Quality of life of patients with amyotrophic lateral sclerosis

References

• Andersen , P.M. , Borasio , G.D. , Dengler , R. , Hardiman , O. , Kollewe , K. , Leigh , P.N., … and EFNS Task Force on Diagnosis and Management of Amyotrophic Lateral Sclerosis . 2005 . EFNS task force on management of amyotrophic lateral sclerosis: Guidelines for diagnosing and clinical care of patients and relatives . European Journal of Neurology , 12 : 921 – 938 .
   PubMed Web of Science ®Google Scholar
• Averill , A.J. , Kasarskis , E.J. and Segerstrom , S.C. 2007 . Psychological health in patients with amyotrophic lateral sclerosis . Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders , 8 : 243 – 254 .
   PubMed Web of Science ®Google Scholar
• Bede , P , Oliver, D. , Stodart , J. , van den Berg , L. , Simmons , Z. , Brannagáin , D.O., … and Borasio , G.D. 2011 . Palliative care in amyotrophic lateral sclerosis: A review of current international guidelines and initiatives . Journal of Neurology, Neurosurgery and Psychiatry , 82, 413–418
   Web of Science ®Google Scholar
• Bromberg , M.B. 2008 . Quality of life in amyotrophic lateral sclerosis . Physical Medicine and Rehabilitation Clinics of North America , 19 : 591 – 605 .
   PubMed Web of Science ®Google Scholar
• Bromberg , M.B. and Forshew , D.A. 2002 . Comparison of instruments addressing quality of life in patients with ALS and their caregivers . Neurology , 58 : 320 – 322 .
   PubMed Web of Science ®Google Scholar
• Brooks , B.R. , Miller , R.G. , Swash , M. , Munsat , T.L., and World Federation of Neurology Research Group on Motor Neuron Diseases . 2000 . El Escorial revisited: Revised criteria for the diagnosis of amyotrophic lateral sclerosis . Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders , 1 : 293 – 299 .
   PubMed Web of Science ®Google Scholar
• Cedarbaum , J.M. and Stambler , N. 1997 . Performance of the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS) in multicenter clinical trials . Journal of the Neurological Sciences , 152 (S1) : S1 – S9 .
   PubMed Web of Science ®Google Scholar
• Chiò , A. , Gauthier , A. , Calvo , A. , Ghiglione , P. and Mutani , R. 2005 . Caregiver burden and patients' perception of being a burden in ALS . Neurology , 64 : 1780 – 1782 .
   PubMed Web of Science ®Google Scholar
• Clarke , S. , Hickey , A. , O'Boyle , C. and Hardiman , O. 2001 . Assessing individual quality of life in amyotrophic lateral sclerosis . Quality of Life Research , 10 : 149 – 158 .
   PubMed Web of Science ®Google Scholar
• Epton , J. , Harris , R. and Jenkinson , C. 2009 . Quality of life in amyotrophic lateral sclerosis/motor neuron disease: A structured review . Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders , 10 ( 1 ) : 15 – 26 .
   PubMed Web of Science ®Google Scholar
• Felgoise , S.H. , Stewart , J.L. , Bremer , B.A. , Walsh , S.M. , Bromberg , M.B. and Simmons , Z. 2009 . The SEIQoL-DW for assessing quality of life in ALS: Strengths and limitations . Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders , 10 : 456 – 462 .
   PubMed Web of Science ®Google Scholar
• Gauthier , A. , Vignola , A. , Calvo , A. , Cavallo , E. , Moglia , C. , Sellitti , L., … and Chiò , A. 2007 . A longitudinal study on quality of life and depression in ALS patient-caregiver couples . Neurology , 68 : 923 – 926 .
   PubMed Web of Science ®Google Scholar
• Goldstein , L.H. , Adamson , M. , Jeffrey , L. , Down , K. , Barby , T. , Wilson , C. and Leigh , P.N. 1998 . The psychological impact of MND on patients and carers . Journal of the Neurological Sciences , 160 ( Suppl. 1 ) : S114 – S121 .
   PubMed Web of Science ®Google Scholar
• Goldstein , L.H. , Atkins , L. , Landau , S. , Brown , R. and Leigh , P.N. 2006 . Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: A longitudinal study . Psychological Medicine , 36 : 865 – 875 .
   PubMed Web of Science ®Google Scholar
• Grehl , T. , Rupp , M. , Budde , P. , Tegenthoff , M. and Fangerau , H. 2011 . Depression and QOL in patients with ALS: How do self-ratings and ratings by relatives differ? . Quality of Life Research , 20, 569–574
   Web of Science ®Google Scholar
• Hammer , E.M. , Haecker , S. , Hautzinger , M. , Meyer , T.D. and Kuebler , A. 2008 . Validity of the ALS-Depression-Inventory (ADI-12): A new screening instrument for depressive disorders in patients with amyotrophic lateral sclerosis . Journal of Affective Disorders , 109 ( 1 ) : 213 – 219 .
