Useful links

Run by Professor Bob Cummins of Deakin University, the centre takes a broad interest in quality of life research that extends beyond the confines of HRQol

European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group
The EORTC website offers the opportunity to download their widely-used questionnaires together with manuals and guidelines and updates on questionnaires still under development. There are also opportunities to read EORTC newsletters and to get involved in the EORTC research community.

Functional Assessment of Chronic Illness Therapy (FACIT) 

The FACIT website offers their widely-used and extensive suite of HRQoL questionnaires and symptom indices.  There is also an opportunity to buy translations of questionnaires and information on scoring and interpretation of data.

The International Society for Quality of Life Research (ISOQOL) 
ISOQOL is the peak body for HRQoL researchers. The website offers links, news on developments in the field, information about ISOQOL’s annual conference and a number of special interest groups. Members also receive a reduced subscription to ISOQOL’s journal, Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation.

 

The Mapi Research Institute/Trust
The Mapi Research Trust is a leading authority on patient-reported outcome measures (PROMs). The Trust’s website includes instrument pages and useful links and access to past issues of its newsletter. The Trust distributes a number of questionnaires and runs the leading online database of PROMs, ProQolid (see databases below). On request, staff at the Trust’s Information Resources Centre will search its library for information about specific instruments or conduct literature reviews. The Institute has particular expertise in cultural adaptation, translation and linguistic validation of questionnaires.


Patient-reported Health Instruments
This Oxford University-based site offers general information on patient-reported health outcomes (e.g., choosing a measure), a searchable bibliographic database and systematic reviews of a number of questionnaires.

Quality of Life in Oncology Resource Centre

This resource centre provides research articles, guidelines, review articles, opinion pieces and video interviews with key opinion leaders about quality of life for cancer patients. 

 

HRQoL questionnaire websites

 

Free access questionnaires 

EORTC
(for electronic versions of the EORTC QLQ-C30 and selected modules, see http://www.ql-recorder.com)
FACIT 

Other cancer- and treatment-specific HRQoL measures

 

General HRQoL measures

 

Paediatric HRQoL measures

 

Palliative care / end of life measures

 

Quality of life measures (i.e., not restricted to HRQoL)

 

Utility HRQoL measures

 

Adjustment and coping measures

 

Pay-to-use questionnaires

 

Databases/collections of HRQoL questionnaires

Many other measures are available via online databases. Databases vary in what they offer for free or by subscription in terms of access to the instruments themselves and/or related information such as guidelines on scoring and interpretation.

 

PROQOLID
Mapi Research Trust, PROQOLID is the largest database of HRQoL and other patient-reported outcome measures available online. As of December 2007, a search on PROQOLID for ‘quality of life’ instruments returned 354 measures; ‘quality of life’ AND ‘neoplasms’, 43.

 

Information available for free from PROQOLID includes a summary of each questionnaire’s author, mode of administration, number of items, objectives, recall period, existence or otherwise of a database of normative scores, and the populations it has been designed for, original language and list of translations. A sample of the questionnaire itself (and sometimes scoring instructions), information about conditions of use, HRQoL dimensions covered, age range suitability, response options, time needed to complete, availability of an overall score, methodology of development, validity and reliability, and key references are available by annual subscription.

 

Behavioural Measures Core
Run as a resource for the US University Hospital Health System, this database is a free source of information on behavioural measures commonly used in cancer research. Where copyright permits, BMC provides a sample of each questionnaire as well as information relating to authorship and publishing, the front page of key references (including abstract), and summary of the questionnaire’s purpose, response format and subscales.

 

Other online databases or collections of HRQoL measures:

American Academy of Allergy, Asthma and Immunology 
Provides key references and web links to questionnaires that have been used to measure HRQoL in people with AA&I. Includes some generic measures as well as disease-specific.

 

American Thoracic Society
Provides comprehensive information on measures used to assess HRQoL in people with thoracic diseases including lung cancer. Information includes cost and availability, item content, psychometric properties and references.

Australian Centre on Quality of Life
Provides brief information on the purpose and scaling properties of a large number of questionnaires, including some cancer-specific.

Beckman Research Institute
Provides brief introduction to and links to websites or review samples of a range of HRQOL and symptom measures used in cancer, including the City of Hope’s own suite of HRQoL measures.

