{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,5]],"date-time":"2026-08-05T04:18:51Z","timestamp":1785903531556,"version":"3.56.0"},"reference-count":16,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2020,11,9]],"date-time":"2020-11-09T00:00:00Z","timestamp":1604880000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2020,11,9]],"date-time":"2020-11-09T00:00:00Z","timestamp":1604880000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100008897","name":"Janssen Pharmaceuticals","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100008897","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J Patient Rep Outcomes"],"published-print":{"date-parts":[[2020,12]]},"abstract":"<jats:title>Abstract<\/jats:title>\n              <jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>Smoldering multiple myeloma (SMM) is an early form of multiple myeloma (MM). SMM is typically considered asymptomatic, and research on how it affects health-related quality of life (HRQoL) is limited. This study assessed the symptoms and HRQoL of patients with SMM and those who progressed from SMM to MM and evaluated the content validity of two patient-reported outcome instruments (EORTC QLQ-C30 and nine items from the EORTC QLQ-MY20) for use in SMM clinical trials. To address these objectives, concept elicitation and cognitive interviews were conducted with SMM patients and recently diagnosed MM patients.<\/jats:p>\n              <\/jats:sec>\n              <jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Fifteen adult SMM and six adult MM participants with a prior SMM diagnosis were interviewed. On average, SMM study participants were 61\u2009years old (46.0\u201378.0), 11 (73%) were female, and diagnosed 2.6 (\u00b12.0) years ago. Each participant had experienced at least one symptom, most commonly tiredness\/fatigue, weakness, and pain. The most common HRQoL impacts were emotional and physical. SMM study participants demonstrated good understanding of both the EORTC QLQ-C30 and EORTC QLQ-MY20 subscales and found them relevant to their SMM health state. The average age of MM participants was 53\u2009years old (39.0\u201362.0); 5 (83%) were female and diagnosed 1.9\u2009years ago (\u00b12.1). MM participants most commonly reported tiredness, weakness, constipation, shortness of breath, and dry mouth as occurring when they progressed from SMM to MM.<\/jats:p>\n              <\/jats:sec>\n              <jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>Although previously described as asymptomatic, these SMM participants reported experiencing symptoms that affected their lives. Additionally, the EORTC subscales measured symptoms SMM patients experienced. The participants with MM reported that the symptom burden and HRQoL impacts increased when diagnosed with MM. These findings suggest the need for increased surveillance of symptoms within the SMM population and further suggest that the EORTC subscales can be used to assess symptoms and impacts in both the SMM and MM populations.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s41687-020-00253-2","type":"journal-article","created":{"date-parts":[[2020,11,9]],"date-time":"2020-11-09T13:06:20Z","timestamp":1604927180000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":10,"title":["Symptom burden and health-related quality of life impacts of smoldering multiple myeloma: the patient perspective"],"prefix":"10.1186","volume":"4","author":[{"given":"Milenka","family":"Jean-Baptiste","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katharine S.","family":"Gries","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"William R.","family":"Lenderking","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John","family":"Fastenau","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2020,11,9]]},"reference":[{"issue":"5","key":"253_CR1","doi-asserted-by":"publisher","first-page":"365","DOI":"10.1093\/jnci\/85.5.365","volume":"85","author":"NK Aaronson","year":"1993","unstructured":"Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., et al. (1993). The European Organization for Research and Treatment of cancer QLQ-C30: A quality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute, 85(5), 365\u2013376. https:\/\/doi.org\/10.1093\/jnci\/85.5.365.","journal-title":"Journal of the National Cancer Institute"},{"key":"253_CR2","doi-asserted-by":"publisher","first-page":"21","DOI":"10.2147\/BLCTT.S136447","volume":"8","author":"A Blum","year":"2018","unstructured":"Blum, A., Bazou, D., & O'Gorman, P. (2018). Smoldering multiple myeloma: Prevalence and current evidence guiding treatment decisions. 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An international field study of the reliability and validity of a disease-specific questionnaire module (the QLQ-MY20) in assessing the quality of life of patients with multiple myeloma. European Journal of Cancer, 43(11), 1670\u20131678. https:\/\/doi.org\/10.1016\/j.ejca.2007.04.022.","journal-title":"European Journal of Cancer"},{"issue":"3","key":"253_CR5","doi-asserted-by":"publisher","first-page":"348","DOI":"10.1016\/j.soncn.2017.05.009","volume":"33","author":"S Kurtin","year":"2017","unstructured":"Kurtin, S. (2017). Living with multiple myeloma: A continuum-based approach to cancer survivorship. Seminars in Oncology Nursing, 33(3), 348\u2013361. https:\/\/doi.org\/10.1016\/j.soncn.2017.05.009.","journal-title":"Seminars in Oncology Nursing"},{"issue":"25","key":"253_CR6","doi-asserted-by":"publisher","first-page":"2582","DOI":"10.1056\/NEJMoa070389","volume":"356","author":"RA Kyle","year":"2007","unstructured":"Kyle, R. A., Remstein, E. D., Therneau, T. M., Dispenzieri, A., Kurtin, P. J., Hodnefield, J. M., \u2026 Rajkumar, S. V. (2007). Clinical course and prognosis of smoldering (asymptomatic) multiple myeloma. The New England Journal of Medicine, 356(25), 2582\u20132590. https:\/\/doi.org\/10.1056\/NEJMoa070389.","journal-title":"The New England Journal of Medicine"},{"issue":"21","key":"253_CR7","doi-asserted-by":"publisher","first-page":"3045","DOI":"10.1182\/bloodadvances.2018021220","volume":"2","author":"MV Mateos","year":"2018","unstructured":"Mateos, M. V., & Gonzalez-Calle, V. (2018). Timing of treatment of smoldering myeloma: Early treatment. Blood Advances, 2(21), 3045\u20133049. https:\/\/doi.org\/10.1182\/bloodadvances.2018021220.","journal-title":"Blood Advances"},{"key":"253_CR8","unstructured":"Mayo Clinic. (2019). Multiple myeloma. 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Informed consent was obtained from all individual participants included in the study.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"95"}}