Current status and influencing factor analysis of decision-making conflicts regarding disease-modifying therapies in adult-type spinal muscular atrophy patients_West China Medical Journal

Authors：

HU Linxue , YI Xiaojiang , GAO Xia , LIANG Yan ,  CHEN Dezhi

Department of Neurology, West China Hospital, Sichuan University, Chengdu, Sichuan 610041, P. R. China;

Corresponding?author：

CHEN Dezhi, Email: 737238683@qq.com

Keywords：

Adult-type; spinal muscular atrophy; disease-modifying therapy; decision conflict; influencing factors

DOI：

10.7507/1002-0179.202511348

Video：

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Objective To investigate the current status and influencing factors of decision conflict regarding disease-modifying therapy in patients with spinal muscular atrophy (SMA), aiming to provide references for future interventions to improve the quality of patient decision-making. Methods Using convenience sampling, SMA patients admitted to the Department of Neurology, West China Hospital of Sichuan University between January 2023 and October 2025 were selected as study participants. Data were collected through questionnaires assessing general demographic characteristics, the Control Preferences Scale, and the Decisional Conflict Scale (DCS). Univariate analysis and multiple linear regression were employed to explore factors influencing patients’ decisional conflict. Results A total of 70 questionnaires were distributed, with 66 valid responses returned, resulting in an effective response rate of 94.3%. The standardized DCS score of SMA patients was 35.61±21.28, indicating moderate decisional conflict. Multiple linear regression analysis revealed that age [unstandardized partial regression coefficient (b)=?0.818, 95% confidence interval (?1.383, ?0.252), P=0.005] and residential location [b=?12.660, 95% confidence interval (?19.822, ?5.498), P=0.001] were independent influencing factors for decisional conflict, collectively explaining 35.0% of the variance (adjusted R²=0.318). Conclusions SMA patients exhibit moderate levels of disease-modifying therapy-related decisional conflict, with younger age and rural residence associated with more pronounced conflict. Clinical practice should focus on individual patient characteristics while enhancing decision aids and informational support to help reduce decisional uncertainty.

Citation： HU Linxue, YI Xiaojiang, GAO Xia, LIANG Yan, CHEN Dezhi. Current status and influencing factor analysis of decision-making conflicts regarding disease-modifying therapies in adult-type spinal muscular atrophy patients. West China Medical Journal, 2026, 41(1): 33-37. doi: 10.7507/1002-0179.202511348 Copy

1.	北京醫學會罕見病分會, 北京醫學會醫學遺傳學分會, 北京醫學會神經病學分會神經肌肉病學組, 等. 脊髓性肌萎縮癥多學科管理專家共識. 中華醫學雜志, 2019, 99(19): 1460-1467.
2.	Mercuri E, Finkel RS, Muntoni F, et al. Diagnosis and management of spinal muscular atrophy: Part 1: recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscul Disord, 2018, 28(2): 103-115.
3.	中華醫學會醫學遺傳學分會遺傳病臨床實踐指南撰寫組. 脊髓性肌萎縮癥的臨床實踐指南. 中華醫學遺傳學雜志, 2020, 37(3): 263-268.
4.	中國研究型醫院學會罕見病分會, 中國罕見病聯盟, 北京罕見病診療與保障學會, 等. 青少年成人脊髓性肌萎縮癥臨床診療指南. 罕見病研究, 2023, 2(1): 70-84.
5.	劉珊, 熊暉. 脊髓性肌萎縮癥的疾病修正治療. 中華實用兒科臨床雜志, 2023, 38(6): 465-468.
6.	Janis IL, Mann L. Decision making: a psychological analysis of conflict, choice, and commitment. New York: Free Press, 1977.
7.	廖宗峰, 金迪, 梅翠紅, 等. 患者決策沖突的研究進展. 護理學雜志, 2018, 33(12): 106-109.
8.	Heirman AN, Arends CR, de Jel DVC, et al. Decisional conflict and decision regret in head and neck oncology: a systematic review and meta-analysis. JAMA Otolaryngol Head Neck Surg, 2024, 150(5): 393-404.
9.	O’Connor AM. Validation of a decisional conflict scale. Med Decis Making, 1995, 15(1): 25-30.
10.	王露, 陳英, 崔金銳, 等. 中文版決策沖突量表在直腸癌患者術式決策中應用的信效度檢驗. 護理學雜志, 2019, 34(3): 31-34.
11.	Degner LF, Sloan JA, Venkatesh P. The control preferences scale. Can J Nurs Res, 1997, 29(3): 21-43.
12.	徐小琳. 患者對醫療決策參與的滿意度量表的編制及信效度考評. 長沙: 中南大學, 2010.
13.	Heirman AN, de Kort DP, Petersen JF, et al. Decisional conflict in patients with advanced laryngeal carcinoma: a multicenter study. Laryngoscope, 2024, 134(8): 3604-3610.
14.	Sweeney J, Tichnell C, Christian S, et al. Characterizing decision-making surrounding exercise in ARVC: analysis of decisional conflict, decisional regret, and shared decision-making. Circ Genom Precis Med, 2023, 16(6): e004133.
15.	毛姍姍, 馮藝杰, 徐璐, 等. 諾西那生鈉修正治療兒童脊髓性肌萎縮癥隨訪分析. 中華兒科雜志, 2022, 60(7): 688-693.
16.	諸丹蕙, 顏悅, 毛姍姍. 兒童脊髓性肌萎縮癥的疾病修正治療進展. 臨床藥物治療雜志, 2025, 23(9): 8-14.
17.	張青月, 張秀麗, 王燕, 等. 即刻乳房再造乳腺癌患者決策沖突與人格特質的調查. 中國實用護理雜志, 2024, 40(19): 1484-1490.
18.	Liao YL, Wang TJ, Su CW, et al. Efficacy of a decision support intervention on decisional conflict related to hepatocellular cancer treatment: a randomized controlled trial. Clin Nurs Res, 2023, 32(1): 233-243.
19.	郭紅濤, 張靜, 李穎, 等. 共享決策輔助方案對白血病患兒父母決策沖突與疾病不確定感的影響. 護理研究, 2023, 37(12): 2227-2232.
20.	張涵, 吳志新, 朱雪萍. 脊髓性肌萎縮癥的臨床特征及基因治療研究進展. 中華神經醫學雜志, 2025, 24(3): 293-298.
21.	Yuan X, Yang Y, Wang C, et al. Decision-making conflicts regarding hematopoietic stem cell transplantation in patients with hematological neoplasms: a descriptive qualitative study. Eur J Oncol Nurs, 2024, 72: 102684.

