When Correction is Not Completion: Cross Year Loss to Follow-Up in Clubfoot Programme: A Registry Based Study in Indonesia
This registry-based study in Indonesia reveals that cross-year loss to follow-up in the Ponseti clubfoot programme significantly exceeds regional benchmarks, particularly during the bracing phase, and is driven by systemic programme-level failures rather than specific patient characteristics, necessitating universal retention strategies over targeted interventions.
Original paper licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). This is an AI-generated explanation of the paper below. It is not written or endorsed by the authors. For technical accuracy, refer to the original paper. Read full disclaimer
Every year, roughly one in a thousand babies is born with a foot that turns inward and downward, a condition known as clubfoot. For decades, doctors have known how to fix this. A gentle, non-surgical approach called the Ponseti method uses a series of casts to slowly straighten the foot over a few months. This part of the treatment works remarkably well, and in most cases, the foot looks normal by the time the child is a toddler. However, the medical work is not finished when the casts come off. To keep the foot from twisting back into its original position, the child must wear a special brace, usually consisting of shoes connected by a bar, for nearly twenty-three hours a day for three months, and then mostly at night until the child is four or five years old. This long period of wearing the brace is where the real challenge lies. If a family stops bringing the child to the clinic or stops putting the brace on, the foot can slowly deform again, undoing years of careful work and potentially leaving the child with a painful, stiff foot that requires difficult surgery later in life.
A team of researchers in Indonesia set out to understand why so many families stop coming for these follow-up visits. They looked at eight years of records from a single orthopaedic hospital in East Java, tracking 124 children who began treatment for clubfoot between 2016 and 2024. The researchers wanted to see exactly when and why these families disappeared from the medical system. They found that the problem was not with the initial casting phase, where doctors are present and guiding the process. Instead, the vast majority of children who were lost to follow-up dropped out during the brace-wearing phase, which happens at home and relies on the family's daily effort. In fact, nearly all of the children who stopped coming were lost during this long, home-based period, while very few were lost while they were still in the hospital getting their casts changed.
The study revealed that the rate at which families stopped coming was higher than the average seen in similar low-income countries around the world. When the researchers looked at the data year by year, they saw that the problem was not limited to a specific type of family or a specific age of the child. While they initially thought that families who received financial help from a corporate sponsorship program might be more likely to drop out because they faced other hardships like travel costs, the data showed that the issue was much broader. The most significant factor was simply the year the family started treatment. Families who began treatment in the earlier years of the study were much more likely to stop coming than those who started in later years, suggesting that the hospital itself improved its methods for keeping families engaged over time. However, even with these improvements, the rate of dropouts remained stubbornly high.
The researchers also examined how the global pandemic affected these families. During the strict lockdowns in 2020, the number of clinic visits dropped dramatically, falling by nearly ninety percent at the lowest point. While some families returned once restrictions eased, many did not come back the following year, showing that a break in the routine of care can be very difficult to repair. The study concluded that losing a child to follow-up is not just a matter of a family forgetting an appointment or being too busy. It is a systemic failure of the programme to keep families connected during the long, difficult years of home care. The data suggests that simply telling families to come back is not enough. To truly cure the condition, the medical system needs to build a structure that actively reaches out to families, helps them manage the daily burden of the brace, and ensures that no child is left behind simply because the treatment moved from the hospital to the home.
Drowning in papers in your field?
Get daily digests of the most novel papers matching your research keywords — with technical summaries, in your language.