Assessing quality of life and experiences of diagnostic trajectories of sarcoma patients: The QUEST study protocol

Abstract

Abstract 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. Legal entity responsible for the study Winette van der Graaf. Funding Radboudumc PROFILES registry. Disclosure All authors have declared no conflicts of interest.