The route to diagnosis of sarcoma patients: Results from an interview study in the Netherlands and the United Kingdom.

Introduction Sarcomas are rare tumours. Early diagnosis is challenging, but important for local control and potentially survival and quality of life(QoL). We investigated (1)the route to diagnosis (RtD) experienced by sarcoma patients, including factors contributing to the length of the RtD from patients' perspective; (2)the impact of the RtD on QoL and care satisfaction; and (3)differences in aims 1-2 between English and Dutch patients. Methods Fifteen sarcoma patients from The Royal Marsden Hospital, United Kingdom, and Radboud University Medical Centre, The Netherlands, were interviewed, ex... Mehr ...

Verfasser: Vicky L M N Soomers
Winette T A van der Graaf
Shane Zaidi
Suzanne E J Kaal
Andrew J Hayes
Bart H W B Schreuder
Robin L Jones
Ingrid M E Desar
Olga Husson
Dokumenttyp: Artikel
Erscheinungsdatum: 2020
Reihe/Periodikum: PLoS ONE, Vol 15, Iss 12, p e0243439 (2020)
Verlag/Hrsg.: Public Library of Science (PLoS)
Schlagwörter: Medicine / R / Science / Q
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-28757418
Datenquelle: BASE; Originalkatalog
Powered By: BASE
Link(s) : https://doi.org/10.1371/journal.pone.0243439

Introduction Sarcomas are rare tumours. Early diagnosis is challenging, but important for local control and potentially survival and quality of life(QoL). We investigated (1)the route to diagnosis (RtD) experienced by sarcoma patients, including factors contributing to the length of the RtD from patients' perspective; (2)the impact of the RtD on QoL and care satisfaction; and (3)differences in aims 1-2 between English and Dutch patients. Methods Fifteen sarcoma patients from The Royal Marsden Hospital, United Kingdom, and Radboud University Medical Centre, The Netherlands, were interviewed, exploring RtD experiences. Interviews were analysed according to qualitative content analysis. Results The main themes were: patient interval, diagnostic interval, reflection on the RtD and recommendations for improvement. Patient interval was long if symptoms were attributed as benign, did not interfere with daily life or were expected to cease. An incorrect working diagnosis, ineffective process of additional investigations, long referral times and lack of a lead clinician lengthened the diagnostic interval. Long waiting times, false reassurance and inadequate information provision led to dissatisfaction and a high emotional burden. Factors for improvement included increasing awareness of patients and healthcare providers, empowering patients, and having a lead clinician. Conclusion The RtD of sarcoma patients is complex. Increasing awareness of patients and healthcare providers may contribute to shorten the RtD.