Participatory medicine and patient empowerment towards personalized healthcare in multiple sclerosis

References

• Weston AD, Hood L. Systems biology, proteomics, and the future of health care: toward predictive, preventative, and personalized medicine. J. Proteome Res.3(2), 179–196 (2004).
   PubMed Web of Science ®Google Scholar
• Auffray C, Charron D, Hood L. Predictive, preventive, personalized and participatory medicine: back to the future. Genome Med.2(8), 57 (2010).
   PubMed Web of Science ®Google Scholar
• Hood L, Friend SH. Predictive, personalized, preventive, participatory (P4) cancer medicine. Nat. Rev. Clin. Oncol.8(3), 184–187 (2011).
   PubMed Web of Science ®Google Scholar
• Saunders AM, Strittmatter WJ, Schmechel D et al. Association of apolipoprotein E allele ε 4 with late-onset familial and sporadic Alzheimer's disease. Neurology43(8), 1467–1472 (1993).
   PubMed Web of Science ®Google Scholar
• Piccart-Gebhart MJ, Procter M, Leyland-Jones B et al. Trastuzumab after adjuvant chemotherapy in HER2-positive breast cancer. N. Engl. J. Med.353(16), 1659–1672 (2005).
   PubMed Web of Science ®Google Scholar
• Chen P, Lin JJ, Lu CS et al. Carbamazepine-induced toxic effects and HLA-B*1502 screening in Taiwan. N. Engl. J. Med.364(12), 1126–1133 (2011).
   PubMed Web of Science ®Google Scholar
• McCormack M, Alfirevic A, Bourgeois S et al.HLA-A*3101 and carbamazepine-induced hypersensitivity reactions in Europeans. N. Engl. J. Med.364(12), 1134–1143 (2011).
   PubMed Web of Science ®Google Scholar
• Lejbkowicz I, Paperna T, Stein N, Dishon S, Miller A. Internet usage by patients with multiple sclerosis: implications to participatory medicine and personalized healthcare. Mult. Scler. Int.2010, 640749 (2010).
   PubMedGoogle Scholar
• Finkelstein J, Lapshin O, Castro H, Cha E, Provance PG. Home-based physical telerehabilitation in patients with multiple sclerosis: a pilot study. J. Rehabil. Res. Dev.45(9), 1361–1373 (2008).
   PubMedGoogle Scholar
• Zissman K, Lejbkowicz I, Miller A. Telemedicine for multiple sclerosis patients: assessment using Health Value Compass. Mult. Scler. doi:10.1177/1352458511421918 (2011) (Epub ahead of print).
   PubMedGoogle Scholar
• Shatil E, Metzer A, Horvitz O, Miller A. Home-based personalized cognitive training in MS patients: a study of adherence and cognitive performance. NeuroRehabilitation26(2), 143–153 (2010).
   PubMed Web of Science ®Google Scholar
• Nicholson JK, Wilson ID, Lindon JC. Pharmacometabonomics as an effector for personalized medicine. Pharmacogenomics12(1), 103–111 (2011).
   PubMed Web of Science ®Google Scholar
• Simopoulos AP. Nutrigenetics/nutrigenomics. Annu. Rev. Public Health31, 53–68 (2010).
   PubMed Web of Science ®Google Scholar
• Broekhuizen K, van Poppel MN, Koppes LL, Brug J, van Mechelen W. A tailored lifestyle intervention to reduce the cardiovascular disease risk of individuals with familial hypercholesterolemia (FH): design of the PRO-FIT randomised controlled trial. BMC Public Health10, 69 (2010).
   PubMedGoogle Scholar
• Frosch DL, Kaplan RM. Shared decision making in clinical medicine: past research and future directions. Am. J. Prev. Med.17(4), 285–294 (1999).
   PubMed Web of Science ®Google Scholar
• Greenfield S, Kaplan S, Ware JE Jr. Expanding patient involvement in care. Effects on patient outcomes. Ann. Intern. Med.102(4), 520–528 (1985).
