I assume this has been posted before but I saw this for the first time today
Seage, et al, Receiving a Diagnosis of Pernicious Anemia: Exploring Experiences of Relationships With Health Professionals , J Patient Exp. 2020 Oct; 7(5): 766–770.
Full text available . Includes quotes from patients. Very frustrating to read yet legitimizes all our experiences ! Kudos to these researchers from Cardiff Metropolitan University 👏👏
Abstract
Objectives: Pernicious anemia (PA) is a chronic condition caused by vitamin B12 deficiency. This is a qualitative study using interpretative phenomenological analysis (IPA), which aimed to explore the patients lived experience of diagnosis and treatment.
Methods: Eleven semistructured interviews were conducted in PA patients; these covered participants’ diagnostic and treatment journeys, the responses of others to their diagnosis, and the role health professionals have played in their medical care. Interviews were analyzed for recurrent themes using IPA.
Results: Three superordinate themes were identified: “The struggle to achieve a diagnosis,” “The significance of a diagnosis,” and “Battling for sufficient treatment.” Participants were dissatisfied with their medical care due to diagnostic delay, insufficient treatment, and poor relationships with their health professionals. Many experienced, anticipated, and internalized stigma, which led to a reduced quality of life and withdrawal from the medical profession.
Discussion: Participants’ interactions with their health professionals hindered their adaptation to their condition; this affected their psychological and physical well-being. Increased clinician awareness of stigma in the PA population symptoms and effective patient-centered communication is required.
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jade_s
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This is a very new one , full text also available journals.sagepub.com/doi/fu... Cotton et al, Examining the Diagnosis and Treatment Experiences of People Living With Autoimmune Gastritis and Pernicious Anemia, Journal of Patient Experience. 2023;10. This one is a review paper. Abstract:
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.
And this paper even did an analysis of various online forums including this one. And recruited people for online surveys. I now vaguely remember hearing about this.
I have read the research by Seage et al. The authors are 3 female researchers and there are 2 references to the World Health Organisation. What screamed at me was the repeated use of the word STIGMA.
We are not believed by the medical team, families, friends, colleagues. They can’t understand how physically unwell we are. If we dare to self inject then GOSH, we may as well have grown two heads!!
Stigma originates was from the Greek word tattoo. That is part of the reason I am heavily tattooed.
The Hippocratic Oath from the Greeks has been modernised and may include phrases similar to:-
‘I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.’
Thank you very much for sharing this. It has also come for me soon after another frustrating appointment with a haematologist who told me that all his other patients with PA are managing on 2-3 monthly injections (I thought some may not have told him they are SI). It is reassuring to see similar experiences now published in an academic journal.
Likely they are either (1) self injecting or (2) telling the doctor they don't feel well but it's ignored and attributed to something else (e.g. psychological problems, somatic disorder, etc)
But there is also option (3) some people really do seem to do well on 2-3 monthly injections (I have not seen one myself but this forum may be biased!). And if that's for the rest of their lives remains to be seen!
I completely agree, the issue is applying the one size fits all approach to treatment. I am considering sharing this article and another one I think you shared published earlier this year with my haematologist, although I'm not sure how open he may be to this information. Worth a try though!
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Better late than never
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