Galvin Miriam, Ryan Padhraig, Maguire Sinead, Heverin Mark, Madden Caoifa, Vajda Alice, Normand Charles, Hardiman Orla
Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College Dublin, Ireland.
Department of Health Policy and Management, Trinity College Dublin, Ireland.
PLoS One. 2017 Jun 22;12(6):e0179796. doi: 10.1371/journal.pone.0179796. eCollection 2017.
Amyotrophic Lateral Sclerosis (ALS) is a devastating neurological condition that requires coordinated, multidisciplinary clinical management. ALS is prone to misdiagnosis as its signs and symptoms may be non-specific, which may prolong patients' journey to multidisciplinary ALS care.
Using chart review and national register data, we have detailed the journey of a national cohort of ALS patients (n = 155) from the time of first symptom to presentation at a multidisciplinary clinic (MDC). Key milestones were analysed, including frequency of consultations, clinical interventions, and associated economic cost.
A majority of patients was male (60%), 65 years of age and over (54%), and had spinal onset ALS (72%). Time from onset of first symptoms to ALS diagnosis was a mean of 15.1 months (median, 11). There was a mean interval of 17.4 months (median 12.5) from first symptoms to arrival at the MDC, and a mean of 4.09 (median, 4) consultations with health care professionals. Electromyography and nerve conduction studies were among the most common interventions. Direct referral by a general practitioner (GP) to a neurologist was associated with reduced cost, but not reduced diagnostic delay. Bulbar ALS was associated with shorter time from symptom onset to diagnosis. Neurologist consultation in the first three consultations was associated with lower costs prior to the ALS clinic attendance but not a shorter time from first symptom to final diagnosis. Mean cost prior to attending the MDC was €3,486 per patient.
Expedited referral to the multidisciplinary ALS clinic would have reduced costs by an estimated €2,072 per patient. Development of a standardised pathway with early referral to neurology of patients with suspected symptoms of ALS could limit unnecessary interventions and reduce cost of care.
肌萎缩侧索硬化症（ALS）是一种严重的神经系统疾病，需要协调的多学科临床管理。由于ALS的体征和症状可能不具有特异性，因此容易被误诊，这可能会延长患者获得多学科ALS护理的时间。
通过病历审查和国家登记数据，我们详细记录了一组全国性ALS患者（n = 155）从首次出现症状到在多学科诊所（MDC）就诊的过程。分析了关键节点，包括会诊频率、临床干预措施及相关经济成本。
大多数患者为男性（60%），年龄在65岁及以上（54%），且为脊髓型ALS（72%）。从首次出现症状到ALS诊断的平均时间为15.1个月（中位数为11个月）。从首次出现症状到抵达MDC的平均间隔时间为17.4个月（中位数为12.5个月），与医疗保健专业人员的平均会诊次数为4.09次（中位数为4次）。肌电图和神经传导研究是最常见的干预措施。由全科医生（GP）直接转诊至神经科医生与成本降低相关，但并未减少诊断延迟。延髓型ALS与从症状出现到诊断的时间较短相关。在前三次会诊中咨询神经科医生与在ALS诊所就诊前成本较低相关，但从首次出现症状到最终诊断的时间并未缩短。在前往MDC之前，每位患者的平均成本为3486欧元。
加快转诊至多学科ALS诊所估计可使每位患者成本降低2072欧元。制定标准化路径，对疑似有ALS症状的患者尽早转诊至神经科，可减少不必要的干预措施并降低护理成本。
