Measures to identify unmet medical needs of children and adults with autoimmune and autoinflammatory diseases

 

Patients with autoimmune and autoinflammatory diseases face tough challenges in terms of their physical, mental, and social health, and they have many medical needs that are not being fully addressed. To help these patients, it's important to clearly understand what these unmet needs are. One way to gather this information is through Patient-Reported Outcomes (PROs), which are reports from patients about their own health issues. These reports are very useful in understanding what patients truly need.

This article looks at established ways to measure PROs to determine which are best for identifying the unmet needs of patients with autoimmune and autoinflammatory diseases. Experts from the Ministry of Health, Labor, and Welfare met to discuss these measures and also considered the possibility of using technology to collect PRO data electronically.

The experts suggested 28 potential measures, both specific to certain diseases and general ones. They emphasized the importance of making sure the measures are clearly understood in different languages and noted that the results from adults and children should not be mixed. They also discussed the challenges of moving from paper-based PRO measures to digital ones, mainly because of concerns about accuracy and a lack of technical and financial resources.

For non-disease-specific PRO measures, the experts recommended KINDL® and EQ-5D-Y for children, and SF-36v2® and EQ-5D™ for adults.

Here’s a quick breakdown of what these terms refer to:

1. KINDL®: This is a questionnaire specifically designed to measure the quality of life in children. It looks at various aspects of a child's well-being, like their physical health, emotional state, and social life.

2. EQ-5D-Y: This is a version of the EQ-5D, which is used to assess the general health of children. The "Y" stands for "Youth," so it's tailored for younger patients. It focuses on five areas: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression.

3. SF-36v2®: This is a survey used to measure health-related quality of life in adults. It covers a wide range of health aspects like physical functioning, pain, mental health, and social well-being. The "v2" indicates it's the second version, with updates for better accuracy and clarity.

4. EQ-5D™: This is a general health measure used for both adults and children. Like the EQ-5D-Y, it looks at five key areas (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression) but is meant for a broader age group.

These tools help doctors and researchers understand how diseases and treatments affect a person's day-to-day life and well-being.

READ ORIGINAL JOURNAL REPORT: Consideration of useful patient-reported outcome measures to identify unmet medical needs of children and adults with autoimmune and autoinflammatory diseases published in Modern Rheumatology April 2025.

Lupus in children

Lupus in children, also known as pediatric lupus, is a rare but serious autoimmune disease where the immune system attacks healthy tissues and organs in the body. Normally, the immune system defends us against harmful things like viruses and bacteria, but in lupus, it mistakenly targets parts of the body like the skin, joints, kidneys, heart, and other organs.

Types of Lupus in Children

The most common type of lupus in children is Systemic Lupus Erythematosus (SLE). This form affects multiple parts of the body and can cause a variety of symptoms.

Symptoms of Lupus in Children

Lupus symptoms can vary a lot, and some kids may have mild symptoms while others experience more severe issues. Common symptoms include:

• Skin rashes, often a butterfly-shaped rash across the cheeks and nose

• Joint pain or swelling, which might affect knees, wrists, and hands

• Fatigue, feeling tired all the time

• Fever without a clear cause

• Sensitivity to sunlight (the skin can get worse with sun exposure)

• Hair loss or thinning hair

• Swelling in the legs or around the eyes

• Mouth sores or ulcers

Diagnosis

Diagnosing lupus in children can be tough since the symptoms can look like other conditions. Doctors typically use a combination of:

• Blood tests to check for specific antibodies associated with lupus

• Physical exams to assess signs like rashes or joint swelling

• Urine tests to check kidney function, as lupus can affect the kidneys

Treatment

While there’s no cure for lupus, the goal is to manage symptoms and prevent flare-ups. Treatment often includes:

• Medications like anti-inflammatory drugs, corticosteroids, or immunosuppressive drugs to reduce the immune system’s attack on the body.

• Regular check-ups to monitor how the disease is progressing, especially kidney function and organ health.

• Lifestyle changes, such as using sunscreen to protect from sun sensitivity, maintaining a healthy diet, and getting enough rest.

Impact on Children

Living with lupus can be tough for kids. They may need to take regular medications, and they might miss school or other activities due to feeling unwell. The condition can also affect their social life and emotional health, so strong support from family, friends, and healthcare providers is important. Talking with a counselor or support groups can help kids cope with the emotional challenges of living with a chronic illness.

