There is limited research evaluating the diagnosis and treatment of patients with autoimmune gastritis (AIG) and pernicious anemia (PA). We used a 2-phase data collection process to examine the literature and individual patient accounts. Phase one comprised a systematically conducted literature review focusing on diagnosis and treatment, relationships with healthcare practitioners and health-related quality of life (HRQOL). Phase two involved analysis of individual accounts via posts in online patient forums. We identified 6 main themes: the diagnosis journey, seeking treatment, patient-provider relationships, HRQOL, patient disempowerment, and the “expert patient.” Our findings confirm significant knowledge gaps concerning AIG/PA across the healthcare community. These have a cascading effect starting with delays in diagnosis and poor treatment protocols and often lead to complete withdrawal from care seeking. The establishment of standard consensus guidelines and improved clinical awareness should be urgently addressed. Interventions that better help patients understand their illness are also needed to improve psychological health. Without these changes disengagement from health systems, and poor health outcomes, will continue for this population group.
Regarding.... Expert Patients and Online Forums ( Fora?)
I will delve into this doc between shifts as my trawl and processing of all sorts of stuff continues, so thank you.
But I do like a comment made in the Intro of the doc about how they looked at AIG and related diseases PA, B12 etc ...In 2 Phases, and in Phase2 they drew in information, reference data ..
extract here...
"...Phase two involved analysis of individual accounts via posts in online patient forums. We identified 6 main themes: the diagnosis journey, seeking treatment, patient-provider relationships, HRQOL, patient disempowerment, and the “expert patient.” Our findings confirm significant knowledge gaps concerning AIG/PA across the healthcare community..."
Great find for us Helvella. I am clapping you. 👏👏👏
Excellent article helvella! Thank you so much for posting this. I think I'm going to send this to my doctors. Great job finding this!
As I look for information about B12 d and PA, all the information is in the UK. I can't find any United States information on it. They are so far behind and so lacking on this. I'm so grateful for the information the UK has and all the help I've gotten from all of you.
Thanks for flagging this - I note it's co-funded by PAS as well, a significant effort to get all this in a published peer-reviewed article that will carry credibility with practitioners.
There is one slightly ambiguous item in the conclusion:
"The reliance of biomarkers rather than symptoms to manage treatment is a significant unmet need, possibly resolvable by a “patient-centered” approach to AIG/PA"
- which could suggest that reliable biomarkers are the unmet need, rather than treat the symptoms. It should be clear enough from the Discussion though.
Excellent - this is so encouraging to see. It's the first of it's kind too.
I do get a more 'universal' sense that the pressure is heating up for the medical community to sort themselves out. We had the report in October that exposed the number of PA/B12D sufferers self medicating, now this that shows hard data on time to diagnosis, delays to diagnosis, and poor administration of B12D supplementation.
Since Netherlands offers 2 years of ongoing twice weekly injections, the UK and US are surely put to shame by this? Of course, there is still a risk that patients don't get diagnosed, due to medical ignorance/negligence, but if they do then they will get optimal ongoing treatment.
So why is the UK failing? And as the report states, it is not clear why medics are refusing treatment.
We have a battle on our hands, since Doctors are not trained in this stuff. So in effect, our illness undermines their profession. For medics, this is an enormous ego knock. How can they sleep well at night knowing that they don't know about this common and severe illness?
The problem lies in education. We are not getting Doctors to study nutritional science. And we are not believing patients who have symptoms because 'it's not possible'. Well, it is possible. You just don't know about it. Neither do most average people in the street.
Medical science has not progressed much in 50 years. So we should be lobbying against this somehow - putting pressure on them to fess up and admit their ignorance and change.
Surely the NHS runs to KPIs and metrics they need to hit? Why is diagnosis of B12 or PA not a key metric?
Again, culpability lies somewhere and, ultimately, with the government. So please would the health minister stand up?
Or should we get Matt Hancock back in to tell us to eat Broccoli? 😆
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