India needs patient-centric care and trained counsellors to manage Inflammatory Bowel Diseases burden: experts

The Global Burden of Disease (GBD) 2019 study estimated 2,70,719 cases of Inflammatory Bowel Disease (IBD) in India, with an age-standardised prevalence rate of 20.34 per 100,000. This marks a dramatic rise from 1,30,000 cases in 1990. At the same time, more people are being diagnosed with ulcerative colitis, and Crohn’s disease –though often underdiagnosed or underreported — is becoming a big concern for public health.

IBD, which includes ulcerative colitis and Crohn’s disease, is chronic inflammatory conditions of the digestive tract. Symptoms such as diarrhoea, abdominal pain, fatigue, and weight loss can severely impact quality of life.

According to Nandish H. K., senior consultant gastroenterologist, Narayana Health City, Bengaluru, any symptoms like chronic diarrhoea, blood in stool, or abdominal pain lasting more than four weeks warrant referral to a higher centre for colonoscopy and early diagnosis and proper counselling are key to managing complications and improving outcomes.

IBD care challenges in India

According to the authors of a recent Lancetstudy titled ‘Developing IBD counsellors in low- and middle-income countries: bridging gaps in patient care,’ hospital-based studies confirm a surge in ulcerative colitis — a type of IBD that causes inflammation and ulcers in the large intestine (colon) and rectum, cases in India.

Crohn’s disease, a type of IBD that can affect any part of the digestive tract, from the mouth to the anus though less-frequently documented, is often misdiagnosed due to lack of awareness and limited infrastructure.

By 2025, the country is projected to have only 4,200 gastroenterologists for a population of 1.45 billion — roughly 0.29 gastroenterologists per 1,00,000 people. In comparison, the United States had 3.9 gastroenterologists per 1,00,000 people as early as 2007 — over 13 times higher than the current projected ratio.

This shortage leads to rushed consultations, delayed diagnoses, and inadequate time for patient education. Many IBD cases are mistaken for irritable bowel syndrome or infections, resulting in inappropriate treatments.

Dr. Nandish also explains that misinformation around dietary triggers and treatment options further complicates disease management and causes emotional distress for patients and families.

Do Western models fall short and why?

India’s current clinical protocols often mirror Western models that emphasise individual autonomy in decision-making. However, these approaches don’t always resonate in the Indian context, where healthcare decisions are often made collectively within families.

Arshia Bhardwaj, senior resident, department of Gastroenterology, Dayanand Medical College, Ludhiana, and co-author of the Lancet study explains, “In India, IBD care is not just about the individual. Family members — parents, siblings, even children — influence medical choices. We’ve had patients decline biologics (a form of treatment) because a family member objected.” Without acknowledging this cultural dynamic, healthcare delivery remains incomplete.

Time constraints, language barriers, and a lack of culturally nuanced communication contribute to a disconnect between doctors and patients. “Many believe IBD is caused by food or stress. Without time to debunk these myths, we lose patient trust,” says Dr. Bhardwaj.

Need for IBD care counsellors in India

To bridge these gaps, experts advocate for the introduction of IBD counsellors — healthcare professionals trained specifically in the medical, psychological, nutritional, and social dimensions of IBD in India. Unlike general counsellors or nurses, IBD counsellors would work closely with doctors and families, providing consistent, culturally appropriate support.

“These counsellors could be game changers,” says Arshdeep Singh , associate professor, Department of Gastroenterology, Dayanand Medical College, Ludhiana and co-author. “They can explain treatment plans, address fears about medication, offer basic dietary guidance, and provide emotional support in a way busy doctors often can’t,” Dr. Singh says.

IBD counsellors can also play a vital role in dismantling stigma, correcting misinformation, and ensuring follow-up care — especially in rural and semi-urban regions where access to specialists is minimal and traditional beliefs often dominate

Focus on culturally sensitive solutions

Talking about the steps from diagnosis to treatment, Dr. Bhardwaj also emphasises the need for specialised care. She notes that while colonoscopy is a crucial diagnostic tool, it is not the only one — and without proper interpretation and follow-up by specialists trained in IBD, many patients remain confused or misinformed about their condition. And so, given the strain on India’s healthcare system, training IBD counsellors presents a scalable and cost-effective solution.

Talking about funding and calling for a stand-alone national IBD programme, the authors also notes that this change can be gradual and patient centric. “This isn’t about building more hospitals overnight,” Dr. Bhardwaj explains. “It’s about redesigning what already exists. If even one person in each clinic can take on this role, outcomes could improve dramatically.”

The idea is to create a support system that respects India’s unique cultural fabric while addressing the complexities of chronic disease care. With the number of general practitioners declining and tertiary centers overwhelmed, the IBD counsellor could become a critical link in India’s healthcare chain — in most regions across the country.