Outlook

With early diagnosis and proper treatment, many children with lupus can live active lives. Some may have long periods where their symptoms are under control, while others might experience flare-ups that require additional treatment. The key is to catch it early and manage the disease effectively.

Conclusion

Lupus in children is a serious condition, but with the right treatment, children can lead fulfilling lives. Awareness, early diagnosis, and good medical care are crucial for managing the disease and helping kids stay as healthy as possible.

Understanding coeliac disease

Whether you call it celiac disease or coeliac disease it is the same thing.

Here’s a rundown on everything you need to know about coeliac disease, from its symptoms to the necessity of a gluten free diet.

Coeliac disease is an autoimmune condition where the body's immune system mistakenly attacks its own tissues when gluten is eaten. 

Gluten is a protein found in wheat, barley, and rye. 

This immune response damages the lining of the small intestine, leading to poor nutrient absorption and various digestive and non-digestive symptoms.

Symptoms of Coeliac Disease

Symptoms can vary from person to person but commonly include:

• Digestive symptoms: Diarrhea, bloating, constipation, nausea, stomach pain, and gas

• Nutritional deficiencies: Due to poor absorption of nutrients, leading to anemia, osteoporosis, and weight loss

• Other symptoms: Fatigue, skin rash (dermatitis herpetiformis), headaches, joint pain, infertility, and neurological issues like numbness or tingling in hands and feet

Causes & Triggers

The exact cause is not fully understood, but it is linked to genetic and environmental factors. It is more common in people with a family history of the condition and those with other autoimmune disorders like type 1 diabetes or thyroid disease.

Diagnosis & Treatment

Diagnosis involves:

• Blood tests to check for specific antibodies

• Endoscopy with a biopsy to assess damage in the small intestine

The only treatment for coeliac disease is a strict, lifelong gluten-free diet. Even small amounts of gluten can trigger symptoms and cause long-term damage.

Foods to Avoid (Contain Gluten)

🚫 Wheat-Based Foods

• Bread, pasta, cereals, crackers, and baked goods

• Wheat flour, whole wheat, wheat bran, and wheat starch

🚫 Other Gluten-Containing Grains

• Barley (including malt, malt vinegar, malt extract)

• Rye

• Triticale (a hybrid of wheat and rye)

• Some oats (unless labeled gluten-free, due to cross-contamination)

🚫 Processed Foods That May Contain Hidden Gluten

• Soy sauce, salad dressings, marinades

• Some soups, sauces, and gravies (thickened with flour)

• Flavored chips, fries, or seasonings

• Beer and some alcoholic beverages

• Processed meats (sausages, deli meats)

• Some chocolates, candies, and ice creams

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Safe Gluten-Free Foods

✅ Naturally Gluten-Free Grains & Starches

• Rice (white, brown, wild)

• Quinoa

• Corn & cornmeal

• Buckwheat

• Millet

• Sorghum

• Certified gluten-free oats

✅ Protein Sources

• Fresh meat, poultry, fish (unprocessed)

• Eggs

• Legumes (beans, lentils, chickpeas)

• Nuts and seeds

✅ Dairy Products

• Milk, yogurt, cheese (check for additives)

✅ Fruits & Vegetables

• All fresh fruits and vegetables

✅ Gluten-Free Alternatives

• Gluten-free bread, pasta, and cereals (labeled "gluten-free")

• Gluten-free flour (almond, coconut, chickpea, rice flour)

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Important Tips for a Gluten-Free Diet

🔹 Read Labels Carefully – Gluten can hide in unexpected places like sauces, seasonings, and processed foods. Always check for “gluten-free” certification.
🔹 Avoid Cross-Contamination – Use separate utensils, toasters, and cooking areas to prevent gluten exposure.
🔹 Dine Out Cautiously – Ask about gluten-free preparation when eating at restaurants.
🔹 Supplements & Medications – Some contain gluten; check labels or consult a pharmacist.

