Familial amyloid polyneuropathy: elaboration of a therapeutic patient education programme, “EdAmyl”

References

• Benson MD, Kincaid JC. The molecular biology and clinical features of amyloid neuropathy. Muscle Nerve 2007;36:411–23
   PubMed Web of Science ®Google Scholar
• Coutinho P, Martins Da Silva A, Lopes Lima J, Resende Barbosa A. Forty years of experience with type I amyloid neuropathy. Review of 483 cases. In: Glenner G, Costa P, De Freitas A, eds. Amyloid and amyloidosis. Amsterdam: Excerpta Medica; 1980:88–98
   Google Scholar
• Koike H, Tanaka F, Hashimoto R, Tomita M, Kawagashira Y, Iijima M, Fujitake J, et al. Natural history of transthyretin Val30Met familial amyloid polyneuropathy: analysis of late-onset cases from non-endemic areas. J Neurol Neurosurg Psychiatr 2012;83:152–8
   PubMed Web of Science ®Google Scholar
• Algalarrondo V, Dinanian S, Juin C, Chemla D, Bennani SL, Sebag C, Planté V, et al. Prophylactic pacemaker implantation in familial amyloid polyneuropathy. Heart Rhythm 2012;9:1069–75
   PubMed Web of Science ®Google Scholar
• Adams D, Lozeron P, Lacroix C. Amyloid neuropathies. Curr Opin Neurol 2012;25:564–72
   PubMed Web of Science ®Google Scholar
• Berk JL, Suhr OB, Obici L, Sekijima Y, Zeldenrust SR, Yamashita T, Heneghan MA, et al. Repurposing diflunisal for familial amyloid polyneuropathy: a randomized clinical trial. JAMA 2013;310:2658–67
   PubMed Web of Science ®Google Scholar
• Coelho T, Adams D, Silva A, Lozeron P, Hawkins PN, Mant T, Perez J, et al. Safety and efficacy of RNAi therapy for transthyretin amyloidosis. N Engl J Med 2013;9:819–29
   Google Scholar
• Ackermann EJ, Guo S, Booten S, Alvarado L, Benson M, Hughes S, Monia BP. Clinical development of an antisense therapy for the treatment of transthyretin-associated polyneuropathy. Amyloid 2012;19:43–4
   PubMed Web of Science ®Google Scholar
• Sousa A, Coelho T, Barros J, Sequeiros J. Genetic epidemiology of familial amyloidotic polyneuropathy (FAP)-type I in Póvoa do Varzim and Vila do Conde (north of Portugal). Am J Med Genet 1995;60:512–21
   PubMed Web of Science ®Google Scholar
• Kato-Motozaki Y, Ono K, Shima K, Morinaga A, Machiya T, Nozaki I, Shibata-Hamaguchi A, et al. Epidemiology of familial amyloid polyneuropathy in Japan: identification of a novel endemic focus. J Neurol Sci 2008;270:133–40
   PubMed Web of Science ®Google Scholar
• Sousa A, Andersson R, Drugge U, Holmgren G, Sandgren O. Familial amyloidotic polyneuropathy in Sweden: geographical distribution, age of onset, and prevalence. Hum Hered 1993;43:288–94
   PubMed Web of Science ®Google Scholar
• Adams D, Lozeron P, Theaudin M, Mincheva Z, Cauquil C, Adam C, Signate A, et al. Regional difference and similarity of familial amyloidosis with polyneuropathy in France. Amyloid 2012;19:61–4
   PubMed Web of Science ®Google Scholar
• Le Henanff G, Tchernia G. French experience with rare diseases plans. Orphanet J Rare Dis 2010;5:O7
   PubMedGoogle Scholar
• WHO-Europe Report: therapeutic patient education – continuing education programmes for health care providers in the field of chronic disease; 1996
   Google Scholar
• Clarkesmith DE, Pattison HM, Lip GY, Lane DA. Educational intervention improves anticoagulation control in atrial fibrillation patients: the TREAT randomised trial. PLoS One 2013;8:e74037
   PubMed Web of Science ®Google Scholar
• Lagger G, Pataky Z, Golay A. Efficacy of therapeutic patient education in chronic diseases and obesity. Patient Educ Couns 2010;79:283–6
   PubMedGoogle Scholar
• Daviet JC, Bonan I, Caire JM, Colle F, Damamme L, Froger J, Leblond C, et al. Therapeutic patient education for stroke survivors: non-pharmacological management. A literature review. Ann Phys Rehabil Med 2012;55:641–56
   PubMedGoogle Scholar
• American Association of Diabetes Educators. Healthy eating: incorporating nutritional management into lifestyle. Diabetes Educ 2012;38:124–8
   PubMedGoogle Scholar
• Shah S, Peat JK, Mazurski EJ, Wang H, Sindhusake D, Bruce C, Henry RL, et al. Effect of peer led programme for asthma education in adolescents: cluster randomised controlled trial. BMJ 2001;322:583–5
   PubMed Web of Science ®Google Scholar
• Ennis M, Thain J, Boggild M, Baker GA, Young CA. A randomized controlled trial of a health promotion education programme for people with multiple sclerosis. Clin Rehabil 2006;20:783–92
   PubMed Web of Science ®Google Scholar
• Dufresne H, Hadj-Rabia S, Taïeb C, Bodemer C. Importance of therapeutic patient education in ichthyosis: results of a prospective single reference center study. Orphanet J Rare Dis 2013;8:113
   PubMedGoogle Scholar
• Hansberry DR, Suresh R, Agarwal N, Heary RF, Goldstein IM. Quality assessment of online patient education resources for peripheral neuropathy. J Peripher Nerv Syst 2013;18:44–7
   PubMedGoogle Scholar
• Nakamichi K, Tachibana S, Ida M, Yamamoto S. Patient education for the treatment of ulnar neuropathy at the elbow. Arch Phys Med Rehabil 2009;90:1839–45
   PubMedGoogle Scholar
• Britten N. Qualitative interviews in medical research. BMJ 1995;311:251–3
   PubMed Web of Science ®Google Scholar
• Communier A, Sadki R, Sommerlatte É, Gagnayre R. Quels besoins éducatifs pour des personnes vivant avec le VIH depuis plus de 10 ans? Ther Patient Educ 2010;2:51–62
   Google Scholar
• Spiesser-Robelet L, Rouault A, Prot-Labarthe S, Bourdon O, Oury JF, Brion F, Gagnayre R. Analyse des besoins éducatifs des femmes allaitantes vis-à-vis de la prise de médicaments. Ther Patient Educ 2010;2:25–38
   Google Scholar
• Hervier B, Devilliers H, Amiour F, Ayçaguer S, Neves Y, Ganem MC, Amoura Z, et al. Assessment of patient needs to design a patient education program in systemic lupus erythematosus. Rev Med Interne 2014;35:297–302
   PubMedGoogle Scholar
• Lozeron P, Théaudin M, Mincheva Z, Ducot B, Lacroix C, Adams D; French Network for FAP (CORNAMYL). Effect on disability and safety of Tafamidis in late onset of Met30 transthyretin familial amyloid polyneuropathy. Eur J Neurol 2013;20:1539–45
   PubMed Web of Science ®Google Scholar
• Adams D, Théaudin M, Cauquil C, Algalarrondo V, Slama M. FAP neuropathy and emerging treatments. Curr Neurol Neurosci Rep 2014;14:435
   PubMed Web of Science ®Google Scholar