1. What is the decision or change (e.g. clinical topic, practice guideline, system design, delivery of care) you are facing or struggling with where a summary of the evidence would be helpful?
I would like to see medical research on the intersection of acquired brain injury and chronic kidney disease. My husband suffers with both and the care is fragmented. It is difficult to understand how each of these impacts the other. This would help healthcare providers understand which illness may be the root cause for certain symptoms and be more knowledgeable about patients who have both. As his caregiver, I struggle to cope with someone with both these conditions and would benefit from best practice guidelines. I have observed a lot of bizarre symptoms in my husband over the years that I am convinced are the product of these combined conditions but I have no evidence to support this claim.
2. Why are you struggling with this issue?
There is little support in this area. The professional bodies such as brain injury associations and kidney disease associations have nothing about how these two conditions impact each other. It impacts his overall care as healthcare professionals don't understand the relationship of these two conditions. It also fragments his care as each condition is a unique specialty and the specialties don't consult consistently.
3. What do you want to see changed? How will you know that your issue is improving or has been addressed?
It would be helpful to have medical explanations for the symptoms and behaviors I observe with suggestions for treatment. I would be able to share this information with his care team.
4. When do you need the evidence report?
5. What will you do with the evidence report?
I would use it in several ways. I would share this with all the specialists involved with my husband. Further, I would escalate this to organizations and working groups looking at improving or providing healthcare for these populations such as dialysis clinics, transplant clinics, services for brain injury, hospital/healthcare continuous improvement working groups to name a few.
Optional Information About You
What is your role or perspective? Caregiver and healthcare provider
May we contact you if we have questions about your nomination? Yes