🍽 Gluten-Free Meal Ideas

🥞 Breakfast

✅ Gluten-Free Oatmeal – Certified gluten-free oats with almond milk, banana, and honey
✅ Egg & Avocado Toast – Scrambled eggs on gluten-free bread with avocado and tomato
✅ Smoothie Bowl – Blended banana, berries, and yogurt topped with nuts and seeds
✅ Chia Pudding – Chia seeds soaked in coconut milk with maple syrup and berries
✅ Gluten-Free Pancakes – Made with almond or rice flour

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🥗 Lunch

✅ Grilled Chicken Salad – Mixed greens, grilled chicken, avocado, nuts, and a gluten-free dressing
✅ Quinoa & Veggie Bowl – Quinoa, roasted sweet potatoes, black beans, and a lemon dressing
✅ Rice Paper Wraps – Stuffed with shrimp, veggies, and a gluten-free peanut sauce
✅ Gluten-Free Sandwich – Turkey, cheese, and spinach on gluten-free bread
✅ Stuffed Peppers – Bell peppers filled with ground turkey, rice, and spices

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🍲 Dinner

✅ Grilled Salmon & Roasted Veggies – With olive oil and herbs
✅ Gluten-Free Pasta – Made from brown rice or chickpeas, with marinara sauce and veggies
✅ Taco Bowls – Corn tortillas or a bowl with ground beef, salsa, and avocado
✅ Stir-Fry – Chicken or tofu with veggies over rice (use gluten-free soy sauce)
✅ Shepherd’s Pie – Mashed potatoes over seasoned beef and veggies

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🍪 Snacks & Desserts

✅ Rice Cakes with Peanut Butter & Banana
✅ Hummus with Carrot & Cucumber Sticks
✅ Popcorn with Olive Oil & Sea Salt
✅ Yogurt with Gluten-Free Granola
✅ Dark Chocolate & Almonds
✅ Gluten-Free Brownies (made with almond flour)

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🛒 Recommended Gluten-Free Brands & Products

Here are some trusted brands that make certified gluten-free products:

🥖 Bread & Baking

• Udi’s – Gluten-free bread, muffins, bagels

• Canyon Bakehouse – Sandwich bread, burger buns

• King Arthur – Gluten-free flour and baking mixes

• Bob’s Red Mill – Almond, rice, and oat flour

🍝 Pasta & Grains

• Barilla Gluten-Free Pasta

• Tinkyada Brown Rice Pasta

• Banza Chickpea Pasta

• Ancient Harvest Quinoa

🥣 Cereal & Snacks

• Chex Cereal (Rice & Corn)

• Kind Bars

• LÄRABAR (most flavors)

• Enjoy Life Cookies & Snacks

🌮 Sauces & Condiments

• Tamari (Gluten-Free Soy Sauce) – San-J brand

• Annie’s Naturals – Gluten-free salad dressings

• Sir Kensington’s Ketchup & Mayo

🍻 Beverages

• Gluten-Free Beer – Omission, New Grist

• Hard Ciders – Angry Orchard, Strongbow

• Safe Alcohols – Wine, tequila, rum, and most vodkas

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✨ Final Tips

✔ Meal Prep – Plan ahead to avoid gluten exposure
✔ Grocery Shop Smart – Look for "Certified Gluten-Free" labels
✔ Experiment – Try different gluten-free flours and grains to find your favorites.

More reliable sources of information about coeliac disease: with evidence based and up to date resources:

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🌍 International Organizations & Medical Sources

1️⃣ Coeliac UK – A leading charity in the UK providing research, support, and dietary guidance.

2️⃣ Celiac Disease Foundation (USA) – Offers education, gluten-free diet advice, and the latest research updates.

3️⃣ Beyond Celiac – Focuses on accelerating research for a cure and provides practical gluten-free living tips.

4️⃣ The Mayo Clinic – A trusted medical source with a clear explanation of symptoms, diagnosis, and treatment.

5️⃣ National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) – A branch of the U.S. government offering research-based information.

6️⃣ The Celiac Disease Center at Columbia University – Provides research findings and medical guidance from experts in the field.

7️⃣ World Gastroenterology Organisation (WGO) – Offers global guidelines on coeliac disease diagnosis and management.