1. 北京醫學會罕見病分會, 北京醫學會醫學遺傳學分會, 北京醫學會神經病學分會神經肌肉病學組, 等. 脊髓性肌萎縮癥多學科管理專家共識. 中華醫學雜志, 2019, 99(19): 1460-1467.
2. Mercuri E, Finkel RS, Muntoni F, et al. Diagnosis and management of spinal muscular atrophy: Part 1: recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscul Disord, 2018, 28(2): 103-115.
3. 中華醫學會醫學遺傳學分會遺傳病臨床實踐指南撰寫組. 脊髓性肌萎縮癥的臨床實踐指南. 中華醫學遺傳學雜志, 2020, 37(3): 263-268.
4. 中國研究型醫院學會罕見病分會, 中國罕見病聯盟, 北京罕見病診療與保障學會, 等. 青少年成人脊髓性肌萎縮癥臨床診療指南. 罕見病研究, 2023, 2(1): 70-84.
5. 劉珊, 熊暉. 脊髓性肌萎縮癥的疾病修正治療. 中華實用兒科臨床雜志, 2023, 38(6): 465-468.
6. Janis IL, Mann L. Decision making: a psychological analysis of conflict, choice, and commitment. New York: Free Press, 1977.
7. 廖宗峰, 金迪, 梅翠紅, 等. 患者決策沖突的研究進展. 護理學雜志, 2018, 33(12): 106-109.
8. Heirman AN, Arends CR, de Jel DVC, et al. Decisional conflict and decision regret in head and neck oncology: a systematic review and meta-analysis. JAMA Otolaryngol Head Neck Surg, 2024, 150(5): 393-404.
9. O’Connor AM. Validation of a decisional conflict scale. Med Decis Making, 1995, 15(1): 25-30.
10. 王露, 陳英, 崔金銳, 等. 中文版決策沖突量表在直腸癌患者術式決策中應用的信效度檢驗. 護理學雜志, 2019, 34(3): 31-34.
11. Degner LF, Sloan JA, Venkatesh P. The control preferences scale. Can J Nurs Res, 1997, 29(3): 21-43.
12. 徐小琳. 患者對醫療決策參與的滿意度量表的編制及信效度考評. 長沙: 中南大學, 2010.
13. Heirman AN, de Kort DP, Petersen JF, et al. Decisional conflict in patients with advanced laryngeal carcinoma: a multicenter study. Laryngoscope, 2024, 134(8): 3604-3610.
14. Sweeney J, Tichnell C, Christian S, et al. Characterizing decision-making surrounding exercise in ARVC: analysis of decisional conflict, decisional regret, and shared decision-making. Circ Genom Precis Med, 2023, 16(6): e004133.
15. 毛姍姍, 馮藝杰, 徐璐, 等. 諾西那生鈉修正治療兒童脊髓性肌萎縮癥隨訪分析. 中華兒科雜志, 2022, 60(7): 688-693.
16. 諸丹蕙, 顏悅, 毛姍姍. 兒童脊髓性肌萎縮癥的疾病修正治療進展. 臨床藥物治療雜志, 2025, 23(9): 8-14.
17. 張青月, 張秀麗, 王燕, 等. 即刻乳房再造乳腺癌患者決策沖突與人格特質的調查. 中國實用護理雜志, 2024, 40(19): 1484-1490.
18. Liao YL, Wang TJ, Su CW, et al. Efficacy of a decision support intervention on decisional conflict related to hepatocellular cancer treatment: a randomized controlled trial. Clin Nurs Res, 2023, 32(1): 233-243.
19. 郭紅濤, 張靜, 李穎, 等. 共享決策輔助方案對白血病患兒父母決策沖突與疾病不確定感的影響. 護理研究, 2023, 37(12): 2227-2232.
20. 張涵, 吳志新, 朱雪萍. 脊髓性肌萎縮癥的臨床特征及基因治療研究進展. 中華神經醫學雜志, 2025, 24(3): 293-298.
21. Yuan X, Yang Y, Wang C, et al. Decision-making conflicts regarding hematopoietic stem cell transplantation in patients with hematological neoplasms: a descriptive qualitative study. Eur J Oncol Nurs, 2024, 72: 102684.

West China Medical Journal

Current status and influencing factor analysis of decision-making conflicts regarding disease-modifying therapies in adult-type spinal muscular atrophy patients

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