{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T09:09:07Z","timestamp":1790845747590,"version":"4.1.0"},"reference-count":72,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2022,6,5]],"date-time":"2022-06-05T00:00:00Z","timestamp":1654387200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Clinical Transplantation"],"published-print":{"date-parts":[[2022,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Heart transplantation (HTX) is a well\u2010established treatment for suitable patients with end\u2010stage heart failure, intended to prolong their survival and improve their health\u2010related quality of life (HR\u2010QoL). No international consensus exists, however, about the preferred patient\u2010reported outcomes (PROs) and their measures (PROMs) for heart transplant recipients. The purpose of this study, the first step in a mixed\u2010method investigation, was to review the PROMs developed and used in this population to identify the instruments for measuring HR\u2010QoL and adherence to immunosuppressive medications most appropriate for heart transplant patients.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>This systematic search of the literature in the PubMed database focused on the assessment of PROMs for patients after HTX. We analyzed 66 studies with cross\u2010sectional, 28 with longitudinal, and 2 with mixed\u2010methods designs, as well as 6 literature reviews.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>These 102 articles used 115 different PROMs, which we categorized as generic HR\u2010QoL instruments (n\u00a0=\u00a019), domain\u2010specific instruments (n\u00a0=\u00a071), heart disease\u2010specific instruments (n\u00a0=\u00a09), and heart transplant\u2010specific instruments (n\u00a0=\u00a016). They cover different dimensions of HR\u2010QoL and of immunosuppressive\u2010drug experience, with diverse numbers of items, types of scales, and psychometric properties.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Despite the abundance of instruments, PROMs for HTX can be improved to meet other patient expectations (i.e., by including important issues such as coping strategies, employment, social support, sexual relationships, spirituality, and beliefs), while paying attention to ease of use, reliability, validity, and the contribution of new technologies. A qualitative approach will complete our project of developing a patient\u2010centered instrument for HTX patients.<\/jats:p><\/jats:sec>","DOI":"10.1111\/ctr.14708","type":"journal-article","created":{"date-parts":[[2022,5,29]],"date-time":"2022-05-29T13:55:04Z","timestamp":1653832504000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":18,"title":["Implementation of patient\u2010reported outcome measures in a heart transplant recipient registry: First step toward a patient\u2010centered approach"],"prefix":"10.1111","volume":"36","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7383-0468","authenticated-orcid":false,"given":"Redouane","family":"Mahmoudi","sequence":"first","affiliation":[{"name":"Direction m\u00e9dicale et scientifique Agence de la biom\u00e9decine  Saint Denis La Plaine 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