患者会・難病相談支援センター・大学からなる「にいがた難病パートナーシップ（NNP）」メンバーを対象にしたPeople-Centered Care パートナーシップ尺度（PCCN-16）を用いた調査

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  • A survey using the People-Centered Care Partnership Scale (PCCN-16) of the constituent members from patient associations, consultation support centers for intractable diseases, and universities of the NIIGATA-NANBYO-Partnership (NNP)

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Abstract

This study aimed to describe the situation regarding People-Centered Care (PCC) in the first year of activity of the Niigata Partnership for Intractable Diseases (NIIGATA-NANBYO-Partnership: NNP). The NNP, active since 2019. consists of patient associations, incurable disease consultation support centers, and universities. We employed a questionnaire survey of NNP members using the People-Centered Care Partnership Scale (PCCN-16). There were 38 valid responses (90.5%), and the total PCCN-16 score ranged from 43 to 80, with a mean score of 70.1. Comparison of PCC scores by subject (t-test) showed that the Patients' Association (PA) group scored significantly higher than the other groups in Factor 6, "Overcoming challenges together," and Factor 7, "Sharing decision-making," which were necessary to solve problems in the management of the PA. The free comments included the following: the PA's concerns, positive experience of working together, increased level of activities, increased awareness and satisfaction of being a member of NNP, and advantages of working as a trio. It is important to disseminate the concept of PCC by holding frequent PCC study sessions, maintain close communication and encourage working as equals among all stakeholders, and continue documenting and evaluating the status of PCC in NNP.

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