Derogatis Psychological Test Site

Provides a description of the content and psychometric properties of a number of Derogatis instruments, including the Psychological Adjustment to Illness Scale (PAIS).

Links to sample copies of a range of pain and palliative care assessment and research tools.


International Society for Quality of Life Studies
 

An online database of quality of life measures (not restricted to HRQoL) by subscription only.

 

Mapi Research Institute/Trust

Provides sample copies and opportunity to register for use of all instruments distributed by the Trust, including the Hospital Anxiety and Depression Scale (HADS), General Health Questionnaire (GHQ) and Patient Assessment of Constipation Quality of Life Questionnaire (PAC-QOL).

 

The Medical Outcomes Trust Provides summary information and order forms for a number of instruments, including the Sickness Illness Profile (SIP).

Offers decision-logic software and related database for pharmaceutical companies to select HRQoL measures for use in clinical and pharmacoeconomic research.

 

Patient-reported Health Instruments  

Provides links to websites for a number of measures including some cancer-specific.

 

Psycho-oncology UK

Provides information on resources and tools for use in cancer, including links to pdfs of some questionnaires. 

 

http://www.qolpro.org/

Run by the USA's Mayo Clinic, this website offers electronic copies of a number of widely used questionnaires, as well as HRQoL-related presentations by experts in the field. Login to the site is as follows: ID - form_banker; Password - iloveforms'08


SeaQoL instruments

Includes summary information and order forms for a small collection of instruments, none of which are cancer-specific.

 

ANZ psycho-oncology sites

The Centre for Health Research and Psycho-oncology

CHeRP is a behavioural research group established in 1988 with funding from the Cancer Council NSW  and is based within the Faculty of Health at the University of Newcastle. CHeRP's research focuses on primary and secondary prevention of cancer, behavioural aspects of the consequences of cancer, and the care of cancer patients.

Medical Psychology Research Unit
, The University of Sydney

Co-directed by PoCoG's Chair, Prof Phyllis Butow, the MPRU has an international reputation in psycho-oncology research, and in particular doctor-patient communication in the oncology and palliative care setting. The MPRU is a cross-disciplinary, cross-faculty research group, and includes staff and students from psychology, medicine, public health and nursing backgrounds.

 

Peter MacCallum Cancer Research Centre

Peter Mac houses the largest cancer research group in Australia. Its research programme includes a supportive care component, focusing on the development of world’s best practice in pain management, provision of information on cancer, quality of life, and peer support.

 

ANZ cancer clinical trials related sites

Australian New Zealand Clinical Trials Registry

The ANZCTR is is an on-line, searchable register of clinical trials being undertaken in Australia and New Zealand.

 

Clinical Oncological Society of Australia

The peak national body representing health professionals whose main work is cancer control. COSA's website includes details of and links to cancer professional groups and Australasian cancer cooperative trials groups

 

National Health and Medical Research Council Clinical Trials Centre

The co-ordinating centre for trials conducted by many of the national co-operative trials groups, the CTC is a centre for excellence in conducting clinical trials. The CTC offers courses in the design, conduct, analysis and evaluation of clinical trials. Staff at the Centre also work in a consultancy capacity.

Other websites

Cancer Australia

A national government agency, Cancer Australia provides funding to support research as well as resources for consumers and health care professionals. 


Cancer Institute NSW Standard Cancer Treatments

Offers up-to-date information on chemotherapy protocols of choice for each cancer type, including evidence for effectiveness, cost, drug dose calculation and adverse effects.

CareSearch

CareSearch has been funded by the Australian Government to improve the evidence available to palliative care clinical practitioners, researchers and educators nationally. CareSearch offers a database that covers palliative care related journals and abstracts not included in the major electronic literature databases. It also provides information on palliative care research occurring within Australia information and resources for patients, carers/family members and friends; models of service provision and outcome measures used; and a Research Data Management System.

 

HealthInsite

HealthInsite is an Australian Government website offering information on a range of health conditions including cancer. The website offers information about cancer statistics, support services and resources, as well as links to Cochrane reviews relevant to treatments for each cancer type.

 

National Cancer Institute

A US website offering authoritative and up-to-date information on cancer and its treatment for health care professionals and patients.

 

http://www.psycho-oncology.info/

A UK psycho-oncology information and help website with resources for organisations, health professionals, patients and families relating to psychological aspects of cancer care.

 


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