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📚 Scientific Research & Journals

If you're interested in scientific studies, you can find peer-reviewed articles here:
🔹 PubMed – Database of medical research studies
🔹 Google Scholar – Search for academic papers on coeliac disease
🔹 The American Journal of Gastroenterology – Publishes research on digestive diseases, including coeliac disease

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🏥 Patient Support & Online Communities

If you're looking for practical tips, recipes, and community support, check out:
✔ r/Celiac – A Reddit community for coeliac discussions
✔ Facebook Groups – Search for "Coeliac Disease Support" groups
✔ Gluten-Free Watchdog – Monitors gluten levels in products

Support groups for children with Lupus and their families

Support groups can be really helpful for children with lupus and their families. These groups provide a space to share experiences, learn from others, and feel less alone. For children with lupus, support groups can also help them connect with others who understand what they're going through, while also providing emotional support and coping strategies. Here are some options for support groups and resources:

1. Lupus Foundation of America (LFA)

• The Lupus Foundation of America offers a variety of resources for both adults and children with lupus, including support groups and online communities. They often have local chapters where families can connect with others.

• Website: www.lupus.org

• LFA has Children and Teens info here.

• LFA also offers LupusConnect, an online community where patients and caregivers can connect.

2. Lupus Support Groups on Facebook

• Facebook has many private support groups for people with lupus, including those specifically for children or families of children with lupus. These groups allow parents and children to share experiences, ask questions, and offer support to each other.

• You can search for groups like "Lupus in Children" or "Pediatric Lupus Support" on Facebook to find active communities.

3. The American College of Rheumatology (ACR)

• ACR offers information about pediatric lupus and can direct families to support resources and specialists.

• Website: www.rheumatology.org

4. Children’s Hospitals and Pediatric Rheumatology Centers

• Many children's hospitals or clinics that specialize in rheumatology will offer support groups or can direct families to local support options. For example, hospitals like Boston Children’s Hospital and Children’s Hospital of Philadelphia often have lupus-specific programs or support groups for young patients and their families.

5. Lupus UK

• Although based in the UK, Lupus UK provides online support and resources for people with lupus worldwide, including for children and their families. They often have online forums and other virtual support options.

• Website: www.lupusuk.org.uk

6. Online Forums and Communities

• Websites like PatientsLikeMe and HealthUnlocked have communities where people living with lupus can connect, share experiences, and offer advice. Some forums are specifically for younger people or parents of kids with lupus.

7. Support from Rheumatologists and Social Workers

• Many pediatric rheumatologists and social workers can help connect families with local support groups or peer mentors who have experience with pediatric lupus. It's always a good idea to ask your child's doctor about available local or virtual support options.

Benefits of Support Groups:

• Emotional support: Connecting with others who truly understand the challenges of living with lupus can provide comfort.

• Practical advice: Parents and children can share tips on managing symptoms, navigating school, or handling treatment.

• Peer connections: Children can build friendships with others who are going through similar experiences.

• Awareness and advocacy: Support groups can help families stay informed about new treatments, research, and advocacy opportunities for lupus.

Finding the right support group can make a big difference in coping with the emotional and practical challenges of lupus. If you're unsure where to start, talk to your child's doctor—they may have additional recommendations or connections to local groups.

Plastic particles, autoimmune conditions and hope for the future.

2024 research conducted at the University of California, San Diego discovered that tiny plastic particles have the ability to penetrate the human body and trigger autoimmune conditions and other health conditions. The study found that these microplastics can trigger inflammation and disrupt the immune system, leading to a higher chance of autoimmune illnesses.

"We're just starting to understand the implications of microplastics. We've only scratched the surface of knowing the environmental and health impacts," said Professor of Chemistry and Biochemistry Michael Burkart, one of the paper's authors.

What can we do as individuals?

• Do not buy anymore plastic products and try and use reusable ceramic or glass products. 
• Support initiatives that promote plastic reduction like not using lastic bags or lastic straws
• Use cloth bags instead of plastic bags
• Support businesses that promote the reduction of plastic use and advocate for combatting plastic pollution.

What is being done?

Finding eco-friendly alternatives to traditional plastics is crucial.

Exciting findings from UC San Diego and Algenesis reveal that the eco-friendly polymers, they have created, break down naturally, even at the microplastic level, in under seven months.

"When we first created these algae-based polymers about six years ago, our intention was always that it be completely biodegradable," said another of the paper's authors, Robert Pomeroy, who is also a professor of chemistry and biochemistry and an Algenesis co-founder. "We had plenty of data to suggest that our material was disappearing in the compost, but this is the first time we've measured it at the microparticle level."

