参考文献

参考文献

[1]Oh J,Vidal-Jordana A,Montalban X.Multiple sclerosis:clinical aspects[J].Current Opinion in Neurology,2018,31(6):752-759.

[2]邱伟,徐雁.多发性硬化诊断和治疗中国专家共识(2018版)[J].中国神经免疫学和神经病学杂志,2018,25(6):387-394.

[3]全超,吴家勇,许勇峰,等.多发性硬化的规范化评估:泛长三角多发性硬化诊疗协作组专家建议(2023)[J].中国临床神经科学,2023,31(3):241-251.

[4]Caparó-Zamalloa C,Velásquez-Rimachi V,Mori N,et al.Clinical pathway for the diagnosis and management of patients with relapsing-remitting multiple sclerosis:a first proposal for the peruvian population[J].Frontiers in Neurology,2021,12:667398.

[5]Hobart J,Bowen A,Pepper G,et al.International consensus on quality standards for brain health-focused care in multiple sclerosis[J].Multiple Sclerosis,2019,25(13):1809-1818.

[6]Ghezzi A.European and American guidelines for multiple sclerosis treatment[J].Neurology and Therapy,2018,7(2):189-194.

[7]Thompson AJ,Banwell BL,Barkhof F,et al.Diagnosis of multiple sclerosis:2017 revisions of the McDonald criteria[J].Lancet Neurology,2018,17(2):162-173.

[8]Schwenkenbecher P,Wurster U,Konen FF,et al.Impact of the McDonald criteria 2017 on early diagnosis of relapsing-remitting multiple sclerosis[J].Frontiers in Neurology,2019,15(10):188.

[9]Brownlee WJ,Hardy TA,Fazekas F,et al.Diagnosis of multiple sclerosis:progress and challenges[J].Lancet,2017,389(10076):1336-1346.

[10]Mobasheri F,Jaberi AR,Hasanzadeh J,et al.Multiple sclerosis diagnosis delay and its associated factors among Iranian patients[J].Clinical Neurology and Neurosurgery,2020,199(1):106278.

[11]Khedr EM,El Malky I,Hussein HB,et al.Multiple sclerosis diagnostic delay and its associated factors in Upper Egyptian patients[J].Scientific Reports,2023,13(1):2249.

[12]Ghafari S,Fallahi-Khoshknab M,Norouzi K,et al.Experiences of hospitalization in patients with multiple sclerosis:A qualitative study[J].Iranian Journal of Nursing&Midwifery Research,2014,19(3):255-261.

[13]Verónica Cabreira,Abreu P,Maia C,et al.Trends in hospital readmissions in multiple sclerosis patients between 2009 and 2015[J].Multiple Sclerosis and Related Disorders,2020,45:102396.

[14]Mendizabal A,Thibault DP,Crispo JA,et al.Comorbid disease drives short-term hospitalization outcomes in patients with multiple sclerosis[J].Neurology:Clinical Practice,2020,10(3):255-264.

[15]Padarti A,Amritphale A,Kilgo W.Readmission rates in patients with multiple sclerosis:a nationwide cohort study[J].International Journal of MSCare,2022,24(5):218-223.

[16]Scolding N,Barnes D,Cader S,et al.Association of British Neurologists:revised(2015)guidelines for prescribing disease-modifying treatments in multiple sclerosis.[J].Practical Neurology,2015,15(4):273.(https://www.daowen.com)

[17]Khan F,Amatya B.Rehabilitation in multiple sclerosis:a systematic review of systematic reviews[J].Archives of Physical Medicine&Rehabilitation,2017,98(2):353-367.

[18]Duan H,Jing Y,Li Y,et al.Rehabilitation treatment of multiple sclerosis[J].Frontiers in Immunology,2023,14:1168821.

[19]MS International Federation.MS Rehabilitation[EB/OL].(2021-10-26)[2023-08-11].https://www.msif.org/living-with-ms/rehabilitation/.

[20]Soler B,Raats J,Abasiyanik Z,et al.Systematic evaluation of the guidelines for rehabilitation in multiple sclerosis patients:an overview according to ICF functioning domains[J].International Journal of Rehabilitation Research,2021,44(4):289-297.

[21]Thompson A,Kobelt G,Berg J,et al.New insights into the burden and costs of multiple sclerosis in Europe:results for the United Kingdom[J].Multiple Sclerosis,2017,23(2_suppl):204-216.

[22]Rajachandrakumar R,Finlayson M.Multiple sclerosis caregiving:A systematic scoping review to map current state of knowledge[J].Health&social care in the community,2022,30(4):e874-e897.

[23]Penchansky R,Thomas JW.The concept of access:definition and relationship to consumer satisfaction[J].Medical Care,1981,19(2):127-140.

[24]Saurman,E.Improving access:modifying Penchansky and Thomas's Theory of Access[J].Journal of Health Services Research&Policy,2016,21(1):36.

[25]Clement S,Brohan E,Jeffery D,et al.Development and psychometric properties the barriers to access to care evaluation scale(BACE)related to people with mental ill health[J].Bmc Psychiatry,2012,12(1):36.

[26]Bauer MS,Williford WO,Mcbride L,et al.Perceived barriers to health care access in a treated population.[J].International Journal of Pharmaceutics,2005(1):35.

【注释】

[1]应用于患者复发后或失去某种行为能力时。例如,当患者双腿力量减弱时,物理治疗可以通过抵抗性锻炼帮助改善力量和控制能力;痉挛和肌肉僵硬可以通过物理拉伸等来缓解。

[2]部分多发性硬化患者可能会出现言语和吞咽问题,治疗师会对其唇部、喉咙、舌头和喉部进行全面评估,以确定主要问题,进而采用策略纠正这些问题。

[3]侧重于培养和恢复与日常生活相关的技能,例如洗漱、穿衣、烹饪、行走、写作、上班或参与社交与休闲活动。

[4]提供服务、支持和培训,使多发性硬化患者能够得到工作机会、保持或提升工作能力。

[5]针对多发性硬化(MS)患者的心理咨询不仅仅是倾听和提供建议,还可以帮助应对MS带来的不确定性和不可预测性。