External resources

This page includes a range of external resources. To see our resources, go to CQUEST resources. To keep up to date with new resources, follow us on Twitter @UTS_CQUEST and subscribe to our newsletter by email to cquest@uts.edu.au.

PROTEUS

Proteus tools and resources for using pros in clinical trials

The PROTEUS Consortium provides a curated collection of core methodologic tools to inform the use of patient-reported outcomes (PROs) in clinical trials and clinical practice. Resources and checklists are provided to navigate the PRO clinical trial processes of:

Writing grants
Developing protocols (SPIRIT-PRO)
Selecting PRO measures (ISOQOL)
Analysing data (SISAQOL)
Reporting data (CONSORT-PRO)
Displaying results
Applying findings

COSMIN

Consensus based standard for the selection of heAlth measurement insturments (cOSMIN)

COSMIN provides practical tools to guide the selection of high quality PROMs both in research and in clinical practice. These include:

COSMIN taxonomy of measurement properties
COSMIN database of systematic reviews
Checklists for assessing study qualities
Search filters for relevant studies
Guidelines for developing a Core Outcome Set
Guidlines for conducting systematic reviews (under development is a PRISMA checklist for use in PRO-related systematic reviews)

PRO-CTCAE®

Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE)

PRO-CTCAE is a patient-reported outcome measurement (PROM) system developed by the National Cancer Istitute to capture symptomatic adverse events in patients in cancer clinical trials.

Sydney Quality of Life Office

PATIENT REPORTED OUTCOME COMPLETION AND MISSING DATA (CoMiDA) FORM (WD, 311KB)

The PRO CoMiDa Form is a data management tool, designed to provide standardised documentation of the completion or reasons for non-completion of PRO assessments by patients in a clinical trial/study.

Organisations with a strong emphasis on PROMs

Clinical oncology group of australia (cOSA) pro working group

The COSA PRO Working Group provides a coordinated and consistent approach for the communication and advocacy around the benefits of PRO assessment in clinical cancer care in Australia.

euroqol

The EuroQol Group developed the EQ-5D, a standardised measure that generates a single index value for health status with considerable potential for use in health care evaluation.

international society for quality of life research (ISOqol)

ISOQOL is a global community that aims to advance the science of quality of life and related patient-centered outcomes in health research, care and policy.

multinational association of supportive care in cancer (mascc)

MASCC is dedicated to the practice, education and research of improving supportive care in cancer - from diagnosis through to survival or end-or-life care

patient-centred outcomes research institute (pcori)

The PCORI is the leading funder of patient-centred comparative clinical effectiveness research, and seeks to empower patients and others with actionable information about their health and healthcare choices.

the professional society for health economics and outcomes research (ispor)

The ISPOR is a professional society which aims to promote health economics and outcomes research to improve decision making for health globally.

Most widely-used suites of cancer-specific PROMs

EUROPEAN ORGANISATION FOR RESEARCH AND TREATMENT OF CANCER (eoRTC) Quality of life group

The EORTC Quality of Life Group develops and refines questionnaires to assess health-related quality of life of patients for use in oncology clinical trials, in other well-designed research studies and in clinical practice.

Functional asessment of chronic illness therapy (fACIT)

FACIT is an organisation grounded in rigorous health outcomes measurement methods with the aim of improving global health outcomes research.