by Lexi Hanson (Missouri, U.S.A.)
A brown wall with a white spray-painted ‘disabled’ symbol.
In his article “Measuring Disability in IBD: The IBD Disability Index,” Colombel discusses how IBD is viewed in literature and society. He mentions that IBD has received limited attention due to two main reasons. First, IBD has been considered less disabling compared to other chronic diseases, like multiple sclerosis, leading to underestimation of its impact. Second, there has been confusion in the literature about the true definition of "disability" in relation to IBD, with many definitions that do not align with the World Health Organization's (WHO) standard.
Disability, according to the WHO, refers to the objective problems patients face across various health domains, which is distinct from subjective quality of life. Challenges specific to IBD, such as access to toilets and dietary restrictions, affect disability, and Colombel argues, should still be measured using the same WHO definition applied to all diseases.
To address this gap, the IBD disability index was developed through a comprehensive process, including a systematic literature review, patient interviews, an expert survey, and a cross-sectional study across multiple continents. The final index incorporates a range of factors such as sleep, energy, body image, pain, and environmental influences (e.g., access to healthcare). It aims to provide a standardized measure of disability in IBD patients.
The IBD disability index is currently being validated and is expected to help in clinical trials and research. Some questions in the index include sleep, body image, and pain. Once validated, Colombel believes it could influence patient care by raising awareness about disability in IBD and guiding healthcare interventions. It could also help identify predictors of disability and support the development of strategies to prevent disease progression and long-term disability.
In clinical practice, while the index may not be used daily, it could inform clinicians to ask patients about issues that affect their disability, improving patient care and satisfaction. Measuring disability in IBD will ultimately lead to better understanding and management of the disease, enhancing both clinical outcomes and quality of life for patients.
My thoughts:
This is so fascinating to me, as someone with IBD. The comparison of how disabled someone is based on how impacted they are by their circumstances – and if they can make it through the cut-throat application process to be considered “truly” disabled by the government – seems to lead to isolation of people with chronic conditions like IBD.
When we’re quick to make comparisons or “rank” disability, we alienate others who may not experience disability exactly as we do, but who still may understand our lifestyle or lived experience more so than able-bodied individuals.
I also think there's a unique aspect of being in "remission" with IBD that others don’t always understand, which makes it complex. Sometimes, my IBD impacts me more than it might seem to others, but because the effects aren’t always visible, it’s a concept that can be difficult for people to fully understand.
Having an "index" to show how IBD affects people's lives could really help shine a light on the struggles many face. It could be a way to put into words the challenges that aren’t always visible, making it easier for others to understand just how much this condition impacts daily life – especially in contexts like healthcare appointments, where patients sometimes feel their experiences are not being heard or validated by providers.
Encouraging healthcare providers to use a client-centered, holistic approach when listening to us can lead to a healthier relationship with the healthcare field, and additions like training and feedback surveys could also help in this aspect. In the meantime, we can start by sharing our IBD experiences (through blogs, videos, campaigns, or social media), to help others understand the real-life impacts of IBD, in hope that spreading awareness and knowledge provides some insight into what we go through!
Citation: Colombel JF. Measuring Disability in IBD: The IBD Disability Index. Gastroenterol Hepatol (NY). 2013 May; 9(5): 300-2. https://pmc.ncbi.nlm.nih.gov/articles/PMC3740806/
(Image from Unsplash)