B12 PROM (Patient-Reported Outcome Measure)

[WiscGuy]

I came across a 2024 article describing the first stage in development of a B12 deficiency PROM (Patient-Reported Outcome Measure) which can be used to identify patients with B12 deficiency, and to monitor and compare the effectiveness of B12 therapies.

Several subsequent stages must be completed before the PROM can be put into use.

This is a link to the article.

journals.sagepub.com/doi/fu...

[PlatypusProfit8077]

the coverage of symptoms was really good! I’ll have to keep an eye on the follow ups. Thanks for sharing

[traveltime]

thank you, it’s a great find, easy to read, content rich

[helvella]

Good to see it is being done by people in both the UK and Netherlands. That seems to make it more likely to be widely adopted as countries do tend to be more persuaded by research in which they were involved. And each country's contributions will be made a touch less specific to the country by "the other lot". Plus, if it is actually fully trialled and starts to be implemented, that will be within two significantly different healthcare systems.

[Jillymo]

Both articles have been forwarded to the Nice Guidelines.

Thanks for posting WiseGuy.

[mountmuir27]

An unexpected and quite scary one for me was oscillopsia. I would look at stars in the night sky and they would appear to "drift" towards the right although actually stationary. When this happened I was started on immediate B12 injections despite the fact I was taking large oral doses of B12 (malabsorption).

[HeartyGilly]

Thank you. Very good item.

[Cherylclaire Forum Support]

Thanks again WiscGuy -

This is such a step forward for all.

I have often wondered if a wordsearch on the forum would reveal any non-medical phrases that we might use for symptoms that could be highly specific to B12 deficiency and no other condition ? It may not apply to all, or even most, of us - but could prove to be an indisputable connection to B12 deficiency.

Hopefully, this very thorough research preparation has got the right balance between being sufficiently simple and brief to allow for cognitive/ concentration/fatigue and memory issues, while also encompassing rarer symptoms that could be strong indicators.

Maybe there is a box at the end : "any other symptoms that you haven't mentioned to your GP because they sound so ridiculous, even to you ?"

I have personally seen the raised eyebrow that signifies when I may have taken my honesty policy a step too far !

[EllaNore]

Thank you. This is so encouraging. And the list of symptoms is very good. I sent this link to my GP. I hope they read it. Out of 62 symptoms I have 59 of them. I find the clumsiness to be extremely stressful to me. It affects everything i do all day long. Dropping everything, knocking things over, misjudging steps when walking to the point of falling. It is extremely frustrating. If B12 is the only treatment for all of this, then why don't daily injections help us more?

[WIZARD6787]

Thank you for that!

[B12again]

I have read this and have used software to break down the article in order to quickly get the gist of what it says. Thanks for sharing.

Here is a simplified and patient-friendly breakdown of the uploaded text regarding the development of a Patient-Reported Outcome Measure (PROM) for Vitamin B12 deficiency:

Purpose of the Study

The study aimed to create a tool—a questionnaire—that helps:

1. Diagnose B12 deficiency based on symptoms.

2. Monitor symptoms over time to check if treatments are working.

3. Make it easier for doctors and researchers to understand and manage B12-related symptoms.

Why is This Important?

• Vitamin B12 deficiency symptoms vary widely and overlap with other conditions, making it hard to diagnose.

• While blood tests improve quickly with treatment, symptoms like fatigue or nerve issues may persist, and doctors need a reliable way to track these.

• No existing tool focuses specifically on the full range of B12 symptoms.

How Was the Questionnaire Developed?

1. Gathering Ideas:

• Input was collected from doctors, researchers, and patients to identify important symptoms.

• Symptoms were grouped into categories like fatigue, nerve problems, emotions, and digestion.

2. Refining the Questions:

• Feedback from patients, online forums, and experts helped adjust the wording and format.

• Questions were tested for clarity and ease of understanding.

3. Testing on Patients:

• The questionnaire was tested with people aged 18–73 who had B12 deficiency.

• Feedback was used to ensure it was clear, relevant, and covered the symptoms well.

Final Questionnaire

• Contains 62 questions divided into 8 categories of symptoms:

1. General (e.g., fatigue, headaches, shortness of breath)

2. Senses (e.g., blurred vision, tinnitus)

3. Thinking (e.g., brain fog, forgetfulness)

4. In limbs/face (e.g., tingling, weakness, brittle nails)

5. Movement (e.g., muscle cramps, shaky hands)

6. Emotions (e.g., mood swings, anxiety)

7. Mouth & Abdomen (e.g., stomach pain, ulcers)

8. Urinary and reproductive systems (e.g., frequent urination, menstrual problems)

Next Steps

• The questionnaire still needs further validation to ensure it is reliable and accurate.

• Once validated, it could:

1. Help patients and doctors identify B12 deficiency sooner.

2. Monitor improvements during treatment.

3. Be used in research to evaluate B12 treatments.

Limitations

• It was developed in Dutch but translated into English.

• Most participants were from one specialised centre, so their symptoms might not represent all patients.

• It focuses only on adults; separate tools are needed for children.

Key Takeaways

This tool is a promising step in addressing the challenges of diagnosing and managing B12 deficiency. Once finalised, it could significantly improve care and treatment for patients with B12-related symptoms.

[Wwwdot]

Hi WiscGuy

Apologies for the delayed appreciation for this interesting article.

Thank you for sharing.

🤗🤗🤗