This year, for World IBD Day 2022, EFCCA would like to raise awareness about the impact IBD has on elderly people. Under the slogan IBD has no age we want to put the focus on elderly people (60 plus) and see how living with Crohn´s disease and Ulcerative Colitis (collectively known as Inflammatory Bowel Disease) is impacting on their quality of life and care.
Why a focus on the elderly?
This group has been consistently underrepresented even though the incidence and prevalence of IBD in older patients is rising. There are estimates that in the next decade, older patients with IBD will represent more than one-third of all patients with IBD. Yet, there is little scientific evidence to understand of how IBD impacts on adverse health outcomes or quality of life in older people with IBD.
EFCCA campaign: IBD has no age
In the lead up to World IBD Day we would like to organize a campaign putting under the spotlight of this underrepresented group. The campaign will consist of various elements including:
- Social media awareness raising campaign
We will be sharing material highlighting several issues on this topic from impact on quality of life, preference of treatments, participation in clinical trials and various other elements.
EFCCA has been discussing this topic with representatives from 8 patient associations where we have been working on the main concerns of IBD in the elderly. The testimonials below are a recollection of people who have been living with IBD for a long time making reflections on how things were in the past and how they are now.
- Lack of scientific data
Currently a very small proportion of participants enrolled in IBD clinical trials and long-term pharmacovigilance initiatives are over the age 65. This results in a relatively poor evidence base to guide appropriate therapeutic management decisions for this demographic. Most clinical data to inform these practices is based on observational data or indirect evidence because of the lack of participation enrolled in IBD clinical trials and long-term pharmacovigilance initiatives.
EFCCA calls for more research into IBD and the elderly
- IBD and comorbidities in the elderly
Elder IBD patients are at much higher risk of comorbidities and complications due to their condition. They are also more likely to take a wide range of medicines to treat these other conditions. Surgical interventions of IBD in elderly populations can also be associated with high risk due to high comorbidity. Common comorbidities, especially malignancy and increased disposition to infections, can render elderly patients more vulnerable to complications of immunosuppression.
EFCCA calls for more research into IBD, comorbidities and the elderly
- Patient-centric care
¨When it comes to IBD, there is no 'typical' older person.¨ IBD can impact patients in different ways. Some 60-year-olds have same or similar physical capacities as many 20 year-old IBD patients, other IBD patients will experience decline in physical and other capacities much earlier. Health systems need to be realigned to focus on maintaining approaches where treatment is tailored to the individual.
EFCCA calls for personalized approaches to care
This graphic material can be used referencing our campaign and using the folowing hashtags:
We will also organize a webinar on World IBD Day on the issue of IBD in the elderly and the need for more comprehensive scientific evidence. Our invitiees will include representatives from the scientific community to discuss the challenges and unmet needs of elderly patients and to discuss possible collaboration on a joint survey on this topic. Therefore, the webinar will also serve as the launch for the development of a survey with the aim to gather a wider range of information related in general on the impact of IBD on the quality of life and specifically on the age group of people 60 and above.
Join webinar: https://fb.me/e/1NIQT9VJs
5-5.40 PM (CEST):
Opening remarks, Ciara Drohan, EFCCA Vice President
Setting the scene: IBD has no age campaign, Isabella Haaf, EFCCA Deputy Director
-the Scientific Perspective: Dr Vera Asscher, MD, Leiden University Medical Center
-the Patient Perspective: Arne Schatten (LMF, Norwegian) and Daniel Sundstein (CCF, Denmark)
5.40-6 PM (CEST):
Questions and Answers
- Resource material
We will compile and make available material on the subject that is already available and that can feed into the preparation of the above-mentioned survey. As usual all our campaign material will be made available to our members and can be modified if need to local needs and priorities.
Stay tuned and for more information. please get in touch with: Isabella Haaf, EFCCA Deputy Director at: firstname.lastname@example.org