Patient Survey ICHOM

If you have ever been diagnosed with breast cancer, ICHOM wants to hear from you!

The Dr. Susan Love Foundation for Breast Cancer Research would like to ask for your support of a project by the International Consortium for Health Outcomes Measurement (ICHOM). ICHOM is a nonprofit organization that brings together global teams of physician leaders, researchers, and advocates with the purpose to transform health care systems worldwide by measuring and reporting on outcomes that really matter to patients.

ICHOM – more focus on patient-centered outcomes

ICHOM believes that there is too much of a focus on traditional outcomes in our current health care system. Doctors think about breast cancer in terms of tumor positive margins or lymph node status. But what about the concerns and needs of patients? Some of you might ask – When will I be able to work again or walk outside? How long can I expect hot flashes and night sweats to last? Can my life be normal again after my treatment? Most of the time, these questions on the real outcomes that matter to patients remain unanswered.

More information can also be found on:

Survey – your input is needed!

Because ICHOM focuses on outcomes that matter to patients, they are interested to hear your views on the outcomes that mattered most to you! They have developed a survey for you to vote on a list of outcomes to better understand if the list represents what patients really think.

The survey will take you -10 minutes maximum and will be accessible via the link below. Please note that your responses will remain anonymous and no identifying information will be collected.

The Survey has ended.

Thank you so much for completing the survey and for your time and input. The information you provide will be used to improve the quality of life of women after treatment for breast cancer!

The ICHOM Breast Cancer Working Group Members:

  • Christobel Saunders, Surgical Oncologist, University of Western Australia, Australia (Project Leader)
  • Kimberly Allison, Pathologist and patient representative, Stanford University School of Medicine, USA
  • Karen Benn, patient representative, Europa Donna, Italy
  • John Browne, Epidemiologist and health services researcher, University College Cork, Ireland
  • Rodney Cooter, Plastic Surgeon, Monash University, Australia
  • Geoff Delaney, Radiation Oncologist, South Western Sydney Local Health District, Australia
  • Francois Duhoux, Medical Oncologist, Intitut Roi Albert II, Belgium
  • Lesley Fallowfield, Psycho-oncologist, University of Sussex, UK
  • Patricia Ganz, Medical Oncologist, UCLA Schools of Medicine & Public Health, USA
  • Pattricia Hancock, patient representative, Breast Cancer Network Australia, Australia
  • Reshma Jagsi, Radiation Oncologist, University of Michigan, USA
  • Felicia Knaul, patient representative, Cancer de Mama, Mexico
  • Anne Knip, patient representative, Breast Cancer Association, Netherlands
  • Linetta Koppert, Surgical Oncologist, Erasmus MC Cancer Institute, Netherlands
  • Henry Kuerer, Surgical Oncologist, MD Anderson Cancer Network, USA
  • Sarah McLaughin, Surgical Oncologist, Mayo Clinic Jacksonville, USA
  • Marc Mureau, Plastic Surgeon, Erasmus MC Cancer Institute, Netherlands
  • Wee Loon Ong, Radiation Oncologist, Peter MacCallum Cancer Centre, Australia
  • Ann Partridge, Medical Oncologist, Dana-Farber Cancer Institute, USA
  • Dereesa Reid, Patient representative, Hoag Orthopedic Institute, USA
  • Lisa Sheeran, Nurse coordinator Breast Service, Peter MacCallum Cancer Centre, Australia
  • Thomas Smith, Palliative care Specialist, Johns Hopkins Institute, USA
  • Mark Stoutjesdijk, Radiologist, Ikazia Hospital Rotterdam, Netherlands
  • Marie-Jeanne Vrancken Peeters, Surgical Oncologist, Antoni van Leeuwenhoek Hospital, member of NABON Breast Cancer Audit, the Netherlands
  • Yvonne Wengström, Nurse and Senior Lecturer, Karolinka Institutet, Sweden
  • Cheng Har Yip, Surgical Oncologist, Malaysia’s Sime Darby Medical Centre, Malaysia
  • Linetta Koppert, Surgical Oncologist, Erasmus MC, the Netherlands

Love Research Army

We combat the disparities that exist in research by challenging the scientific community to launch studies that are as inclusive and diverse as the people that breast cancer affects.

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