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Article History

Received: 29 May 2025

Accepted: 29 September 2025

First Online: 3 November 2025

Declarations

:

: Ziwen Zhao, Zhao Shi, Lei Dou, Chaofan Li, and Shunping Li have no conflicts of interest that are directly relevant to the content of this article.

: This study involves human participants and this study was screened and approved by the Ethics Committee of the Centre for Health Management and Policy Research of Shandong University (No. ECSHCMSDU20230403 for SMA; No. ECCHMPSDU20210101 for PNH). All participants gave their informed consent by signing the consent form. All participants were free to quit at any time and at any stage of this research. Sensitive personal information such as patient identification numbers and names was strictly protected.

: Informed consent was obtained from all individual participants included in the study.

: Not applicable.

: Data are available upon reasonable request.

: The codes are available upon request to the corresponding author.

: CFL and SPL are the co-guarantors of the article’s content. CFL and SPL contributed significantly to the conceptualization and design of the study. CFL, SPL, and ZS also participated in the revision of the manuscript. LD and ZWZ were responsible for the questionnaire survey and data acquisition. ZWZ and CFL conducted the data analysis and contributed to drafting the manuscript. All authors approved the final version of the manuscript and are accountable for the accuracy of the published content.