Abstract 5568
Background
Sarcoma patients, like many other patients with rare diseases, often experience a long diagnostic trajectory, which may negatively affect their outcome in many ways. So far, research on diagnostic intervals has been retrospective. Prospective studies with large patient numbers comparing diagnostic intervals in different health care systems have not been performed. Moreover, next to survival, health-related quality of life (HRQoL) and patient satisfaction can be affected by experiencing diagnostic delay. Currently, no data are available on how the diagnostic trajectory impacts patient-reported outcomes among sarcoma patients.
Trial design
A longitudinal cohort study, QUEST, will be conducted among newly diagnosed sarcoma patients 18 years and older in one of the participating study centers in The Netherlands (five centers) or United Kingdom (3 centers). Patients will be invited before start of treatment and asked to complete questionnaires on the diagnostic pathway, risk factors (demographic, geographic, tumour characteristics etc) and patient-reported outcomes (HRQoL, social functioning, psychological distress, care satisfaction) at diagnosis and 3, 6, 12 and 24 months later. Data collection will be done within PROFILES, an established international registry for cancer patient reported outcomes. Clinical data, including vital status and tumour characteristics, will be collected from patients’ records. We aim to include 530 patients within two years, recruitment started 01-02-2018, and up till now 300patients completed baseline questionnaires (219 in NL, response rate 60%; 66 in UK, response rate 45%). Descriptive statistics will be used to quantify diagnostic intervals. The association between diagnostic interval and HRQoL, stage at diagnosis, primary treatment and survival will be explored.
Clinical trial identification
Protocol Record 2017-3881.
Editorial acknowledgement
Legal entity responsible for the study
Winette van der Graaf.
Funding
Radboudumc PROFILES registry.
Disclosure
All authors have declared no conflicts of interest.
Resources from the same session
1701 - Immunogenicity and optimal timing of 13-valent pneumococcal conjugate vaccination during adjuvant chemotherapy in gastric and colorectal cancer : A randomized controlled trial
Presenter: Wonyoung Choi
Session: Poster Display session 1
Resources:
Abstract
3158 - Tobacco Retail Access and Tobacco Cessation Among Head and Neck Cancer (HNC) Survivors
Presenter: Lawson Eng
Session: Poster Display session 1
Resources:
Abstract
5511 - ASSERT: A Prospective, Observational Study Measuring Sodium Improvement and Outcomes in Patients Treated for Moderate to Severe Hyponatremia Secondary to Syndrome of Inappropriate Antidiuretic Hormone secretion (SIADH) in Italy (Lung Cancer Cohort)
Presenter: Rossana Berardi
Session: Poster Display session 1
Resources:
Abstract
3821 - Efficacy and safety of controlled ovarian stimulation with or without letrozole co-administration for fertility preservation: A systematic review and meta-analysis.
Presenter: Benedetta Bonardi
Session: Poster Display session 1
Resources:
Abstract
2168 - Child development at 6 years after maternal cancer diagnosis and treatment during pregnancy
Presenter: Tineke Vandenbroucke
Session: Poster Display session 1
Resources:
Abstract
5855 - Update of the registry of young women with cancer by the International Network of Cancer, Infertility and Pregnancy
Presenter: Charlotte Maggen
Session: Poster Display session 1
Resources:
Abstract
5156 - Erectile dysfunction in patients with metastatic renal cell carcinoma
Presenter: Ilya Tsimafeyeu
Session: Poster Display session 1
Resources:
Abstract
4992 - Exercise level, interest and preferences in cancer patients.
Presenter: Alice Avancini
Session: Poster Display session 1
Resources:
Abstract
3427 - Filling the Gaps in Informed Consent for Advanced Cancer Patients considering Phase 1 Oncology Trials - an in-depth Qualitative Study of Key Stakeholders at a large United Kingdom Phase 1 unit
Presenter: Abhijit Pal
Session: Poster Display session 1
Resources:
Abstract
3537 - Breast Cancer Patients’ Quality of Life: Real World Data
Presenter: Thanos Kosmidis
Session: Poster Display session 1
Resources:
Abstract