"When we started this work, we were told it was impossible," stated Burkart. "Now we see a different reality. There's a lot of work to be done, but we want to give people hope. It is possible."

Full article 

Could it be PANS/PANDAS?

We're hearing the stories of children affected.

We're hearing the stories of children across the country, whose personalities have completely changed - with the cause a rare brain condition...  PANS/PANDAS.

PANS/PANDAS symptoms from PANS PANDAS UK

They are both autoimmune conditions that usually develop suddenly following an illness, like Scarlett Fever for example.

Antibodies created to fight the infection go on to mistakenly attack the brain, leading to symptoms like massive changes in behaviour, including severe OCD.

Harry, whose name we've changed, was a happy nine-year-old boy in Lichfield, getting involved in sports and doing well at school, when he caught Scarlett Fever at the end of 2019.

A couple of months later, he started to develop severe OCD, and started to refuse to eat and drink. He also started writing in his diary that he wanted to die.

Dad Richard - whose named we've also changed, along with his mum initially took him to see his GP, but after his condition got worse, was taken to hospital for two weeks.

"He just seems less happy, less willing to communicate, and his sleeping pattern is all over the place. He's not been able to have a proper sleep for a very long time.

"Everything changed pretty much overnight".

Read the full story at RAYO

SYMPTOMS 

PANS and PANDAS are thought to be autoimmune disorders that occur when the body's immune system mistakenly attacks the brain, leading to inflammation and a wide range of neuropsychiatric symptoms. These symptoms can include sudden onset of obsessive-compulsive disorder (OCD), tics, restricted food intake, developmental regression, anxiety, depression, irritability, and even hallucinations and delusions.

One of the most distinctive features of PANS and PANDAS is that symptoms tend to come on suddenly, often following an infection, such as streptococcal infections, influenza, or chickenpox. Children who previously were healthy and developmentally on track may suddenly start exhibiting signs of OCD or other neuropsychiatric symptoms. ~ 

2024 Royal College of Nursing

More information and support

• in the UK 
• in the US a Pandas Physicians Network.
• in Australia a parents group
• in Europe a Facebook group

If you know of any other organisations or support groups for PANS and PANDAS please let us know in the comments to be included here. 

Early symptoms and the Specific Risk of Multiple Sclerosis

Depression, UTIs, and Constipation Are More Common in People Who Are Later Diagnosed With MS according to an article in Everyday Health by Becky Uham on December 7, 2023.

Researchers believe that some early physical symptoms could be caused by the same underlying disease process. 

People who are eventually identified as having multiple sclerosis (MS) are more likely to have conditions like depression, constipation, sexual issues, and urinary tract infections (UTIs) five years before their diagnosis compared with people who don’t get MS, according to a new study published December 5 in Neurology.

Discussed in this article ~

• MS Prodrome May Be Detectable Years Before Neurological Symptoms or Diagnosis
• The 5 Symptoms Significantly Associated With a Future MS Diagnosis
• Depression More Likely Before and After MS Diagnosis
• Could UTIs, Sexual Dysfunction, and Constipation Be Caused by the Same Underlying Disease Process as MS?

READ THIS FULL ARTICLE

RESEARCH ARTICLE DECEMBER 2023 ~  Association Between Diseases and Symptoms Diagnosed in Primary Care and the Subsequent Specific Risk of Multiple Sclerosis

READ OTHER ARTICLES ON MS

Autoimmune News round up

 What's been happening in the word of medical research into autoimmune conditions in the last week? You can find a round up here. Just click on the links to go to the full report.