   PubMed Web of Science ®Google Scholar
• Hecht , M.J. , Graesel , E. , Tigges , S. , Hillemacher , T. , Winterholler , M. , Hilz , M.J., … and Neundörfer , B. 2003 . Burden of care in amyotrophic lateral sclerosis . Palliative Medicine , 17 : 327 – 333 .
   PubMed Web of Science ®Google Scholar
• Hill , M.R. , Noonan , V.K. , Sakakibara , B.M. , Miller , W.C., and the SCIRE Research Team . 2010 . Quality of life instruments and definitions in individuals with spinal cord injury: A systematic review . Spinal Cord , 48 : 438 – 450 .
   PubMed Web of Science ®Google Scholar
• Kurt , A. , Nijboer , F. , Matuz , T. and Kübler , A. 2007 . Depression and anxiety in individuals with amyotrophic lateral sclerosis: Epidemiology and management . CNS Drugs , 21 : 279 – 291 .
   PubMed Web of Science ®Google Scholar
• Matuz , T. , Birbaumer , N. , Hautzinger , M. and Kübler , A. 2010 . Coping with amyotrophic lateral sclerosis: An integrative view . Journal of Neurology, Neurosurgery and Psychiatry , 81 : 893 – 898 .
   PubMed Web of Science ®Google Scholar
• McGee , H. 2004 . “ Quality of life ” . In Health psychology , Edited by: Kaptein , A. and Weinmann , J. 234 – 257 . Oxford : Blackwell .
   Google Scholar
• McLeod , J.E. and Clarke , D.M. 2007 . A review of psychosocial aspects of motor neurone disease . Journal of the Neurological Sciences , 258 : 4 – 10 .
   PubMed Web of Science ®Google Scholar
• Neudert , C. , Wasner , M. and Borasio , G.D. 2001 . Patients' assessment of quality of life instruments: A randomised study of SIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis . Journal of Neurological Sciences , 191 ( 1–2 ) : 103 – 109 .
   PubMed Web of Science ®Google Scholar
• Neudert , C. , Wasner , M. and Borasio , G.D. 2004 . Individual quality of life is not correlated with health-related quality of life or physical function in patients with amyotrophic lateral sclerosis . Journal of Palliative Medicine , 7 : 551 – 557 .
   PubMedGoogle Scholar
• Olsson , Ozanne, A.G. , Strang , S. and Persson , L.I. 2011 . Quality of life, anxiety and depression in ALS patients and their next of kin . Journal of Clinical Nursing , 20 ( 1–2 ) : 283 – 291 .
   PubMed Web of Science ®Google Scholar
• Rabkin , J.G. , Albert , S.M. , Rowland , L.P. and Mitsumoto , H. 2009 . How common is depression among ALS caregivers? A longitudinal study . Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders , 10 : 448 – 455 .
   PubMed Web of Science ®Google Scholar
• Rabkin , J.G. , Wagner , G.J. and Del Bene , M. 2000 . Resilience and distress among amyotrophic lateral sclerosis patients and caregivers . Psychosomatic Medicine , 62 : 271 – 279 .
   PubMed Web of Science ®Google Scholar
• Simmons , Z. 2005 . Management strategies for patients with amyotrophic lateral sclerosis from diagnosis through death . The Neurologist , 11 : 257 – 270 .
   PubMed Web of Science ®Google Scholar
• Trail , M. , Nelson , N. , Van , N.J. , Appel , S.H. and Lai , E.C. 2004 . Major stressors facing patients with Amyotrophic Lateral Sclerosis (ALS): A survey to identify their concerns and to compare with those of their caregivers . Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders , 5 ( 1 ) : 40 – 45 .
   PubMed Web of Science ®Google Scholar
• Trail , M. , Nelson , N.D. , Van , J.N. , Appel , S.H. and Lai , E.C. 2003 . A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options . Journal of the Neurological Sciences , 209 ( 1–2 ) : 79 – 85 .
   PubMed Web of Science ®Google Scholar
• Ware , J.E. and Sherbourne , C.D. 1992 . The MOS 36-item short-form health survey (SF-36). Conceptual framework and item selection . Medical Care , 30 : 473 – 483 .
   PubMed Web of Science ®Google Scholar
• Wettergren , L. , Kettis-Lindblad , A. , Sprangers , M. and Ring , L. 2009 . The use, feasibility and psychometric properties of an individualised quality-of-life instrument: A systematic review of the SEIQoL-DW . Quality of Life Research , 18 : 737 – 746 .
   PubMed Web of Science ®Google Scholar
• Zung , W.W. 1965 . A self-rating depression scale . Archives of General Psychiatry , 12 : 63 – 70 .
   PubMed Web of Science ®Google Scholar