沙特阿拉伯膀胱阴道炎患者坚持使用半胱胺治疗的情况:前瞻性队列研究

IF 2 Q3 PHARMACOLOGY & PHARMACY Pharmacy Pub Date : 2024-08-08 DOI:10.3390/pharmacy12040123
Reem Algasem, Nedaa Zainy, Essam Alsabban, H. Almojalli, Khalid Alhasan, Tariq Ali, Deiter Broering, H. Aleid
{"title":"沙特阿拉伯膀胱阴道炎患者坚持使用半胱胺治疗的情况:前瞻性队列研究","authors":"Reem Algasem, Nedaa Zainy, Essam Alsabban, H. Almojalli, Khalid Alhasan, Tariq Ali, Deiter Broering, H. Aleid","doi":"10.3390/pharmacy12040123","DOIUrl":null,"url":null,"abstract":"Cystinosis is a rare autosomal recessive disorder in which cystine crystals accumulate within the cellular lysosomes, causing damage to multiple organs. Due to challenges with the stringent cysteamine treatment regimen and side effects, adherence is often sub-optimal. This study aimed to assess the level of adherence to cysteamine therapy among cystinosis patients in Saudi Arabia and its impact on their quality of life. Electronic medical record data of 39 cystinosis patients from the Department of Nephrology at King Faisal Specialist Hospital and Research Center in Saudi Arabia were reviewed, and 25 patients were included in this study. Out of the 25 patients included in the final analysis, 64% (n = 16) were female. The mean age was 19.04 years. Almost all patients (23/25, 92%) were on oral IR cysteamine therapy, and 52% (13/25) were on topical cysteamine eye drop treatment. Of the 15 patients who responded to the Morisky Medication Adherence Scale-8 (MMAS-8) questionnaire, only 4 (26.7%) were highly adherent to cysteamine therapy. Most of the respondents (7/15, 46.7%) showed a medium level of treatment adherence. Based on the medication possession ratio for oral cysteamine, only 6 out of 23 patients (26.1%) were found to be 96–100% adherent. For the cysteamine eye drops, only 5/13 patients (38.4%) were 76–95% adherent. The 36-Item Short Form Health Survey (SF-36) used to assess patients’ health-related outcomes showed that their quality of life was affected in the domains of ‘social functioning’ and ‘energy/fatigue.’ Despite a small sample size, this study shows sub-optimal adherence to cysteamine treatment in patients from Saudi Arabia. The possible reasons for low treatment adherence could be a high frequency of administration and treatment-related side effects.","PeriodicalId":30544,"journal":{"name":"Pharmacy","volume":null,"pages":null},"PeriodicalIF":2.0000,"publicationDate":"2024-08-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Adherence to Cysteamine Therapy Among Patients Diagnosed with Cystinosis in Saudi Arabia: A Prospective Cohort Study\",\"authors\":\"Reem Algasem, Nedaa Zainy, Essam Alsabban, H. Almojalli, Khalid Alhasan, Tariq Ali, Deiter Broering, H. Aleid\",\"doi\":\"10.3390/pharmacy12040123\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"Cystinosis is a rare autosomal recessive disorder in which cystine crystals accumulate within the cellular lysosomes, causing damage to multiple organs. Due to challenges with the stringent cysteamine treatment regimen and side effects, adherence is often sub-optimal. This study aimed to assess the level of adherence to cysteamine therapy among cystinosis patients in Saudi Arabia and its impact on their quality of life. Electronic medical record data of 39 cystinosis patients from the Department of Nephrology at King Faisal Specialist Hospital and Research Center in Saudi Arabia were reviewed, and 25 patients were included in this study. Out of the 25 patients included in the final analysis, 64% (n = 16) were female. The mean age was 19.04 years. Almost all patients (23/25, 92%) were on oral IR cysteamine therapy, and 52% (13/25) were on topical cysteamine eye drop treatment. Of the 15 patients who responded to the Morisky Medication Adherence Scale-8 (MMAS-8) questionnaire, only 4 (26.7%) were highly adherent to cysteamine therapy. Most of the respondents (7/15, 46.7%) showed a medium level of treatment adherence. Based on the medication possession ratio for oral cysteamine, only 6 out of 23 patients (26.1%) were found to be 96–100% adherent. For the cysteamine eye drops, only 5/13 patients (38.4%) were 76–95% adherent. The 36-Item Short Form Health Survey (SF-36) used to assess patients’ health-related outcomes showed that their quality of life was affected in the domains of ‘social functioning’ and ‘energy/fatigue.’ Despite a small sample size, this study shows sub-optimal adherence to cysteamine treatment in patients from Saudi Arabia. The possible reasons for low treatment adherence could be a high frequency of administration and treatment-related side effects.\",\"PeriodicalId\":30544,\"journal\":{\"name\":\"Pharmacy\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.0000,\"publicationDate\":\"2024-08-08\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Pharmacy\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.3390/pharmacy12040123\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"PHARMACOLOGY & PHARMACY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Pharmacy","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.3390/pharmacy12040123","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"PHARMACOLOGY & PHARMACY","Score":null,"Total":0}
引用次数: 0

