Excellent work as always. Absolutely agree priority needs are early diagnosis, right treatment first time, treatment of patients as a whole and proactive surveillance. (The chief medical officer's recent report on IBD stats in Scotland underlines more needs to be done for IBD patients too)
I would like to build on your comments re dietary influences on IBD. Absolutely research in this area is important. However societal (and sometimes scientific) presumptions on dietary influences and IBD can hugely undermine patients' burdens in overcoming societal misassumptions about disease cause, seriousness, treatment requirements and life impact. This happens more in IBD than other comparable disease. Research on diet and IBD needs to avoid the dangers of the correlation vs causation trap and take huge care in managing messaging to avoid "victim blaming" of patients with an awful disease which isn't their fault and the course of which is largely outwith their power to "control".
I also agree there needs to be much more joined up research and care on IBD "outside the bowel". I would like to see much more surveillance and understanding of correlating disease in eg eyes, skin, bones, other organs etc. For example, given my longstanding Crohn's diagnosis, delayed diagnosis of Anklosing Spondylitis and Uveitis could have been reduced if there was more focus and education on EIMs in IBD care and IBD correlating disease vulnerabilities. Neither patients nor primary care are educated on what to look out for and bowel symptoms are the narrow focus frequently in clinic. EIMs should be part of broader consistent IBD surveillance, targets, measurements and interdisciplinary care. The lack of IBD understanding more generally in primary care and lack of joined up specialist care worsens patient suffering, health outcomes and health economics.
I agree patients need much more support with the the psychological burden of disease. But I also think there is more work to be done on understanding and responding to the physiological impact of IBD and brain health in mental and neurological impact eg via gut-brain axis, inflammation effects on brain health etc. This understanding should constructively feed into treatment and support strategies in addition to "resiliency" support.
I am hugely supportive of improved disease surveillance measurements and patient and treatment stratification. However, I am also wary of risks of "healthcare by numbers". Narrow focus on calprotectin or "risk score" numbers can risk the importance of responding to the uniqueness of patient's experiences, needs and treatment responses.
Thank you for this article and power to you and your colleagues trying to identify and meet IBD patients' needs.
Yep, this ^. You are so right Caroline. Thank you for your careful consideration the mental toll this disease has on people. Nobody needs to hear that they caused their disease or are making it worse because of lifestyle choices. My son constantly works out, plays sports and eats whole foods and after years of biologics -- he's still not in remission. The last thing he needs is doctors telling him if only he hadn't eaten so many grilled cheese sandwiches growing up, he wouldn't be suffering. At one point, he was down 40 lbs.
Excellent work as always. Absolutely agree priority needs are early diagnosis, right treatment first time, treatment of patients as a whole and proactive surveillance. (The chief medical officer's recent report on IBD stats in Scotland underlines more needs to be done for IBD patients too)
I would like to build on your comments re dietary influences on IBD. Absolutely research in this area is important. However societal (and sometimes scientific) presumptions on dietary influences and IBD can hugely undermine patients' burdens in overcoming societal misassumptions about disease cause, seriousness, treatment requirements and life impact. This happens more in IBD than other comparable disease. Research on diet and IBD needs to avoid the dangers of the correlation vs causation trap and take huge care in managing messaging to avoid "victim blaming" of patients with an awful disease which isn't their fault and the course of which is largely outwith their power to "control".
I also agree there needs to be much more joined up research and care on IBD "outside the bowel". I would like to see much more surveillance and understanding of correlating disease in eg eyes, skin, bones, other organs etc. For example, given my longstanding Crohn's diagnosis, delayed diagnosis of Anklosing Spondylitis and Uveitis could have been reduced if there was more focus and education on EIMs in IBD care and IBD correlating disease vulnerabilities. Neither patients nor primary care are educated on what to look out for and bowel symptoms are the narrow focus frequently in clinic. EIMs should be part of broader consistent IBD surveillance, targets, measurements and interdisciplinary care. The lack of IBD understanding more generally in primary care and lack of joined up specialist care worsens patient suffering, health outcomes and health economics.
I agree patients need much more support with the the psychological burden of disease. But I also think there is more work to be done on understanding and responding to the physiological impact of IBD and brain health in mental and neurological impact eg via gut-brain axis, inflammation effects on brain health etc. This understanding should constructively feed into treatment and support strategies in addition to "resiliency" support.
I am hugely supportive of improved disease surveillance measurements and patient and treatment stratification. However, I am also wary of risks of "healthcare by numbers". Narrow focus on calprotectin or "risk score" numbers can risk the importance of responding to the uniqueness of patient's experiences, needs and treatment responses.
Thank you for this article and power to you and your colleagues trying to identify and meet IBD patients' needs.
Yep, this ^. You are so right Caroline. Thank you for your careful consideration the mental toll this disease has on people. Nobody needs to hear that they caused their disease or are making it worse because of lifestyle choices. My son constantly works out, plays sports and eats whole foods and after years of biologics -- he's still not in remission. The last thing he needs is doctors telling him if only he hadn't eaten so many grilled cheese sandwiches growing up, he wouldn't be suffering. At one point, he was down 40 lbs.