surname>
            <given-names>Femke</given-names>
          </name>
          <degrees>PhD</degrees>
          <xref rid="aff1" ref-type="aff">1</xref>
          <address>
            <institution>Department of Epidemiology and Data Science</institution>
            <institution>Amsterdam University Medical Centre, Location Vrije Universiteit Amsterdam</institution>
            <addr-line>De Boelelaan 1089a</addr-line>
            <addr-line>Amsterdam, 1081 HV</addr-line>
            <country>Netherlands</country>
            <phone>31 204445860</phone>
            <email>f.rutters@amsterdamumc.nl</email>
          </address>
          <ext-link ext-link-type="orcid">https://orcid.org/0000-0002-1008-678X</ext-link>
        </contrib>
        <contrib id="contrib2" contrib-type="author">
          <name name-style="western">
            <surname>Elsman</surname>
            <given-names>Ellen</given-names>
          </name>
          <degrees>PhD</degrees>
          <xref rid="aff1" ref-type="aff">1</xref>
          <ext-link ext-link-type="orcid">https://orcid.org/0000-0002-0680-6430</ext-link>
        </contrib>
        <contrib id="contrib3" contrib-type="author">
          <name name-style="western">
            <surname>Groeneveld</surname>
            <given-names>Lenka</given-names>
          </name>
          <degrees>MSc</degrees>
          <xref rid="aff1" ref-type="aff">1</xref>
          <ext-link ext-link-type="orcid">https://orcid.org/0000-0002-2901-6677</ext-link>
        </contrib>
        <contrib id="contrib4" contrib-type="author">
          <name name-style="western">
            <surname>Langendoen-Gort</surname>
            <given-names>Marlous</given-names>
          </name>
          <degrees>MSc</degrees>
          <xref rid="aff1" ref-type="aff">1</xref>
          <ext-link ext-link-type="orcid">https://orcid.org/0000-0001-5098-6128</ext-link>
        </contrib>
        <contrib id="contrib5" contrib-type="author">
          <name name-style="western">
            <surname>Mokkink</surname>
            <given-names>Lidwine</given-names>
          </name>
          <degrees>PhD</degrees>
          <xref rid="aff1" ref-type="aff">1</xref>
          <ext-link ext-link-type="orcid">https://orcid.org/0000-0001-6489-2827</ext-link>
        </contrib>
        <contrib id="contrib6" contrib-type="author">
          <name name-style="western">
            <surname>Terwee</surname>
            <given-names>Caroline</given-names>
          </name>
          <degrees>PhD</degrees>
          <xref rid="aff1" ref-type="aff">1</xref>
          <ext-link ext-link-type="orcid">https://orcid.org/0000-0003-4570-2826</ext-link>
        </contrib>
      </contrib-group>
      <aff id="aff1">
        <label>1</label>
        <institution>Department of Epidemiology and Data Science</institution>
        <institution>Amsterdam University Medical Centre, Location Vrije Universiteit Amsterdam</institution>
        <addr-line>Amsterdam</addr-line>
        <country>Netherlands</country>
      </aff>
      <author-notes>
        <corresp>Corresponding Author: Femke Rutters <email>f.rutters@amsterdamumc.nl</email></corresp>
      </author-notes>
      <pub-date pub-type="collection">
        <month>3</month>
        <year>2022</year>
      </pub-date>
      <pub-date pub-type="epub">
        <day>31</day>
        <month>3</month>
        <year>2022</year>
      </pub-date>
      <volume>24</volume>
      <issue>3</issue>
      <elocation-id>e36876</elocation-id>
      <history>
        <date date-type="received">
          <day>31</day>
          <month>1</month>
          <year>2022</year>
        </date>
        <date date-type="rev-request">
          <day>3</day>
          <month>2</month>
          <year>2022</year>
        </date>
        <date date-type="rev-recd">
          <day>9</day>
          <month>2</month>
          <year>2022</year>
        </date>
        <date date-type="accepted">
          <day>21</day>
          <month>3</month>
          <year>2022</year>
        </date>
      </history>
      <copyright-statement>©Femke Rutters, Ellen Elsman, Lenka Groeneveld, Marlous Langendoen-Gort, Lidwine Mokkink, Caroline Terwee. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 31.03.2022.</copyright-statement>
      <copyright-year>2022</copyright-year>
      <license license-type="open-access" xlink:href="https://creativecommons.org/licenses/by/4.0/">
        <p>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.</p>
      </license>
      <self-uri xlink:href="https://www.jmir.org/2022/3/e36876" xlink:type="simple"/>
