Assessing Health-related Quality of Life in Sarcoma Patients

Summary

Although the clinical effectiveness of sarcoma treatment has improved, long-lasting and cumulative treatment side-effects may often detract from the overall marginal advantage. Information only on survival is insufficient to determine the net clinical benefit of a treatment. It is important to assess treatment effectiveness both in terms of objective outcomes (e.g., response, recurrence and survival) and in terms of subjective patient reported outcomes (PROs), objective functional outcomes including health-related quality of life (HRQoL).

Previous studies have predominantly used generic HRQoL instruments, which cover some relevant issues but do not capture all the unique experiences of patients with sarcoma, and thus lack content validity. A sarcoma-specific questionnaire should be able to detect, with more sensitivity, side-effects, symptoms and problems with function that are particularly relevant to patients with sarcoma. To date , there is no specific sarcoma HRQoL instrument available; and, given the heterogeneity of the disease in terms of subtype, location, age and treatment, the development of such an instrument may be challenging.

The aim of this collaborative project between the EORTC Quality of Life Group (QLG) and the EORTC Soft Tissue and Bone Sarcoma Group (STBSG) is to raise the standard of HRQoL measurement in patients with sarcoma. An important question remains to be answered: Is it possible to develop one PROs questionnaire covering HRQoL issues that are relevant to all adult patients with sarcoma, or are the HRQoL issues related to the different localization / treatment sufficiently different to warrant the creation of separate item lists selected from the EORTC QLG Item Library?

Conditions

• Sarcoma

Sponsors & Collaborators

• Radboud University Medical Center

  collaborator OTHER

• Leiden University Medical Center

  collaborator OTHER

• Centre Leon Berard

  collaborator OTHER

• University Hospital Carl Gustav Carus

  collaborator OTHER

• Heidelberg University

  collaborator OTHER

• Johannes Gutenberg University Mainz

  collaborator OTHER

• Fondazione IRCCS Istituto Nazionale dei Tumori, Milano

  collaborator OTHER

• National Cancer Institute, Naples

  collaborator OTHER

• Maria Sklodowska-Curie National Research Institute of Oncology

  collaborator OTHER

• Hospital San Carlos, Madrid

  collaborator OTHER

• Royal Marsden NHS Foundation Trust

  collaborator OTHER

• Beatson West of Scotland Cancer Centre

  collaborator UNKNOWN

• University Hospital Southampton NHS Foundation Trust

  collaborator OTHER

• Royal National Orthopaedic Hospital NHS Trust

  collaborator OTHER

• Bank of Cyprus Oncology Centre

  collaborator OTHER

• Institut Català d'Oncologia

  collaborator OTHER

• University of Adelaide

  collaborator OTHER

• King Hussein Cancer Center

  collaborator OTHER

• Oslo University Hospital

  collaborator OTHER

• Erasmus Medical Center

  collaborator OTHER

• University Medical Center Groningen

  collaborator OTHER

• Centre Oscar Lambret

  collaborator OTHER

• Aretaieio Hospital

  collaborator OTHER

• Hospital Universitario Fundación Jiménez Díaz

  collaborator OTHER

• The Christie NHS Foundation Trust

  collaborator OTHER

• Ain Shams University

  collaborator OTHER

• Prince of Wales Hospital, Shatin, Hong Kong

  collaborator OTHER

• Sheba Medical Center

  collaborator OTHER_GOV

• The Netherlands Cancer Institute

  lead OTHER

Principal Investigators

• Olga Husson, PhD · The Netherlands Cancer Institute

• Winette van der Graaf, PhD, MD · The Netherlands Cancer Institute

Eligibility

Min Age

18 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2019-05-01

Primary Completion

2024-08-30

Completion

2024-09-01

Countries

• Germany
• Jordan

Study Locations