   PubMed Web of Science ®Google Scholar
• Miller A, Avidan N, Tzunz-Henig N et al. Translation towards personalized medicine in multiple sclerosis. J. Neurol. Sci.274(1–2), 68–75 (2008).
   PubMed Web of Science ®Google Scholar
• Grossman I, Avidan N, Singer C et al. Pharmacogenetics of glatiramer acetate therapy for multiple sclerosis reveals drug-response markers. Pharmacogenet. Genomics17(8), 657–666 (2007).
   PubMed Web of Science ®Google Scholar
• Vandenbroeck K, Urcelay E, Comabella M. IFN-β pharmacogenomics in multiple sclerosis. Pharmacogenomics11(8), 1137–1148 (2010).
   PubMedGoogle Scholar
• Miller A, Paperna T, Caspi O, Lejbkowicz I, Staun-Ram E, Avidan N. Theranostics and translation towards personalized medicine for multiple sclerosis. In: Personalized Medicine, Healthcare and Integrative NeuroScience. Gordon E, Koslow SH (Eds). Oxford University Press, Oxford, UK, 205–254 (2010).
   Google Scholar
• Ozdemir V, Husereau D, Hyland S, Samper S, Salleh MZ. Personalized medicine beyond genomics: new technologies, global health diplomacy and anticipatory governance. Curr. Pharmacogenomics Person. Med.7(4), 225–230 (2009).
   PubMedGoogle Scholar
• Chiovetti A. Bridging the gap between health literacy and patient education for people with multiple sclerosis. J. Neurosci. Nurs.38(5), 374–378 (2006).
   PubMedGoogle Scholar
• Depold Hohler A, Doyle Lee J, Schulman EA, Schafer JA, Flippen C. Invited article: improving safety for the neurologic patient: evaluating medications, literacy, and abuse. Neurology75(8), 742–746 (2010).
   PubMedGoogle Scholar
• Wollin J, Dale H, Spense N, Walsh A. What people with newly diagnosed MS (and their families and friends) need to know. Int. J. MS Care2(3), 29–38 (2000).
   Google Scholar
• Harland J, Bath P. Assessing the quality of websites providing information on multiple sclerosis: evaluating tools and comparing sites. Health Informatics J.13(3), 207–221 (2007).
   PubMedGoogle Scholar
• Atreja A, Mehta N, Miller D et al. One size does not fit all: using qualitative methods to inform the development of an internet portal for multiple sclerosis patients. AMIA Annu. Symp. Proc.2005, 16–20 (2005).
   Google Scholar
• Hay MC, Cadigan RJ, Khanna D et al. Prepared patients: internet information seeking by new rheumatology patients. Arthritis Rheum.59(4), 575–582 (2008).
   PubMed Web of Science ®Google Scholar
• Ball MJ, Lillis J. E-health: transforming the physician/patient relationship. Int. J. Med. Inform.61(1), 1–10 (2001).
   PubMed Web of Science ®Google Scholar
• Potts HW, Wyatt JC. Survey of doctors’ experience of patients using the internet. J. Med. Internet Res.4(1), e5 (2002).
   PubMed Web of Science ®Google Scholar
• Wardell L, Stanley H, Laizner A, Lapierre Y. Multiple sclerosis patients’ interest in and likelihood of using online health-care services. Int. J. MS Care11, 79–89 (2009).
   Google Scholar
• Twomey F, Robinson K. Pilot study of participating in a fatigue management programme for clients with multiple sclerosis. Disabil. Rehabil.32(10), 791–800 (2010).
   PubMed Web of Science ®Google Scholar
• Motl RW, McAuley E. Pathways between physical activity and quality of life in adults with multiple sclerosis. Health Psychol.28(6), 682–689 (2009).
   PubMed Web of Science ®Google Scholar
• Snook EM, Motl RW. Effect of exercise training on walking mobility in multiple sclerosis: a meta-analysis. Neurorehabil. Neural Repair23(2), 108–116 (2009).
