A pilot trial of telemedicine-assisted, integrated care for patients with advanced amyotrophic lateral sclerosis and their caregivers

Journal of Telemedicine and Telecare

Volumn 16, Issue 2, 2010, Pages 83-88

  Vitacca, Michele ^a   Comini, Laura ^a   Tentorio, Marta ^a   Assoni, Giuliano ^a   Trainini, Debora ^a   Fiorenza, Domenico ^a   Morini, Roberta ^a   Bruletti, Gisella ^a   Scalvini, Simonetta ^a  

^a IRCCS   (Italy)

Author keywords

[No Author keywords available]

Indexed keywords

AGED; AMYOTROPHIC LATERAL SCLEROSIS; ARTICLE; CAREGIVER; DAILY LIFE ACTIVITY; FEMALE; HOME CARE; HUMAN; ITALY; MALE; METHODOLOGY; MIDDLE AGED; ORGANIZATION AND MANAGEMENT; PATIENT SATISFACTION; PILOT STUDY; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; QUESTIONNAIRE; TELECONSULTATION; TELEMEDICINE;

ACTIVITIES OF DAILY LIVING; AGED; AMYOTROPHIC LATERAL SCLEROSIS; CAREGIVERS; FEMALE; HOME CARE SERVICES; HUMANS; ITALY; MALE; MIDDLE AGED; PATIENT SATISFACTION; PILOT PROJECTS; QUALITY OF LIFE; QUESTIONNAIRES; REMOTE CONSULTATION; TELEMEDICINE;

EID: 77449149223     PISSN: 1357633X     EISSN: 17581109     Source Type: Journal    
DOI: 10.1258/jtt.2009.090604     Document Type: Article

References (22)

1. Czaplinski A, Yen AA, Simpson EP, Appel SH. Slower disease progression and prolonged survival in contemporary patients with amyotrophic lateral sclerosis: is the natural history of amyotrophic lateral sclerosis changing? Arch Neurol 2006;63:1139-43
2. Leigh PN, Abrahams S, Al-Chalabi A, et al. King's MND Care and Research Team. The management of motor neurone disease. J Neurol Neurosurg Psychiatry 2003;74 (Suppl. 4):32-47
3. Chio A, Mora G, Balzarino C, Mutani R. Interdisciplinary ALS Centres: effect on survival and use of health services in a population-based survey. Neurology 2004;62 (Suppl. 5):A268
4. Radunović A, Mitsumoto H, Leigh PN. Clinical care of patients with amyotrophic lateral sclerosis. Lancet Neurol 2007;6:913-25
5. Van den Berg JP, Kalmijn S, Lindeman E, et al. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology 2005;65:1264-7
6. Miller RG, Rosenberg JA, Gelinas DF, et al. Practice parameter: the care of the patient with amyotrophic lateral sclerosis (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology: ALS Practice Parameters Task Force. Neurology 1999;52:1311-23
7. Vitacca M, Escarrabill J, Galavotti G, et al. Home mechanical ventilation patients: a retrospective survey to identify level of burden in real life. Monaldi Arch Chest Dis 2007;67:142-7
8. Hecht MJ, Graesel E, Tigges S, et al. Burden of care in amyotrophic lateral sclerosis. Palliat Med 2003;17:327-33
9. American Thoracic Society. Statement on home care for patients with respiratory disorders. Am J Respir Crit Care Med 2005;171:1443-64
10. Chiò A, Bottacchi E, Buffa C, Mutani R, Mora G. Positive effects of tertiary centres for amyotrophic lateral sclerosis on outcome and use of hospital facilities. J Neurol Neurosurg Psychiatry 2006;77:948-50
11. Mannino M, Cellura E, Grimaldi G, Volanti P, Piccoli F, La Bella V. Telephone follow-up for patients with amyotrophic lateral sclerosis. Eur J Neurol 2007;14:79-84
12. Tura A, Santini P, Longo D, Quareni L. A telemedicine instrument for home monitoring of patients with chronic respiratory diseases. Ann Ist Super Sanita 2007;43:101-9
13. Nijeweme-d'Hollosy WO, Janssen EP, Huis in 't Veld RM, Spoelstra J, Vollenbroek-Hutten MM, Hermens HJ. Tele-treatment of patients with amyotrophic lateral sclerosis (ALS). J Telemed Telecare 2006;12 (Suppl.1):31-4
14. Vitacca M, Bianchi L, Guerra A, et al. Tele-assistance in chronic respiratory failure patients: a randomised clinical trial. Eur Respir J 2009;33:411-8
15. Brooks BR, Miller RG, Swash M, Munsat TL. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord 2000;1:293-9
16. Katz S, Ford AB, Moskowitz RW, Jackson BA, Jaffe MW. Studies of illness in the aged. The index of ADL: a standardised measure of biological and psychosocial function. JAMA 1963;185:914-9
17. Cedarbaum JM, Stambler N, Malta E, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). J Neurol Sci 1999;169:13-21
18. Vitacca M, Assoni G, Pizzocaro P, et al. A pilot study of nurse-led, home monitoring for patients with chronic respiratory failure and with mechanical ventilation assistance. J Telemed Telecare 2006;12:337-42
19. Bach JR, Ishikawa Y, Kim H. Prevention of pulmonary morbidity for patients with Duchenne muscular dystrophy. Chest 1997;112:1024-8
20. Make BJ, Hill NS, Goldberg AI, et al. Mechanical ventilation beyond the intensive care unit. Report of a consensus conference of the American College of Chest Physicians. Chest 1998;113 (Suppl.5):289S-344S
21. Chiò A, Gauthier A, Vignola A, et al. Caregiver time use in ALS. Neurology 2006;67:902-4
22. Tearl DK, Cox TJ, Hertzog JH. Hospital discharge of respiratory- technology-dependent children: role of a dedicated respiratory care discharge coordinator. Respir Care 2006;51:744-9