Patient reported outcome measures (PROMs) in amyotrophic lateral sclerosis
Tóm tắt
Từ khóa
Tài liệu tham khảo
Cella D, Yount S, Rothrock N et al (2007) The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years. Med Care 45:S3–S11
Cella D, Riley W, Stone A et al (2010) The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. J Clin Epidemiol 63:1179–1194
Moura LM, Schwamm E, Moura Junior V et al (2016) Feasibility of the collection of patient-reported outcomes in an ambulatory neurology clinic. Neurology 87:2435–2442
Schaffler N, Schonberg P, Stephan J, Stellmann JP, Gold SM, Heesen C (2013) Comparison of patient-reported outcome measures in multiple sclerosis. Acta Neurol Scand 128:114–121
Heatwole C, Bode R, Johnson N et al (2012) Patient-reported impact of symptoms in myotonic dystrophy type 1 (PRISM-1). Neurology 79:348–357
Heatwole C, Johnson N, Bode R et al (2015) Patient-reported impact of symptoms in myotonic dystrophy type 2 (PRISM-2). Neurology 85:2136–2146
Jacobi H, du Montcel ST, Bauer P et al (2018) Long-term evolution of patient-reported outcome measures in spinocerebellar ataxias. J Neurol 265:2040–2051
Mongiovi P, Dilek N, Garland C et al (2018) Patient reported impact of symptoms in spinal muscular atrophy (PRISM-SMA). Neurology 91:e1206–e1214
Abdulla S, Vielhaber S, Korner S et al (2013) Validation of the German version of the extended ALS functional rating scale as a patient-reported outcome measure. J Neurol 260:2242–2255
Smith RA, Macklin EA, Myers KJ et al (2018) Assessment of bulbar function in amyotrophic lateral sclerosis: validation of a self-report scale (Center for Neurologic Study Bulbar Function Scale). Eur J Neurol 25:907
Stephens HE, Joyce NC, Oskarsson B (2017) National study of muscle cramps in ALS in the USA. Amyotroph Lateral Scler Frontotemporal Degener 18:32–36
Vogt S, Petri S, Dengler R, Heinze HJ, Vielhaber S (2018) Dyspnea in amyotrophic lateral sclerosis (ALS): Rasch-based development and validation of a patient-reported outcome (DALS-15). J Pain Symptom Manage 56:736–745
Cedarbaum JM, Stambler N, Malta E et al (1999) The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). J Neurol Sci 169:13–21
Gordon PH, Miller RG, Moore DH (2004) Alsfrs-R. Amyotroph Lateral Scler Other Motor Neuron Disord 5(Suppl 1):90–93
Andrews JA, Meng L, Kulke SF et al (2018) Association between decline in slow vital capacity and respiratory insufficiency, use of assisted ventilation, tracheostomy, or death in patients with amyotrophic lateral sclerosis. JAMA Neurol 75:58–64
Shefner JM, Liu D, Leitner ML et al (2016) Quantitative strength testing in ALS clinical trials. Neurology 87:617–624
Ludolph A, Drory V, Hardiman O et al (2015) A revision of the El Escorial criteria—2015. Amyotroph Lateral Scler Frontotemporal Degener 16(5–6):291–292
Broderick JE, DeWitt EM, Rothrock N, Crane PK, Forrest CB (2013) Advances in patient-reported outcomes: the NIH PROMIS((R)) measures. EGEMS (Wash DC) 1:1015
Hays RD, Bjorner JB, Revicki DA, Spritzer KL, Cella D (2009) Development of physical and mental health summary scores from the patient-reported outcomes measurement information system (PROMIS) global items. Qual Life Res 18:873–880
Cella D, Lai JS, Nowinski CJ et al (2012) Neuro-QOL: brief measures of health-related quality of life for clinical research in neurology. Neurology 78:1860–1867
Gershon RC, Lai JS, Bode R et al (2012) Neuro-QOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing. Qual Life Res 21:475–486
Knudson RJ, Lebowitz MD, Holberg CJ, Burrows B (1983) Changes in the normal maximal expiratory flow-volume curve with growth and aging. Am Rev Respir Dis 127:725–734
Gibbons C, Pagnini F, Friede T, Young CA (2018) Treatment of fatigue in amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database Syst Rev 1:CD011005
Krupp LB, LaRocca NG, Muir-Nash J, Steinberg AD (1989) The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus. Arch Neurol 46:1121–1123
Paganoni S, Cudkowicz M, Berry JD (2014) Outcome measures in amyotrophic lateral sclerosis clinical trials. Clin Investig (Lond) 4:605–618
Kelly L, Jenkinson C, Morley D (2015) Outcome measurement in neurodegenerative disease: attributes, applications & interpretation. Neurodegener Dis Manag 5:305–316
Dirven L, Taphoorn MJ, Reijneveld JC et al (2014) The level of patient-reported outcome reporting in randomised controlled trials of brain tumour patients: a systematic review. Eur J Cancer 50:2432–2448
Jonsson AC, Delavaran H, Iwarsson S, Stahl A, Norrving B, Lindgren A (2014) Functional status and patient-reported outcome 10 years after stroke: the Lund Stroke Register. Stroke 45:1784–1790