   PubMed Web of Science ®Google Scholar
• Motl RW, Gosney JL. Effect of exercise training on quality of life in multiple sclerosis: a meta-analysis. Mult. Scler.14(1), 129–135 (2008).
   PubMed Web of Science ®Google Scholar
• Motl RW, Dlugonski D, Wojcicki TR, McAuley E, Mohr DC. Internet intervention for increasing physical activity in persons with multiple sclerosis. Mult. Scler.17(1), 116–128 (2011).
   PubMed Web of Science ®Google Scholar
• Tan H, Cai Q, Agarwal S, Stephenson JJ, Kamat S. Impact of adherence to disease-modifying therapies on clinical and economic outcomes among patients with multiple sclerosis. Adv. Ther.28(1), 51–61 (2011).
   PubMed Web of Science ®Google Scholar
• Bruce JM, Hancock LM, Lynch SG. Objective adherence monitoring in multiple sclerosis: initial validation and association with self-report. Mult. Scler.16(1), 112–120 (2010).
   PubMed Web of Science ®Google Scholar
• Devonshire V, Lapierre Y, Macdonell R et al. The Global Adherence Project (GAP): a multicenter observational study on adherence to disease-modifying therapies in patients with relapsing–remitting multiple sclerosis. Eur. J. Neurol.18(1), 69–77 (2011).
   PubMed Web of Science ®Google Scholar
• Bruce JM, Hancock LM, Arnett P, Lynch S. Treatment adherence in multiple sclerosis: association with emotional status, personality, and cognition. J. Behav. Med.33(3), 219–227 (2010).
   PubMed Web of Science ®Google Scholar
• Saunders C, Caon C, Smrtka J, Shoemaker J. Factors that influence adherence and strategies to maintain adherence to injected therapies for patients with multiple sclerosis. J. Neurosci. Nurs.42(5 Suppl.), S10–S18 (2010).
   Google Scholar
• Treadaway K, Cutter G, Salter A et al. Factors that influence adherence with disease-modifying therapy in MS. J. Neurol.256(4), 568–576 (2009).
   PubMed Web of Science ®Google Scholar
• Yamout BI, Dahdaleh M, Al Jumah MA et al. Adherence to disease-modifying drugs in patients with multiple sclerosis: a consensus statement from the Middle East MS Advisory Group. Int. J. Neurosci.120(4), 273–279 (2010).
   PubMed Web of Science ®Google Scholar
• Klauer T, Zettl UK. Compliance, adherence, and the treatment of multiple sclerosis. J. Neurol.255(Suppl. 6), 87–92 (2008).
   PubMed Web of Science ®Google Scholar
• Lugaresi A. Addressing the need for increased adherence to multiple sclerosis therapy: can delivery technology enhance patient motivation? Expert Opin. Drug Deliv.6(9), 995–1002 (2009).
   PubMed Web of Science ®Google Scholar
• Bruce JM, Lynch SG. Multiple sclerosis: MS treatment adherence – how to keep patients on medication? Nat. Rev. Neurol.7(8), 421–422 (2011).
   PubMed Web of Science ®Google Scholar
• Turner AP, Kivlahan DR, Sloan AP, Haselkorn JK. Predicting ongoing adherence to disease modifying therapies in multiple sclerosis: utility of the Health Beliefs Model. Mult. Scler.13(9), 1146–1152 (2007).
   PubMed Web of Science ®Google Scholar
• Miller W, Rollnick S. Motivational Interviewing: Preparing People to Change. Guilford Press, NY, USA (2002).
   Google Scholar
• Berger BA, Liang H, Hudmon KS. Evaluation of software-based telephone counseling to enhance medication persistency among patients with multiple sclerosis. J. Am. Pharm. Assoc. (2003)45(4), 466–472 (2005).
