When a child is diagnosed with inflammatory bowel disease (IBD)—a serious condition affecting the digestive system—families face much more than just medical bills. Researchers in Poland surveyed parents of children with IBD to understand the real financial and emotional toll. They found that families spend significant money on travel to doctors, private medical care, special diets, and medications. Parents also miss work frequently to care for their children, which reduces family income and affects their quality of life. The study shows that these costs go far beyond what many people realize, and highlights why communities need better healthcare access and financial support for these families.

The Quick Take

  • What they studied: How much money and time families spend caring for children with inflammatory bowel disease (a chronic condition causing stomach and intestinal problems)
  • Who participated: Parents of children diagnosed with inflammatory bowel disease at a pediatric hospital in Poland who completed anonymous surveys about their family’s expenses and experiences
  • Key finding: Families spend between $54-$128 USD per month on travel to medical appointments and private doctor visits, and parents frequently miss work to care for their sick children, reducing family income
  • What it means for you: If your child has inflammatory bowel disease, understanding these costs can help you plan financially and seek available support. This research suggests that better access to specialists and financial assistance programs could significantly help families like yours.

The Research Details

Researchers asked parents of children with inflammatory bowel disease to fill out detailed questionnaires about their family’s experiences and expenses. The survey collected information about who was in the family, their income level, and all the costs related to their child’s medical care—including doctor visits, medications, special foods, and travel. The researchers specifically looked at two types of inflammatory bowel disease: ulcerative colitis (which affects the colon) and Crohn’s disease (which can affect any part of the digestive system). They also asked parents about how often they had to miss work to care for their children.

This type of study is called a cross-sectional survey, which means researchers collected information from families at one point in time rather than following them over months or years. The study was conducted at a children’s hospital in Wroclaw, Poland, where researchers had access to families dealing with these conditions.

Understanding the true costs of caring for a child with inflammatory bowel disease is important because it shows the real-world impact on families. Many healthcare systems focus on medical costs but don’t always recognize the hidden expenses like travel and lost work time. By documenting these costs, researchers can help policymakers understand why families need better support and why improving access to specialists in all areas—including remote regions—is so important.

This study provides valuable real-world information from families living with inflammatory bowel disease. The researchers used anonymous surveys, which encourages honest answers about sensitive topics like money. However, the study was conducted in one hospital in Poland, so the results may not apply exactly to other countries with different healthcare systems. The study gives us a snapshot of costs at one point in time rather than tracking families over a longer period, which means we don’t know if costs change over time as children grow or as their condition changes.

What the Results Show

The research revealed substantial financial burdens on families. For travel expenses alone, families with children who have ulcerative colitis spent an average of about $54 USD per month, while families with children who have Crohn’s disease spent approximately $76 USD per month. These costs reflect the need to travel to medical appointments, often at distant hospitals because specialists aren’t available locally.

Private medical care costs were even higher. Because many families couldn’t access pediatric gastroenterologists (doctors who specialize in children’s digestive system diseases) through public healthcare, they turned to private doctors. Families with children who have ulcerative colitis paid an average of about $78 USD per month for private care, while families with children who have Crohn’s disease paid approximately $128 USD per month. These are significant expenses for families already dealing with medical bills.

Beyond the money, parents reported frequent absences from work to care for their children during medical appointments, flare-ups of symptoms, and hospitalizations. These work absences directly reduced family income and created stress about job security. Parents also described emotional strain from managing their child’s condition, worrying about their child’s health, and the challenges of maintaining normal family life while dealing with a chronic illness.

The study also documented costs related to dietary modifications, as many children with inflammatory bowel disease require special diets to manage their symptoms. Families reported purchasing specific foods and sometimes working with nutritionists, adding to their overall expenses. Additionally, the research highlighted that families in remote areas faced even greater challenges because they had to travel farther to reach specialists, increasing both travel costs and time away from work. The study found that limited access to public healthcare services forced families to choose between waiting for appointments in the public system or paying out-of-pocket for faster private care.

This study is important because it provides specific numbers about the costs of caring for children with inflammatory bowel disease in Europe—information that was rarely documented before. Previous research has shown that inflammatory bowel disease is expensive for families, but this study gives concrete monthly costs that help us understand the true burden. The findings align with research from other countries showing that families with children who have chronic diseases face significant financial strain, but this study specifically quantifies the Polish healthcare context.

The study has some important limitations to keep in mind. First, the sample size wasn’t specified in the available information, so we don’t know exactly how many families participated. Second, the study only included families from one hospital in Poland, so the results may not apply to other countries with different healthcare systems or to families in other regions of Poland. Third, the survey was completed at one point in time, so we don’t know if costs change as children age or as their disease progresses. Finally, the study relied on parents’ memory and reporting of expenses, which might not be completely accurate—some families might forget small costs or round numbers.

The Bottom Line

If your child has inflammatory bowel disease, this research suggests several important steps: (1) Look into financial assistance programs and support organizations that help families with chronic childhood illnesses—these may help offset costs. (2) Ask your healthcare provider about accessing care through public healthcare systems when possible, as private care is significantly more expensive. (3) Connect with other families dealing with inflammatory bowel disease to share resources and information about managing costs. (4) Keep detailed records of all medical expenses, as some may be tax-deductible or eligible for reimbursement. Healthcare providers and policymakers should use this research to advocate for better access to pediatric specialists in all areas and for financial support programs for affected families.

This research is most relevant to families with children who have inflammatory bowel disease, particularly those in areas with limited access to specialists. It’s also important for healthcare policymakers, insurance companies, and organizations that support families with chronic illnesses. Parents considering whether their child might have inflammatory bowel disease should know that while the condition requires ongoing medical care and creates financial challenges, support is available. This research is less directly relevant to families whose children don’t have inflammatory bowel disease, though it may help them understand the challenges other families face.

The financial and emotional impacts described in this study are ongoing—they don’t have a specific timeline. Families face these costs and challenges continuously as long as their child has inflammatory bowel disease. However, accessing financial support and improving healthcare access could reduce these burdens relatively quickly. Some families might see improvements in their situation within weeks or months of connecting with support programs or finding better access to care.

Want to Apply This Research?

  • Track monthly medical expenses in specific categories: travel costs, private doctor visits, medications, special foods, and work hours missed. Record the date, category, amount spent, and reason. This creates a clear picture of your family’s actual costs and helps identify where support might be most needed.
  • Use the app to set a monthly budget for medical-related expenses and track spending against it. When you identify high-cost areas (like private doctor visits), use the app to research and connect with financial assistance programs or support organizations that might help reduce those specific costs.
  • Review your expense tracking monthly to identify trends and patterns. Note whether certain months have higher costs (perhaps related to disease flare-ups or seasonal factors). Share this data with your healthcare team to help them understand your family’s challenges and work together on solutions. Over time, this tracking helps you advocate for better support and shows the real impact of your child’s condition on your family.

This research describes the financial and emotional challenges families face when caring for children with inflammatory bowel disease. It is not medical advice and should not be used to diagnose or treat any condition. If your child has symptoms of inflammatory bowel disease (such as chronic diarrhea, abdominal pain, or blood in stool), consult with a pediatrician or pediatric gastroenterologist for proper evaluation and treatment. The costs and experiences described in this Polish study may differ from those in other countries or healthcare systems. Always work with your healthcare team to develop a treatment plan appropriate for your child’s specific situation. If you’re struggling with the financial burden of your child’s care, speak with your healthcare provider about available resources and support programs.