Challenges facing children with neurogenic lower urinary tract dysfunction in India

Despite significant progress in healthcare, spina bifida, and other high-risk neurogenic lower urinary tract dysfunctions (nLUTD) such as anorectal malformation, remain common in India. Spina bifida has a prevalence of 4.1 per 1000 births, one of the highest globally.[1] The absence of preconception folate supplementation, inadequate antenatal screening, and lack of a standardized public health system, are the significant contributing factors. Furthermore, the limited awareness of nLUTD and the functional urology services continues to result in chronic kidney disease within this population which can be prevented and these children also face several socioeconomic and health-care challenges.

The Urological Society of India has 5946 registered members (including trainees), translating to about 4.2 urologists per million people.[2] Only about 5% of these urologists have a specific interest in, and membership with, the Functional and Female Urology Section (FFUS), representing just one functional urologist per 4.7 million people.[2] This might partly explain why, despite the widespread availability of urodynamics in India,[3] many children still present with established chronic kidney disease.

These children often remain outside the schooling system. A study found that only one in eight children with special needs in India stayed within the formal schooling system, with dropouts particularly common after the fifth standard.[4] Schools are often reluctant to admit students with disabilities, and parents may find the logistics challenging.[5] This is unfortunate since most children with spina bifida have normal intelligence and hand function, allowing them to be employed and become financially independent and socially productive. However, schools in India are seldom disabled-friendly, with access to schools, classrooms, and toilets being particularly formidable.

Physical disability carries immense social stigma in India and is often regarded as the result of bad karma in a previous life.[6] This can lead to additional agony for both the child and the family, resulting in a reluctance to allow social exposure and depriving such children from the vital peer interaction. These issues, along with their original medical condition, can result in poor mental health, which is further stigmatized, leaving families reluctant to seek formal support from a mental health professional.

The economic challenges of caring for a disabled child can be daunting. There is no targeted national healthcare program for such children. Public healthcare systems have numerous other priorities, and outpatient care for children with nLUTD is not high-up on the list. Intermittent catheterization, antimuscarinic medication, salvage therapies with botulinum toxin, augmentation cystoplasty, or renal transplantation can all be expensive. Adding physiotherapy, special schooling, and associated medical needs can further increase these costs.

Public spaces often overlook the needs of such children. Cities have inadequate pavements, and the available ones are challenging even for the able-bodied. Public buildings, transportation systems, shopping areas, and offices rarely consider the needs of these children. Is it any surprise that these children are rarely seen in the public? Although the persons with disabilities act was passed in 2016,[7] just 3% of the government buildings[8] and 7.8% of the buses have been noted to be disabled-friendly.[9]

However, there are some reasons for hope. There is much greater awareness of the needs of such children in the recent times. The FFUS has initiated several public education activities and partnered with other stakeholders and nLUTD patient support groups. Simplified YouTube videos for public education are available on the FFUS channel.[10] Concerted efforts have been made to sensitize other urologists and trainees in managing these children. Several steps have also curtailed the healthcare costs. Reuse of the catheters is now a standard practice across almost all the centers in India, and most of the data suggests that adverse effects on the outcomes, if at all, are minor, and reusing the catheter also has a positive impact on the health-care costs and the environment. Antimuscarinic medication is much cheaper in India, as are most of the health-care interventions.[11] Complex surgical reconstructions and transplantations are now being performed at several publicly funded centers of excellence, with some procedures covered under the nationalized health scheme, “Ayushman Bharat.”[12] While these initiatives do not replace a good public health-care system, they do help mitigate some of its shortcomings. Industrial entities have also made affirmative action policies that can help meet the future needs of these children. Ultimately, the challenges faced by the children with nLUTD in India can only be fully addressed from a national perspective, rather than through the narrow scope of a functional urology condition.

Footnote

The author is Associate Editor of the Indian Journal of Urology and National Chair for the Functional and Female Section of the Urological Society of India.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.