   PubMed Web of Science ®Google Scholar
• Prochaska J, DiClemente C. The Transtheoretical Approach: Crossing the Traditional Boundaries of Therapy. Krieger Publishing Company, Melbourne, FL, USA (1984).
   Google Scholar
• Kurtzke JF. Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology33(11), 1444–1452 (1983).
   PubMed Web of Science ®Google Scholar
• Goldman MD, Motl RW, Rudick RA. Possible clinical outcome measures for clinical trials in patients with multiple sclerosis. Ther. Adv. Neurol. Disord.3(4), 229–239 (2010).
   PubMedGoogle Scholar
• Daumer M, Neuhaus A, Morrissey S, Hintzen R, Ebers GC. MRI as an outcome in multiple sclerosis clinical trials. Neurology72(8), 705–711 (2009).
   PubMed Web of Science ®Google Scholar
• Riazi A. Patient-reported outcome measures in multiple sclerosis. Int. MS J.13(3), 92–99 (2006).
   PubMedGoogle Scholar
• Hobart JC, Riazi A, Lamping DL, Fitzpatrick R, Thompson AJ. Measuring the impact of MS on walking ability: the 12-Item MS Walking Scale (MSWS-12). Neurology60(1), 31–36 (2003).
   PubMed Web of Science ®Google Scholar
• Motl RW, McAuley E, Mullen S. Longitudinal measurement invariance of the Multiple Sclerosis Walking Scale-12. J. Neurol. Sci.305(1–2), 75–79 (2011).
   PubMed Web of Science ®Google Scholar
• Motl RW, Snook EM. Confirmation and extension of the validity of the Multiple Sclerosis Walking Scale-12 (MSWS-12). J. Neurol. Sci.268(1–2), 69–73 (2008).
   PubMed Web of Science ®Google Scholar
• Goodman AD, Brown TR, Edwards KR et al. A Phase 3 trial of extended release oral dalfampridine in multiple sclerosis. Ann. Neurol.68(4), 494–502 (2010).
   PubMed Web of Science ®Google Scholar
• Goodman AD, Brown TR, Krupp LB et al. Sustained-release oral fampridine in multiple sclerosis: a randomised, double-blind, controlled trial. Lancet373(9665), 732–738 (2009).
   PubMed Web of Science ®Google Scholar
• Hohol MJ, Orav EJ, Weiner HL. Disease steps in multiple sclerosis: a longitudinal study comparing disease steps and EDSS to evaluate disease progression. Mult. Scler.5(5), 349–354 (1999).
   PubMed Web of Science ®Google Scholar
• Hadjimichael O, Kerns RD, Rizzo MA, Cutter G, Vollmer T. Persistent pain and uncomfortable sensations in persons with multiple sclerosis. Pain127(1–2), 35–41 (2007).
   PubMed Web of Science ®Google Scholar
• Motl RW, Dlugonski D, Suh Y, Weikert M, Fernhall B, Goldman M. Accelerometry and its association with objective markers of walking limitations in ambulatory adults with multiple sclerosis. Arch. Phys. Med. Rehabil.91(12), 1942–1947 (2010).
   PubMed Web of Science ®Google Scholar
• Wicks P, Massagli M, Kulkarni A, Dastani H. Use of an online community to develop patient-reported outcome instruments: the Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ). J. Med. Internet Res.13(1), e12 (2011).
   Google Scholar
• Krupp LB, LaRocca NG, Muir-Nash J, Steinberg AD. The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus. Arch. Neurol.46(10), 1121–1123 (1989).
   PubMed Web of Science ®Google Scholar
• Mills R, Young C, Nicholas R, Pallant J, Tennant A. Rasch analysis of the Fatigue Severity Scale in multiple sclerosis. Mult. Scler.15(1), 81–87 (2009).
   PubMed Web of Science ®Google Scholar
• Vickrey BG, Hays RD, Harooni R, Myers LW, Ellison GW. A health-related quality of life measure for multiple sclerosis. Qual. Life Res.4(3), 187–206 (1995).
