{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,3]],"date-time":"2026-07-03T04:22:58Z","timestamp":1783052578989,"version":"3.54.6"},"reference-count":24,"publisher":"Wiley","issue":"20","license":[{"start":{"date-parts":[[2022,8,23]],"date-time":"2022-08-23T00:00:00Z","timestamp":1661212800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["acsjournals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Cancer"],"published-print":{"date-parts":[[2022,10,15]]},"abstract":"<jats:sec><jats:title>Background<\/jats:title><jats:p>Systemic mastocytosis (SM) is a rare clonal neoplasm driven by the <jats:italic>KIT<\/jats:italic> D816V mutation and has a broad range of debilitating symptoms. In this study, the authors evaluated SM disease perceptions and management strategies among US health care providers (HCPs).<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Hematologist\/oncologist (H\/O) HCPs and allergist\/immunologist (A\/I) HCPs who were treating four or more patients with SM completed an online, 51\u2010item TouchStone HCP Survey, which queried provider characteristics, perceptions of disease burden, and current management. Descriptive analyses by specialty and SM subtype were performed.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Of 304 HCPs contacted, 111 (37%) met eligibility criteria, including 51% A\/I specialists and 49% H\/O specialists. On average, the HCPs had 14\u2009years of practice experience and cared for 20 patients with SM. A\/I HCPs saw more patients with nonadvanced SM (78%) compared with H\/O HCPs, who saw similar proportions of patients with nonadvanced SM (54%) and advanced SM (46%). HCPs reported testing 75% of patients for the <jats:italic>KIT<\/jats:italic> D816V mutation and found an estimated prevalence of 47%. On average, HCPs estimated 8\u2009months between symptom onset and SM diagnosis. HCPs reported that 62% of patients with indolent SM felt depressed or discouraged because of symptoms. In terms of treatment goals for SM, both types of specialists prioritized symptom improvement for nonadvanced SM and improved survival for advanced SM while also prioritizing improving patient quality of life.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Both A\/I and H\/O specialists highlighted unmet needs for patients with SM. The HCPs surveyed reported a lower rate of <jats:italic>KIT<\/jats:italic> D816V mutations and a perceived shorter time between symptom onset and SM diagnosis compared with published estimates.<\/jats:p><\/jats:sec><jats:sec><jats:title>Lay summary<\/jats:title><jats:p>\n<jats:list list-type=\"bullet\">\n\n<jats:list-item><jats:p>Specialists treating systemic mastocytosis (SM) completed a 51\u2010item questionnaire about their clinical practices and perceptions of disease impact.<\/jats:p><\/jats:list-item>\n\n<jats:list-item><jats:p>The study included 111 hematology, oncology, allergy, and immunology physicians.<\/jats:p><\/jats:list-item>\n\n<jats:list-item><jats:p>Physicians reported that most patients had nonadvanced disease, yet SM symptoms significantly disrupted their patients' lives.<\/jats:p><\/jats:list-item>\n\n<jats:list-item><jats:p>Physicians estimated that SM is diagnosed within months of symptom onset, in contrast with published reports of years' long delays reported by patients with SM.<\/jats:p><\/jats:list-item>\n\n<jats:list-item><jats:p>This study identified unmet needs that can inform educational and patient management priorities in this rare disease.<\/jats:p><\/jats:list-item>\n<\/jats:list>\n<\/jats:p><\/jats:sec>","DOI":"10.1002\/cncr.34421","type":"journal-article","created":{"date-parts":[[2022,8,23]],"date-time":"2022-08-23T03:03:17Z","timestamp":1661223797000},"page":"3700-3708","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["Perceptions of patient disease burden and management approaches in systemic mastocytosis: Results of the <scp>TouchStone H<\/scp>ealthcare <scp>P<\/scp>rovider <scp>S<\/scp>urvey"],"prefix":"10.1002","volume":"128","author":[{"given":"Ruben A.","family":"Mesa","sequence":"first","affiliation":[{"name":"Mays Cancer Center at The University of Texas Health San Antonio MD Anderson Cancer Center  San Antonio Texas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erin M.","family":"Sullivan","sequence":"additional","affiliation":[{"name":"Blueprint Medicines Corporation  Cambridge Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Dubinski","sequence":"additional","affiliation":[{"name":"Blueprint Medicines Corporation  Cambridge Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brittany","family":"Carroll","sequence":"additional","affiliation":[{"name":"Blueprint Medicines Corporation  Cambridge Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Valerie M.","family":"Slee","sequence":"additional","affiliation":[{"name":"The Mast Cell Disease Society, Inc.  Sterling Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan V.","family":"Jennings","sequence":"additional","affiliation":[{"name":"The Mast Cell Disease Society, Inc.  Sterling Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Celeste C.","family":"Finnerty","sequence":"additional","affiliation":[{"name":"The Mast Cell Disease Society, Inc.  Sterling Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Linda S.","family":"Bohannon","sequence":"additional","affiliation":[{"name":"Cancer Support Community  Washington District of Columbia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan D.","family":"Mathias","sequence":"additional","affiliation":[{"name":"Health Outcomes Solutions  Winter Park Florida USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8659-1336","authenticated-orcid":false,"given":"Betsy J.","family":"Lahue","sequence":"additional","affiliation":[{"name":"Alkemi LLC  Manchester Center Vermont USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mariana C.","family":"Castells","sequence":"additional","affiliation":[{"name":"Division of Allergy and Clinical Immunology Brigham and Women's Hospital  Boston Massachusetts 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