{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,21]],"date-time":"2026-07-21T13:41:17Z","timestamp":1784641277824,"version":"3.55.0"},"reference-count":26,"publisher":"Bioscientifica","issue":"6","content-domain":{"domain":["erc.bioscientifica.com"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2024,4,23]]},"abstract":"<jats:p>Pheochromocytoma and paragangliomas (PPGLs) originate from the chromaffin cells of the adrenal medulla or neural crest progenitors outside the adrenal gland, respectively. The estimated annual incidence of PPGL is between 2.0 and 8.0\/million adults. Minimal data exist on the impact of PPGL from the patient\u2019s perspective. Therefore, a survey was adapted from a previously published study on gastroenteropancreatic neuroendocrine tumors to explore the voice of patients with PPGL and learn ways to improve clinical care while understanding the current gaps to direct future research. A self-reported online survey was available to patients with PPGL and those with genetic predisposition even without PPGL from June to July 2022. Survey questions captured sociodemographic and clinical characteristics, the diagnostic workup, treatment and monitoring, quality and access to care, and financial impact. Here, we report the most relevant findings on patient experience of disease burden following diagnosis. A total of 270 people responded, the majority of whom were from the USA (79%), Caucasian (88%), and female (81%). The results of this survey highlight the burden of disease on a patient\u2019s daily life, resulting in moderate to severe financial distress, increased travel time to specialized facilities resulting in loss of work and wages, and significant delays in care. Respondents reported being unheard and unacknowledged. With a median time to diagnosis just over 2 years, the physical, mental, and emotional toll are substantial. Increasing access to PPGL specialists and centers could lead to faster diagnoses and better management, which may reduce the burden on both patients and healthcare centers.<\/jats:p>","DOI":"10.1530\/erc-23-0349","type":"journal-article","created":{"date-parts":[[2024,4,23]],"date-time":"2024-04-23T08:18:29Z","timestamp":1713860309000},"update-policy":"https:\/\/doi.org\/10.1530\/crossmarkpolicy-8","source":"Crossref","is-referenced-by-count":3,"title":["Patient-reported burden associated with pheochromocytoma\/paraganglioma diagnosis"],"prefix":"10.1530","volume":"31","author":[{"given":"Katherine I","family":"Wolf","sequence":"first","affiliation":[{"name":"Department of Medicine, Division of Metabolism, Endocrinology and Diabetes, University of Michigan, Ann Arbor, Michigan, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Linda","family":"Rose-Krasnor","sequence":"additional","affiliation":[{"name":"Pheo Para Alliance and Psychology Department, Brock University, St. Catharines, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stephanie","family":"Alband","sequence":"additional","affiliation":[{"name":"Pheo Para Alliance, Alexandria, Virginia, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jacques W M","family":"Lenders","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, Radboud University Medical Centre, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8151-5107","authenticated-orcid":true,"given":"Lauren","family":"Fishbein","sequence":"additional","affiliation":[{"name":"Department of Medicine, Division of Endocrinology, Metabolism and Diabetes, and Department of Biomedical Informatics, University of Colorado School of Medicine, Aurora, Colorado, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"416","reference":[{"key":"bib1","series-title":"Journal of Human Hypertension","first-page":"187","article-title":"The incidence rate of phaeochromocytoma and Conn\u2019s syndrome in Denmark, 1977\u20131981","volume":"2","author":"Andersen","year":"1988","unstructured":"Andersen GSToftdahl DBLund JOStrandgaard S & Nielsen PE1988The incidence rate of phaeochromocytoma and Conn\u2019s syndrome in Denmark, 1977\u20131981. 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(https:\/\/doi.org\/10.1037\/hea0000993)"},{"key":"bib19","series-title":"Journal of Genetic Counseling","first-page":"872","article-title":"Genetic testing for pheochromocytoma and paraganglioma: SDHx carriers\u2019 experiences","volume":"30","author":"Martins","year":"2021","unstructured":"Martins RG & Carvalho IP2021Genetic testing for pheochromocytoma and paraganglioma: SDHx carriers\u2019 experiences. Journal of Genetic Counseling30872\u2013884. (https:\/\/doi.org\/10.1002\/jgc4.1390)"},{"key":"bib20","series-title":"Endocrine Pathology","first-page":"90","article-title":"Overview of the 2022 WHO classification of paragangliomas and pheochromocytomas","volume":"33","author":"Mete","year":"2022","unstructured":"Mete OAsa SLGill AJKimura NDe Krijger RR & Tischler A2022Overview of the 2022 WHO classification of paragangliomas and pheochromocytomas. Endocrine Pathology3390\u2013114. 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(https:\/\/doi.org\/10.3389\/fpsyg.2020.00806)"},{"key":"bib25","series-title":"Endocrine Oncology","first-page":"R65","article-title":"Pheochromocytoma and paraganglioma: germline genetics and hereditary syndromes","volume":"2","author":"Turin","year":"2022","unstructured":"Turin CGCrenshaw MM & Fishbein L2022Pheochromocytoma and paraganglioma: germline genetics and hereditary syndromes. Endocrine Oncology2R65\u2013R77. (https:\/\/doi.org\/10.1530\/EO-22-0044)"},{"key":"bib26","series-title":"Pancreas","first-page":"639","article-title":"Patient-reported experience of diagnosis, management, and burden of neuroendocrine tumors: results from a large patient survey in the United States","volume":"46","author":"Wolin","year":"2017","unstructured":"Wolin EMLeyden JGoldstein GKolarova THollander R & Warner RRP2017Patient-reported experience of diagnosis, management, and burden of neuroendocrine tumors: results from a large patient survey in the United States. Pancreas46639\u2013647. (https:\/\/doi.org\/10.1097\/MPA.0000000000000818)"}],"container-title":["Endocrine-Related Cancer"],"original-title":[],"link":[{"URL":"https:\/\/erc.bioscientifica.com\/view\/journals\/erc\/31\/6\/ERC-23-0349.xml","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/erc.bioscientifica.com\/downloadpdf\/journals\/erc\/31\/6\/ERC-23-0349.xml","content-type":"text\/html","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/erc.bioscientifica.com\/downloadpdf\/journals\/erc\/31\/6\/ERC-23-0349.xml","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,7,20]],"date-time":"2026-07-20T13:56:44Z","timestamp":1784555804000},"score":1,"resource":{"primary":{"URL":"http:\/\/journals.bioscientifica.com\/erc\/article\/25812"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,4,23]]},"references-count":26,"journal-issue":{"issue":"6"},"URL":"https:\/\/doi.org\/10.1530\/erc-23-0349","relation":{},"ISSN":["1351-0088","1479-6821"],"issn-type":[{"value":"1351-0088","type":"print"},{"value":"1479-6821","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,4,23]]}}}