   PubMed Web of Science ®Google Scholar
• Cella DF, Dineen K, Arnason B et al. Validation of the functional assessment of multiple sclerosis quality of life instrument. Neurology47(1), 129–139 (1996).
   PubMed Web of Science ®Google Scholar
• Fischer JS, LaRocca NG, Miller DM, Ritvo PG, Andrews H, Paty D. Recent developments in the assessment of quality of life in multiple sclerosis (MS). Mult. Scler.5(4), 251–259 (1999).
   PubMed Web of Science ®Google Scholar
• Hobart J, Lamping D, Fitzpatrick R, Riazi A, Thompson A. The Multiple Sclerosis Impact Scale (MSIS-29): a new patient-based outcome measure. Brain124(Pt 5), 962–973 (2001).
   PubMed Web of Science ®Google Scholar
• Ford HL, Gerry E, Tennant A, Whalley D, Haigh R, Johnson MH. Developing a disease-specific quality of life measure for people with multiple sclerosis. Clin. Rehabil.15(3), 247–258 (2001).
   PubMed Web of Science ®Google Scholar
• Benedict RH, Wahlig E, Bakshi R et al. Predicting quality of life in multiple sclerosis: accounting for physical disability, fatigue, cognition, mood disorder, personality, and behavior change. J. Neurol. Sci.231(1–2), 29–34 (2005).
   PubMed Web of Science ®Google Scholar
• Mitchell AJ, Benito-Leon J, Gonzalez JM, Rivera-Navarro J. Quality of life and its assessment in multiple sclerosis: integrating physical and psychological components of wellbeing. Lancet Neurol.4(9), 556–566 (2005).
   PubMed Web of Science ®Google Scholar
• Opara JA, Jaracz K, Brola W. Quality of life in multiple sclerosis. J. Med. Life3(4), 352–358 (2010).
   PubMedGoogle Scholar
• Boguski MS, Mandl KD, Sukhatme VP. Drug discovery. Repurposing with a difference. Science324(5933), 1394–1395 (2009).
   PubMed Web of Science ®Google Scholar
• Fisher RS. Tracking epilepsy with an electronic diary. Acta Paediatr.99(4), 516–518 (2010).
   PubMedGoogle Scholar
• Chafe R, Born KB, Slutsky AS, Laupacis A. The rise of people power. Nature472(7344), 410–411 (2011).
   PubMed Web of Science ®Google Scholar
• Zamboni P, Galeotti R, Menegatti E et al. Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis. J. Neurol. Neurosurg. Psychiatry80(4), 392–399 (2009).
   PubMed Web of Science ®Google Scholar
• Baracchini C, Perini P, Calabrese M, Causin F, Rinaldi F, Gallo P. No evidence of chronic cerebrospinal venous insufficiency at multiple sclerosis onset. Ann. Neurol.69(1), 90–99 (2011).
   PubMed Web of Science ®Google Scholar
• Mayer CA, Pfeilschifter W, Lorenz MW et al. The perfect crime? CCSVI not leaving a trace in MS. J. Neurol. Neurosurg. Psychiatry82(4), 436–440 (2011).
   PubMed Web of Science ®Google Scholar
• Frueh FW, Greely HT, Green RC, Hogarth S, Siegel S. The future of direct-to-consumer clinical genetic tests. Nat. Rev. Genet.12(7), 511–515 (2011).
   PubMedGoogle Scholar
• Basch E. The missing voice of patients in drug-safety reporting. N. Engl. J. Med.362(10), 865–869 (2010).
   PubMed Web of Science ®Google Scholar
• Sadee W. Genomics and personalized medicine. Int. J. Pharm.415(1–2), 2–4 (2011).
   PubMedGoogle Scholar
• Wilke RA, Xu H, Denny JC et al. The emerging role of electronic medical records in pharmacogenomics. Clin. Pharmacol. Ther.89(3), 379–386 (2011).
   PubMed Web of Science ®Google Scholar