Analysis of needs of newly designated "nanbyo",specific diseases patients in the community, living support and health guidance

2022 Fiscal Year Final Research Report

• Project/Area Number: 18K17613
• Research Category: Grant-in-Aid for Early-Career Scientists
• Allocation Type: Multi-year Fund
• Review Section: Basic Section 58080:Gerontological nursing and community health nursing-related
• Research Institution: Asahikawa University
• Principal Investigator: HABARA MINAKO 旭川大学, 保健福祉学部, 教授 (30279434)
• Project Period (FY): 2018-04-01 – 2023-03-31
• Keywords: 指定難病 / ニーズ / 保健指導 / QOL

Outline of Final Research Achievements

This study aims to identify the conditions, needs, and issues in the daily lives of patients with newly designated intractable diseases after the Intractable Disease Act was adopted, and to examine how to interact with patients and how health guidance should be provided. Among patients with designated intractable diseases in Hokkaido, the number of people issued a medical care beneficiary certificate increased while that of applicants for certificates for specific disease treatment who had been covered by the medical benefits before the new act decreased. Half of the new applicants were with autoimmune diseases and genetic predispositions. A questionnaire survey was conducted with intractable disease patients. The quality of life was not low but 90% of patients felt risks and anxiety about COVID-19 infections. This suggests the necessity and importance of health guidance on prevention of transmission by healthcare professionals for patients with intractable diseases.

Free Research Field

地域・高齢者保健　難病保健

Academic Significance and Societal Importance of the Research Achievements

昭和47年につくられた難病対策要綱から約40年の時を経て、2015年には「難病の患者に対する医療に関する法律（難病法）」が成立、施行された。難病対策は変遷し難病研究もまた進んでいるが、法成立以降の難病患者の動向や生活状況全般は公の知るところとなっていない。さらに2019年には、戦後始まって以来の公衆衛生上の課題とまで言われる新型コロナ感染症（COVID-19）が日本でも感染拡大し猛威をふるった。こうした未曾有の感染症流行は、難病患者の生活にどう影響を及ぼしたか、さらにそこへの保健指導の在り方など検討し、今後の難病対策に備えることが社会的に見て重要、かつ有意義であると考えられる。