Social independence evaluation index for Japanese patients with childhood-onset chronic diseases

Yuzaburo Inoue; Hiroaki Umebayashi; Toshihiro Matsui; Susumu Nishiyama; Ikuho Sakurai; Mitsue Maru; Tetsuro Takeda; Koji Tanigawa; Takako Miyamae

doi:10.3389/fped.2022.923497

Social independence evaluation index for Japanese patients with childhood-onset chronic diseases

Front Pediatr. 2022 Dec 6:10:923497. doi: 10.3389/fped.2022.923497. eCollection 2022.

Authors

Yuzaburo Inoue^{1

2

3}, Hiroaki Umebayashi⁴, Toshihiro Matsui⁵, Susumu Nishiyama⁶, Ikuho Sakurai⁷, Mitsue Maru⁸, Tetsuro Takeda⁹, Koji Tanigawa¹⁰, Takako Miyamae¹¹

Affiliations

¹ Department of General Medical Science, Graduate School of Medicine, Chiba University, Chiba, Japan.
² Department of Pediatrics, Eastern Chiba Medical Center, Togane, Japan.
³ Department of Allergy and Rheumatology, Chiba Children's Hospital, Chiba, Japan.
⁴ Department of General Pediatrics, Miyagi Children's Hospital, Sendai, Japan.
⁵ Department of Rheumatology Research, Clinical Research Center for Allergy and Rheumatology, National Hospital Organization Sagamihara National Hospital, Sagamihara, Japan.
⁶ Rheumatic Disease Center, Kurashiki Medical Center, Kurashiki, Japan.
⁷ Department of Nursing, Faculty of Health Sciences, Saitama Prefectural University, Koshigaya, Japan.
⁸ Child Nursing, College of Nursing Art and Science, University of Hyogo, Akashi, Japan.
⁹ Faculty of Education, Wakayama University, Wakayama, Japan.
¹⁰ Department of Teacher Education, Kobe Shoin Women's University, Kobe, Japan.
¹¹ Pediatric Rheumatology, Institute of Rheumatology, Tokyo Women's Medical University, Tokyo, Japan.

Abstract

Introduction: This study established an independent evaluation index for patients with childhood-onset chronic diseases in Japan.

Methods: From November to December 2020, three Delphi rounds were conducted. Thirty-nine participants completed at least one survey. We asked them about targets of social independence for 10 types of activities (education/labor/finance/acquisition of necessities/housing/transportation/leisure/social relationship/intimate relationships/sexuality). The Delphi technique was to be repeated until a consensus of over 80% of participants was reached.

Results: The targets chosen for measuring independence in patients with childhood-onset chronic diseases were as follows: "Graduation from high school," "Labor for livelihood (including temporary turnover)," "Financially independent (including temporary turnover, excluding students)," "Buy or rent a house and buy the daily necessities and get the public services you need to live," "Do housework alone," "Plan alone and use transportation to get around," "Participate in play/recreation/leisure activities on own initiative," "Engage in relationships with other people outside of a limited environment (home, school, office, hospital, etc.)," "Create and maintain intimate or romantic relationships between individuals (couples, lovers, sexual partners)," and "Use or know how to use contraceptives and how to prevent sexually transmitted diseases."

Conclusions: We established an independent evaluation index for patients with childhood-onset chronic diseases in Japan through a three-round Delphi process. The assessment of social independence using our independent evaluation index may help plan for and provide appropriate support and assistance to these patients.

Keywords: activity; childhood-onset; chronic diseases; delphi technique [MeSH]; disability and health (ICF); international classification of functioning; social independence; social participation (MeSH); transitional care.