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

• Published in: PloS one Vol. 15; no. 12; p. e0243439
• Main Authors: Soomers, Vicky L M N, van der Graaf, Winette T A, Zaidi, Shane, Kaal, Suzanne E J, Hayes, Andrew J, Schreuder, Bart H W B, Jones, Robin L, Desar, Ingrid M E, Husson, Olga
• Format: Journal Article
• Language: English
• Published: United States Public Library of Science 07.12.2020; Public Library of Science (PLoS)
• Subjects: Adult; Biology and Life Sciences; Cancer; Cancer patients; Content analysis; Decision Making; Diagnosis; Diagnostic systems; Ewings sarcoma; Female; Health care; Health care facilities; Hospitals; Humans; Interviews; Interviews as Topic - methods; Lead; Male; Medical diagnosis; Medical examination; Medical referrals; Medical research; Medicine and Health Sciences; Middle Aged; Netherlands - epidemiology; Patient Satisfaction; Patients; People and Places; Qualitative analysis; Quality of Life; Questionnaires; Sarcoma; Sarcoma - diagnosis; Sarcoma - epidemiology; Sarcoma - pathology; Soft Tissue Neoplasms - diagnosis; Soft Tissue Neoplasms - epidemiology; Soft Tissue Neoplasms - pathology; Surveys and Questionnaires; Tumors; United Kingdom - epidemiology; United Kingdom; Netherlands; United Kingdom > UK
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0243439

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. 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. 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. The RtD of sarcoma patients is complex. Increasing awareness of patients and healthcare providers may contribute to shorten the RtD.