Caseby Sophie Clare Laura, Woodhouse Fern Amy, Montgomery Stephen Maxwell, Kroes Michel Anton, Duddy Martin Edward
Market Access Division Costello Medical London UK.
HTA Division Costello Medical Cambridge UK.
Health Sci Rep. 2022 Jan 23;5(1):e474. doi: 10.1002/hsr2.474. eCollection 2022 Jan.
Transition to secondary progressive multiple sclerosis (SPMS) from relapsing-remitting MS (RRMS) is an expected part of the disease trajectory for most patients. However, the transition is challenging to identify due to the gradual nature of progression, and the complications of superimposed relapses, comorbidities, and natural variability in symptoms. This healthcare professional (HCP) survey sought to characterize the transition to and management of SPMS in UK clinical practice.
Telephone interviews with 20 neurologists and MS specialist nurses from England and Scotland gathered quantitative and qualitative responses. Numerical analyses and theoretical thematic methods were used to identify key emerging themes.
The burden SPMS imposes on patients and caregivers was a major theme; discharge from specialist services is common, leading to a sense of abandonment. Respondents acknowledged substantial hesitancy toward identifying SPMS, predominantly due to restricted options of licensed and reimbursed disease-modifying therapies (DMTs) for SPMS compared with RRMS. Currently, HCPs continue DMTs under a label of RRMS, even after recognition of progression. This survey identified MS to be unusual in comparison with other disease areas in that reimbursement guidelines have a direct impact on clinicians' decisions around disease staging. Respondents suggested reimbursed DMTs proven to slow disability progression in SPMS will create a step-change in identifying SPMS, providing rationale to acknowledge progression earlier while removing key obstacles to identification. To aid this change, respondents identified a need for SPMS-specific diagnostic guidance, despite substantial divergence in implementation of current guidance.
In contrast to the current heterogeneity, a more structured and standardized approach to the identification of SPMS, along with guidelines on treatment, will ensure patients can maximally benefit as treatment options for SPMS evolve.
对于大多数复发缓解型多发性硬化症（RRMS）患者而言，病情进展为继发进展型多发性硬化症（SPMS）是疾病发展过程中的一个预期阶段。然而，由于疾病进展具有渐进性，且存在叠加复发、合并症以及症状的自然变异性等复杂情况，因此很难识别病情是否已发生转变。本次医疗保健专业人员（HCP）调查旨在描述英国临床实践中SPMS的病情转变及管理情况。
对来自英格兰和苏格兰的20名神经科医生和多发性硬化症专科护士进行电话访谈，收集定量和定性的反馈意见。采用数值分析和理论主题分析法来确定关键的新出现主题。
SPMS给患者和护理人员带来的负担是一个主要主题；患者通常会从专科服务中出院，从而产生被遗弃感。受访者承认在识别SPMS方面存在很大的犹豫，主要原因是与RRMS相比，SPMS的获批和可报销疾病修饰疗法（DMT）选择有限。目前，即使在认识到病情进展后，医疗保健专业人员仍会在RRMS的标签下继续使用DMT。本次调查发现，与其他疾病领域相比，多发性硬化症的不同寻常之处在于报销指南会直接影响临床医生对疾病分期的决策。受访者表示，经证实能减缓SPMS残疾进展的可报销DMT将在识别SPMS方面带来重大改变，为更早地认识病情进展提供依据，同时消除识别方面的主要障碍。为推动这一变化，受访者认为需要针对SPMS的诊断指南，尽管目前指南的实施存在很大差异。
与目前的异质性情况相反，采用更具结构化和标准化的方法来识别SPMS，并制定治疗指南，将确保随着SPMS治疗选择的不断发展，患者能够最大程度地受益。
