Journal of Pediatric Cardiology and Cardiac Surgery

The majority of patients with congenital heart disease reach adult age nowadays thanks to great strides in treatments of cardiac malformations. It is undoubtedly essential for them not only to survive in a reasonably good shape but also to act as an independent member of the society. We need to contemplate this issue. Their current health conditions are greatly affected by their preceding lifestyle, and at the same time surely influencing their quality of life thereafter.

In this respect, the article by Shinbara et al is a unique report accepted as secondary publication.¹⁾ Their institute is a high-volume center in Japan. They investigated adult patients with tetralogy of Fallot (a mean age 28.3 years old) in terms of how socially independent they are and how they live daily. Needless to say, this disease is the commonest cyanotic heart malformation. The authors analyzed patients’ circumstances in the light of Physical Disability Certificate of our country; whether a patient had a Certificate or not, and its grade if qualified. This national health system is described in detail on the homepage of Ministry of Health, Labour, and Welfare of Japan.²⁾

In the present article, the group of patients with Physical Disability Certificate qualified was compared to the group of those without.¹⁾ The pulmonary arteries required reoperation more frequently in the former group than the latter (67.9% vs 18.6%, p<0.001). Cardiovascular event was commoner, as well as severity of the disease more significant, in the former than the latter. Approximately 40% of patients continued her/his education into university in either of the groups. The ratio between regular employment and non-regular employment was similar, while patients with Physical Disability Certificate worked more often as office staffs rather than other types of job. Medical consultation was accessible and well provided for those with Physical Disability Certificate. On the other hand, they felt insecure at work regarding how much they could achieve and how far they were supported by their colleagues. Such an anxiety tended to incite them to alcohol intake or use of soporific tablets. It is understandably presumed that impediments of their heart disease should be more complicated in patients with Physical Disability Certificate qualified than in those without. Shinbara et al successfully demonstrated that this was the case in a quantitative way. Drinking alcohol and taking sleeping pills are uncharted features which should reflect the social circumstance and the personal stress in their daily lives. The point was well spotted.

Practical arrangement of public support is various up to governmental or cultural background in each nation. In order to promote understanding of the present article by Shinbara et al., we briefly introduce the administrative system for national health service in our country. Japanese government provides universal medical care insurance. Under the insurance system, each patient needs to pay 30% of her/his medical expenses in general, with the exception of infants and the elderly (70 years old and over) in whom 80∼90% of their medical fee is to be covered by the government budget. Admitting that the total amount of such own expense becomes somehow substantial, some programs of further public aid have been set for particular conditions of illness. Under the heading of ‘System of Medical Payment for Services and Supports for Persons with Disabilities’, adult patients (18 years old and over) undergoing surgery are entitled to get self-expense of medical costs reimbursed by public bodies (national and prefectures’) when they are registered persons to whom a physically disabled certificate is issued pursuant to the Law for the Welfare of Physically Disabled Persons, and to whom result is assured by medical service such as an operation, etc. to ease and reduce those disorders.³⁾ In other words, the System of Medical Payment for Services and Supports for Persons with Disabilities is based on a valid Physical Disability Certificate.

It sounds natural, therefore, that reoperation onto the pulmonary arteries was commoner in the group of patients with Physical Disability Certificate than in the group of those without as described in the report by Shinbara et al. The latter group of patients could have undergone pulmonary arterial redo surgery mainly under 18 years of age, although this remains speculative because no description was available in the article. As of March 2024, the System of Medical Payment for Services and Supports for Persons with Disabilities does not require qualified Physical Disability Certificate in persons below 18 years old for reducing self-pay burden of medical costs.

The editorial comments aim to remind the readers that social systems, particularly regarding the health issue, may differ among countries/states. The basic part of Japanese system of medical expense payment was described for supplementing the article by Shinbara et al. The editorial members should be grateful if the readers would find these comments helpful.

Lastly, ‘Health and Welfare Administrative Terminology’ are meticulously translated between English and Japanese on a Web site.⁴⁾