Multicenter Prospective Cohort of Informal Caregivers in Burgundy and Franche-Comté (ICE)

    Not Recruiting
  • End date
    Oct 21, 2025
  • participants needed
  • sponsor
    Centre Hospitalier Universitaire de Besancon
Updated on 8 August 2022
chronic disease
heart failure
heart disease
mini-mental state examination
geographic atrophy
degenerative disease
vascular disease
age-related macular degeneration


Medical progress and modification of lifestyles have prolonged life expectancy, despite the development of chronic diseases. The support and care are often provided by a network of informal caregivers composed of family, friends, and neighbors. They became essential to help maintening the elderly persons to live at home. It has been demonstrated that the importance and the diversity of informal tasks may jeopardize their own physical, mental and social well-being.

The aim of the Informal Carers of Elderly Cohort is to define, through a longitudinal study of their life course, the profiles of caregivers of patients with a diagnosis of one of the following diseases: cancer (breast, prostate, colon-rectum), neuro-degenerative diseases (Parkinson's disease, Alzheimer's and similar diseases), neuro-vascular diseases (Cerebrovascular Accident (CVA)), Age-related Macular Degeneration(AMD) and heart disease (heart failure), aged 60 years old and living in Burgundy or Franche-Comte. By following the different phases of the caregiving relationship from the announcement of the diagnosis, it will be possible to assess the quality of life of caregivers and evaluate the implementation of a pragmatic social action to help informal caregivers through a randomized intervention trial nested in the cohort.

Thanks to an analytical and longitudinal definition of the profiles of informal caregivers, this study could gather precise information on their life courses and their health trajectory by identifying the consequences associated with the concept of their role of aid in care. In addition, the randomized intervention trial will explore the efficacy, in terms of quality of life, and efficiency of a social action to support the caregivers. These data will allow to identify strategies that could be used to improve the existing sources of aid and to propose new approaches to help caregivers. This study will provide the opportunity to identify the most relevant means of support and to give an impulse for new healthcare policies.

Condition Breast Cancer, Colorectal Cancer, Prostate Cancer, Alzheimer Disease, Age-related Macular Degeneration, Parkinson Disease, Cardiac Disease, Ischemic Stroke, Hemorrhagic Stroke
Treatment Support provided by social worker, Information booklet receipt
Clinical Study IdentifierNCT02626377
SponsorCentre Hospitalier Universitaire de Besancon
Last Modified on8 August 2022

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