• Antibodies that activate stimulatory or inhibitory receptors are of great therapeutic interest for the treatment of cancer or autoimmune diseases. It emerges that such antibodies work better if they don’t bind to receptors too tightly. NATURE 

• COVID-19 might increase risk of autoimmune diseases. A study into 641,407 individuals with COVID-19 were matched to more than 1.56 million controls. NEWS MEDICAL LIFE SCIENCES

• Single-cell T cell receptor sequencing of paired human atherosclerotic plaques and blood reveals autoimmune-like features of expanded effector T cells. NATURE CARDIOVASCULAR RESEARCH

• PSMC6 induces immune cell infiltration and inflammatory response to aggravate primary Sjögren’s syndrome. NATURE

• National study shows Indigenous patients with autoimmune liver disease face worse symptoms and outcomes. Search for the cause and better treatments continues, researcher says. UNIVERSITY OF ALBERTA

• Long-standing mystery about mRNAs resolved. CORNELL UNIVERSITY

• Circulating Th17 T cells at treatment onset predict autoimmune toxicity of PI3Kδ inhibitors. NATURE

• Scientists have discovered the role of microRNA on inflammation in lupus disease. They identified the microRNAs that are downregulated in the disease and how they converge to cause the disease. SCIENCE DAILY

• Insufficient sleep during adolescence and risk of multiple sclerosis: results from a Swedish case-control study. BMJ Journals

• Researcher takes another step toward discovering how a brain molecule could halt MS. MEDICAL EXPRESS

You can also visit our main site Autoimmune Disease List to see a full list of recent autoimmune disease news updates which includes research. 

Think psoriasis is just a rash? Think again.

Psoriasis is a chronic inflammatory disease characterized by patches of abnormal skin, that affects between 2 percent and 3 percent of the world’s population. But psoriasis is more than skin deep. It is associated with many diseases and the disease associations just keep growing.

Psoriasis and just some of its associations to systemic diseases of a chronic inflammatory nature

Bruce Jancin writing in Rheumatology News reported on information presented at the European Academy of Dermatology and Venereology. Published studies have linked psoriasis with significant increases in chronic obstructive pulmonary disease, multiple sclerosis, migraines, uveitis, pancreatitis, and abdominal aortic aneurysm.

Chronic Obstructive Pulmonary Disease (COPD) refers to a group of diseases that impair the flow of air to the lungs, making it more difficult to breathe.  A 2015 review concluded that people with psoriasis had an approximately two-fold greater risk of developing COPD, compared with the general population. The risk was higher in people with severe psoriasis. 

Multiple sclerosis is an inflammatory, autoimmune disease of the central nervous system that disrupts communications between the brain and other parts of the body. A meta-analysis of 43,643 patients with multiple sclerosis shows that these patients have an increased incidence and prevalence of psoriasis. Association of Multiple Sclerosis with Psoriasis: A Systematic Review and Meta-Analysis of Observational Studies.

Migraines are a common neurological disorder, characterised by moderate to severe headache and nausea. Psoriasis was found to be associated with an almost 4-fold increase in risk for migraine in US research at the New York University School of Medicine in 2019. Psoriasis and the risk of migraines in the United States.

Uveitis is inflammation in the eye which affects the middle layer of tissue in the eye wall. The results of a 2020 study revealed significantly increased risk of both prevalent and incident uveitis among patients with psoriasis. Psoriasis and Risk of Uveitis: A Systematic Review and Meta-Analysis

Pancreatitis is the inflammation of the pancreas, an organ that sits near the stomach and liver. A 2016 study demonstrated that patients with psoriasis are at a significantly elevated risk of CP and the risk increased with severity of psoriasis. The Risk of Chronic Pancreatitis in Patients with Psoriasis: A Population-Based Cohort Study. 

Abdominal aortic aneurysm is a localized enlargement of the abdominal aorta. Psoriasis was found to be an independent risk factor for abdominal aortic aneurysms (AAA), according to a 2016 Danish study, published in Arteriosclerosis, Thrombosis, and Vascular Biology: Nationwide Study on the Risk of Abdominal Aortic Aneurysms in Patients With Psoriasis.

Here is a list from the National Psoriasis Foundation/USA of Related Conditions of Psoriasis which also includes Cardiovascular Disease, Metabolic Syndrome, Obesity, Hypertension, Dyslipidemia, Diabetes, Anxiety and Depression, Inflammatory Bowel Disease, Cancer, Kidney Disease, Sleep Apnea and Hepatic (liver) Disease.

Video Comment by Dr Nathan Wei of the Arthritis Treatment Center : A more serious condition than we thought.

Nathan Wei, MD FACP FACR was a rheumatologist and Director of the Arthritis Center of Maryland. He was a Clinical Assistant Professor of Medicine at the University of Maryland School of Medicine at the time of creating this video.