摘要

胱氨酸沉积症是一种罕见的常染色体隐性遗传疾病,胱氨酸晶体在细胞溶酶体内积聚,对多个器官造成损害。由于严格的半胱胺治疗方案和副作用带来的挑战,患者的依从性往往不尽如人意。本研究旨在评估沙特阿拉伯胱氨酸病患者坚持半胱胺治疗的程度及其对生活质量的影响。研究人员查阅了沙特阿拉伯费萨尔国王专科医院和研究中心肾病科 39 名膀胱炎患者的电子病历数据,并将 25 名患者纳入本研究。在纳入最终分析的 25 名患者中,64%(n = 16)为女性。平均年龄为 19.04 岁。几乎所有患者(23/25,92%)都在接受口服IR半胱胺治疗,52%(13/25)的患者在接受局部半胱胺滴眼液治疗。在回答莫里斯基用药依从性量表-8(MMAS-8)问卷的 15 位患者中,只有 4 位(26.7%)高度依从半胱胺治疗。大多数受访者(7/15,46.7%)的治疗依从性处于中等水平。根据口服半胱胺的药物持有率,23 名患者中只有 6 人(26.1%)的治疗依从性在 96-100% 之间。至于半胱胺滴眼液,只有 5/13 名患者(38.4%)的依从性达到 76-95%。用于评估患者健康相关结果的 36 项简表健康调查(SF-36)显示,患者在 "社会功能 "和 "精力/疲劳 "方面的生活质量受到了影响。尽管样本量较小,但本研究显示沙特阿拉伯患者对半胱胺治疗的依从性并不理想。治疗依从性低的原因可能是用药频率高以及与治疗相关的副作用。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
查看原文
分享 分享
微信好友 朋友圈 QQ好友 复制链接
本刊更多论文
Adherence to Cysteamine Therapy Among Patients Diagnosed with Cystinosis in Saudi Arabia: A Prospective Cohort Study
Cystinosis is a rare autosomal recessive disorder in which cystine crystals accumulate within the cellular lysosomes, causing damage to multiple organs. Due to challenges with the stringent cysteamine treatment regimen and side effects, adherence is often sub-optimal. This study aimed to assess the level of adherence to cysteamine therapy among cystinosis patients in Saudi Arabia and its impact on their quality of life. Electronic medical record data of 39 cystinosis patients from the Department of Nephrology at King Faisal Specialist Hospital and Research Center in Saudi Arabia were reviewed, and 25 patients were included in this study. Out of the 25 patients included in the final analysis, 64% (n = 16) were female. The mean age was 19.04 years. Almost all patients (23/25, 92%) were on oral IR cysteamine therapy, and 52% (13/25) were on topical cysteamine eye drop treatment. Of the 15 patients who responded to the Morisky Medication Adherence Scale-8 (MMAS-8) questionnaire, only 4 (26.7%) were highly adherent to cysteamine therapy. Most of the respondents (7/15, 46.7%) showed a medium level of treatment adherence. Based on the medication possession ratio for oral cysteamine, only 6 out of 23 patients (26.1%) were found to be 96–100% adherent. For the cysteamine eye drops, only 5/13 patients (38.4%) were 76–95% adherent. The 36-Item Short Form Health Survey (SF-36) used to assess patients’ health-related outcomes showed that their quality of life was affected in the domains of ‘social functioning’ and ‘energy/fatigue.’ Despite a small sample size, this study shows sub-optimal adherence to cysteamine treatment in patients from Saudi Arabia. The possible reasons for low treatment adherence could be a high frequency of administration and treatment-related side effects.
求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
来源期刊
Pharmacy
Pharmacy PHARMACOLOGY & PHARMACY-
自引率
9.10%
发文量
141
审稿时长
11 weeks
期刊最新文献
Pharmaceutical Advertising and Public Perceptions in Saudi Arabia. Evaluating the Efficiency and Staff Satisfaction of the Point-of-Care IV Activated System Versus Traditional Piggyback in Administering IV Antibiotics at a Saudi Tertiary Hospital. A Review of Survey Instruments and Pharmacy Student Outcomes for Stress, Burnout, Depression and Anxiety. Pharmacist-Prescribed Hormonal Contraception: A Survey of Perceptions of Georgia Community Pharmacists and Non-Community Pharmacists. Pharmacists' Professional Satisfaction and Challenges: A Netnographic Analysis of Reddit and Facebook Discussions.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
已复制链接
已复制链接
快去分享给好友吧!
我知道了
×
扫码分享
扫码分享
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1