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

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.

PMID: 36561489
PMCID: PMC9763562
DOI: 10.3389/fped.2022.923497

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

Yuzaburo Inoue et al. Front Pediatr. 2022.

. 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.

PMID: 36561489
PMCID: PMC9763562
DOI: 10.3389/fped.2022.923497

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.

PubMed Disclaimer

Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Cited by

Self-care in children and young people with complex chronic conditions: a qualitative study using Emotional Text Mining.
Spitaletta G, Biagioli V, Greco F, Mascolo R, Liburdi A, Manzi G, Gawronski O, Ricci R, Tiozzo E, Vellone E, Grimaldi Capitello T, Salata M, Raponi M, Dall'Oglio I; Self-care CYP Study Group. Spitaletta G, et al. Front Pediatr. 2023 Jul 28;11:1170268. doi: 10.3389/fped.2023.1170268. eCollection 2023. Front Pediatr. 2023. PMID: 37576150 Free PMC article.
Challenges and opportunities in transitional care process in Behçet's syndrome.
Di Cianni F, Mastrolia MV, Biancalana E, Marinello D, Emmi G, Mosca M, Simonini G, Talarico R. Di Cianni F, et al. Front Med (Lausanne). 2024 Sep 18;11:1456063. doi: 10.3389/fmed.2024.1456063. eCollection 2024. Front Med (Lausanne). 2024. PMID: 39359917 Free PMC article.

References

1. Pape L, Ernst G. Health care transition from pediatric to adult care: an evidence-based guideline. Eur J Pediatr. (2022) 181(5):1951–8. 10.1007/s00431-022-04385-z - DOI - PMC - PubMed
1. Gabriel P, McManus M, Rogers K, White P. Outcome evidence for structured pediatric to adult health care transition interventions: a systematic review. J Pediatr. (2017) 188:263–9.e15. 10.1016/j.jpeds.2017.05.066 - DOI - PubMed
1. Schmidt A, Ilango SM, McManus MA, Rogers KK, White PH. Outcomes of pediatric to adult health care transition interventions: an updated systematic review. J Pediatr Nurs. (2020) 51:92–107. 10.1016/j.pedn.2020.01.002 - DOI - PubMed
1. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal M. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. (2002) 110(6 Pt 2):1304–6. 10.1542/peds.110.S3.1304 - DOI - PubMed
1. Arnett JJ. Emerging adulthood. A theory of development from the late teens through the twenties. Am Psychol. (2000) 55(5):469–80. 10.1037/0003-066X.55.5.469 - DOI - PubMed

LinkOut - more resources

Full Text Sources

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Similar articles

Cited by

References

LinkOut - more resources

Full Text Sources