{
  "abstract": "Objective To investigate how patients with sarcoma present prior to diagnosis—through a general practitioner (GP) or another healthcare professional (HCP)—and describe presenting symptoms.Design International observational cohort study.Setting Data were obtained from the longitudinal ‘QUality of life and Experiences of Sarcoma Trajectories’ (QUEST) cohort study, conducted across the Netherlands, the United Kingdom (UK), Australia and New Zealand.Results Among 572 patients, 487 (85.1%) started their diagnostic trajectory at the GP (subcohort 1) and 85 (14.9%) with another HCP (subcohort 2)—mainly medical specialists treating unrelated conditions (36/85; 42.4%). Soft tissue sarcoma patients most often reported swelling, whereas bone sarcoma patients reported unexplained pain. Notably, 31/85 (36.5%) of subcohort 2 were asymptomatic. Reasons for delaying GP visits included assuming symptoms were minor and expecting them to resolve. Patients sought care when, among others, symptoms persisted and worsened.Conclusions Most patients first consulted a GP, underlining the role of primary care in sarcoma diagnosis internationally. Due to rarity and nonspecific symptoms, faster diagnosis remains challenging, requiring improvements in both primary and specialist care.Trial registration number NCT03441906; Results.",
  "authors": [
    {
      "affiliations": [
        "Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands",
        "Medical Oncology Department, NKI-AVL - Antoni van Leeuwenhoek Hospital, Netherlands Cancer Institute, Amsterdam, The Netherlands",
        "Department of Public Health, Erasmus MC Cancer Institute, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands"
      ],
      "name": "Emily I Holthuis"
    },
    {
      "affiliations": [
        "Department of Medical Oncology, Radboud Institute of Medical Innovation, Radboud University Medical Center, Nijmegen, The Netherlands"
      ],
      "name": "Vicky L M N Soomers"
    },
    {
      "affiliations": [
        "Epidemiology of Cancer Healthcare & Outcomes (ECHO) Group, Department of Behavioural Science, Institute of Epidemiology and Health Care (IEHC), UCL, London, UK",
        "The University of Melbourne Department of General Practice and Primary Care, Carlton, Victoria, Australia"
      ],
      "name": "Meena Rafiq"
    },
    {
      "affiliations": [
        "Sarcoma Unit, Medical Oncology Department, Institute of Cancer Research, The Royal Marsden Hospital, London, UK"
      ],
      "name": "Robin L Jones"
    },
    {
      "affiliations": [
        "Sarcoma Unit, Department of Surgery, Royal Marsden Hospital NHS Trust, London, UK"
      ],
      "name": "Andrew Hayes"
    },
    {
      "affiliations": [
        "Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands",
        "Medical Oncology Department, NKI-AVL - Antoni van Leeuwenhoek Hospital, Netherlands Cancer Institute, Amsterdam, The Netherlands"
      ],
      "name": "Deborah Van De Wal"
    },
    {
      "affiliations": [
        "Department of Primary and Community Care, Radboud Institute of Medical Innovation, Radboud University Medical Center, Nijmegen, The Netherlands"
      ],
      "name": "Cas Drabbe"
    },
    {
      "affiliations": [
        "Surgery Oncology Department, University Medical Centre Groningen, Groningen, The Netherlands"
      ],
      "name": "Lukas B Been"
    },
    {
      "affiliations": [
        "Surgery Oncology Department, Radboud University Medical Center, Nijmegen, The Netherlands"
      ],
      "name": "Han Bonenkamp"
    },
    {
      "affiliations": [
        "Surgery Oncology Department, Leiden University Medical Center, Leiden, The Netherlands"
      ],
      "name": "Jos H van der Hage"
    },
    {
      "affiliations": [
        "Sarcoma Unit, The Royal Marsden NHS Foundation Trust, London, UK"
      ],
      "name": "Alexander T J Lee"
    },
    {
      "affiliations": [
        "Department of Surgical Oncology and Gastrointestinal Surgery, Erasmus MC Cancer Institute, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands"
      ],
      "name": "Cornelis Verhoef"
    },
    {
      "affiliations": [
        "Surgical Oncology Department, NKI-AVL - Antoni van Leeuwenhoek Hospital, Netherlands Cancer Institute, Amsterdam, The Netherlands"
      ],
      "name": "Winan J van Houdt"
    },
    {
      "affiliations": [
        "Weston Park Cancer Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK"
      ],
      "name": "Robin J Young"
    },
    {
      "affiliations": [
        "Department of Medical Oncology, St Andrews Place, Peter MacCallum Cancer Centre, East Melbourne, Victoria, Australia"
      ],
      "name": "Susie Bae"
    },
    {
      "affiliations": [
        "Department of Medical Oncology, Princess Alexandra Hospital, Woolloongabba, Queensland, Australia"
      ],
      "name": "Vladimir Andelkovic"
    },
    {
      "affiliations": [
        "Department of Radiation Oncology, Chris O’Brien Lifehouse, Camperdown, New South Wales, Australia",
        "Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia"
      ],
      "name": "Angela M Hong"
    },
    {
      "affiliations": [
        "Te Pūriri o Te Ora, Auckland City Hospital, Auckland, New Zealand"
      ],
      "name": "Joanna Connor"
    },
    {
      "affiliations": [
        "Dutch Sarcoma Patient Platform, Amsterdam, The Netherlands"
      ],
      "name": "Carlos Koops"
    },
    {
      "affiliations": [
        "Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands",
        "Medical Oncology Department, NKI-AVL - Antoni van Leeuwenhoek Hospital, Netherlands Cancer Institute, Amsterdam, The Netherlands"
      ],
      "name": "Winette T A van der Graaf"
    },
    {
      "affiliations": [
        "Medical Oncology Department, NKI-AVL - Antoni van Leeuwenhoek Hospital, Netherlands Cancer Institute, Amsterdam, The Netherlands",
        "Department of Public Health, Erasmus MC Cancer Institute, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands",
        "Department of Surgical Oncology and Gastrointestinal Surgery, Erasmus MC Cancer Institute, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands"
      ],
      "name": "Olga Husson"
    }
  ],
  "title": "Pre-diagnostic route reported by patients with sarcoma from the Netherlands, the UK, Australia and New Zealand: early detection challenges for general practitioners – an international observational cohort study",
  "uid": "075f4310-eb00-577e-aba1-f2c7705e5a3a"
}