      <related-article related-article-type="commentary-article" id="v23i8e25002" ext-link-type="doi" xlink:href="10.2196/25002" vol="23" page="e25002" xlink:type="simple">http://www.jmir.org/2021/8/e25002/</related-article>
      <related-article related-article-type="commentary" id="v24i3e37957" ext-link-type="doi" xlink:href="10.2196/37957" vol="24" page="e37957" xlink:type="simple">http://mhealth.jmir.org/2022/8/e37957/</related-article>
      <kwd-group>
        <kwd>systematic review</kwd>
        <kwd>measurement properties</kwd>
        <kwd>patient-reported outcome measures</kwd>
        <kwd>methodological quality</kwd>
        <kwd>level of evidence</kwd>
        <kwd>PROMs</kwd>
        <kwd>patient reported outcome</kwd>
        <kwd>diabetes</kwd>
      </kwd-group>
    </article-meta>
  </front>
  <body>
    <p>We would like to respond to Wee et al’s paper, “Measurement Properties of Patient-Reported Outcome Measures for Diabetes: Systematic Review” [<xref ref-type="bibr" rid="ref1">1</xref>]. We appreciate the herculean effort undertaken to summarize all diabetes-related patient-reported outcome measures (PROMs). However, we have some concerns.</p>
    <p>First, despite the large amount of identified PROMs (N=238), there are still many PROMs missing [<xref ref-type="bibr" rid="ref1">1</xref>]. In our systematic review of PROMs measuring health-related quality of life (HRQOL) in people with type 2 diabetes (currently under review), which was performed in the same time period and using the same databases, we identified 116 HRQOL PROMS. Of these, &#62;50 were missing in Wee et al’s review [<xref ref-type="bibr" rid="ref1">1</xref>]. Missing PROMs include, for example, the National Diabetes Register Survey [<xref ref-type="bibr" rid="ref2">2</xref>], which in our review showed the best content validity. We think this incompleteness is due to a lack of alternative search strategies, such as checking references. We were surprised that the authors [<xref ref-type="bibr" rid="ref1">1</xref>] identified no papers through hand-searching, while about one-fourth of the included papers in our review were identified through reference checking.</p>
    <p>Second, the authors [<xref ref-type="bibr" rid="ref1">1</xref>] used the COSMIN (Consensus-Based Standards for the Selection of Health Measurement Instruments) methodology to summarize the evidence on the quality (measurement properties) of the PROMs. However, contrary to the COSMIN guidelines, the quality of the PROMs was not rated for each PROM subscale separately, even though measurement properties can vary among subscales.</p>
    <p>The limitations of this review [<xref ref-type="bibr" rid="ref1">1</xref>] underscore the problematic status of PROMs in diabetes: there is no consensus on what doctors and scientists want to measure, and it is unclear what is most relevant to measure. The content of the existing PROMs is very heterogeneous; there are too many PROMs out there and many are of questionable validity. This hinders value-based health care and limits the value of PROMs when attempting to determine which treatment works most optimally. More awareness is needed, supported by recent initiatives on developing core outcome sets for people with diabetes [<xref ref-type="bibr" rid="ref3">3</xref>-<xref ref-type="bibr" rid="ref5">5</xref>]. We should start using those core outcome sets in our research and care for people with diabetes.</p>
    <p>In conclusion, there is still a need for a high-quality systematic overview of all available PROMs for people with diabetes, with emphasis on the constructs being measured, and a comprehensive evidence synthesis of the measurement properties of all (subscales of) PROMs. This would allow researchers and doctors working with people with diabetes to make informed choices on which PROMs to use for value-based health care.</p>
  </body>
  <back>
    <app-group/>
    <glossary>
      <title>Abbreviations</title>
      <def-list>
        <def-item>
          <term id="abb1">COSMIN</term>
          <def>
            <p>Consensus-Based Standards for the Selection of Health Measurement Instruments</p>
          </def>
        </def-item>
        <def-item>
          <term id="abb2">HRQOL</term>
          <def>
            <p>health-related quality of life</p>
          </def>
        </def-item>
        <def-item>
          <term id="abb3">PROM</term>
          <def>
            <p>patient-reported outcome measure</p>
          </def>
        </def-item>
      </def-list>
    </glossary>
    <fn-group>
      <fn fn-type="conflict">
        <p>None declared.</p>
      </fn>
    </fn-group>
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</article>
