Breast cancer is the most common cancer among women worldwide and is the second leading cause of cancer death today. Approximately 1 million women are diagnosed with breast cancer each year. However, incidence and mortality rates vary widely in different countries. With advances in the treatment of women with breast cancer, including the combined use of surgical intervention, radiation therapy and chemotherapy, cancer survival rates are now above 50%. However, many survivors of breast cancer will experience physical and psychological sequelae that affect their everyday lives. There are a number of outcome measures which can be used to assess impairment or limitations in selected aspects of functioning (e.g. physical functioning, body image, psychosocial adjustment to illness). However, no systematic framework that covers the spectrum of symptoms and limitations in functioning of women with breast cancer had previously been established. To tackle this issue, the ICF Research Branch and the World Health Organisation (WHO) with the scientific support of Ludwig-Maximilian University (Germany), Braeside Hospital (Australia), New York University School of Medicine (USA), University of Vienna (Austria) and Jefferson Medical College at Thomas Jefferson University (USA), initiated a project to develop internationally-accepted and evidence-based ICF Core Sets for breast cancer. This project was part of a larger project examining 12 chronic conditions with a high burden of disease.

The preparatory phase included a systematic literature review, a Delphi exercise and an empirical data collection using the ICF checklist:

• The systematic literature review was performed to identify and compare the concepts contained in outcome measures of randomized, controlled clinical trials published from 1991-2000 involving women with breast cancer.
• The international expert survey (via email) using the Delphi technique was conducted with 22 health professionals, experts on the treatment of women with breast cancer, to identify the set of domains that best describe the prototypical spectrum of problems in functioning and health in women with breast cancer from the of health professional perspective.
• The multicentre cross-sectional study using the ICF checklist with a convenient sample of 108 patients undergoing inpatient or outpatient rehabilitation was performed to identify the common problems experienced by women with breast cancer.

An international ICF consensus conference took place from 30 May - 2 June 2003 at a quiet monastery situated in a pleasant landscape far from any city and distractions. The aim of the conference was to establish the Comprehensive and Brief ICF Core Sets for patients with breast cancer. Nineteen experts (physiatrists, physicians with a specialty in internal medicine, radiologist, physiotherapists, occupational therapists, psychologist, epidemiologist, nurse) from 5 different countries decided which ICF categories are to be included in the ICF Core Sets for breast cancer following a formal, decision-making and consensus process which integrated the results from the 3 preparatory studies.

80 ICF categories were selected for inclusion in the Comprehensive ICF Core for breast cancer. These categories can be taken into account when conducting a comprehensive, multidisciplinary assessment. Out of the 80 Comprehensive ICF Core Set categories, 40 ICF categories were selected as categories for the Brief ICF Core for breast cancer. The Brief ICF Core Set can be used in assessing patients participating in a clinical study on breast cancer.

For more information, feel free to contact the ICF Research Branch (melissa.selb@paranet.ch).

• Comprehensive & Brief ICF Core Sets for breast cancer (download PDF)