milano (06 02 09) final
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Presentació a MilàTRANSCRIPT
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Joan Escarrabill MDInstitut d’Estudis de la Salut
Barcelona
Home care in neuromuscular patients: generalists or specialized teams?
Milano. Venerdì 6 febbraio 2009
“Hot topics” nelle Malattie del Motoneurone
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Agenda
Decision-making process
Survival and death in ALS
Multidisciplinary team
General practitioner
The patient
Realistic approach
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BMJ 2002;324:1350
The evidence-based medicine is not an exclusive element for making clinical decisions
It is not easy to define good clinical practice
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4 Haynes RB, Devereuax PJ, Guyatt GH. BMJ 2002;324:1350
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BMJ 2005;330:1007-11.
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BMJ 2005;330:1007-11.
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Agenda
Decision-making process
Survival and death in ALS
Multidisciplinary team
General practitioner
The patient
Realistic approach
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J Neurol Neurosurg Psychiatry 2004;75:1753-55
Scottish ALS Register
n=1226
Medical nihilism ?
Riluzole & PEG use increases
Patient autonomy
Less aggressive therapy
2.4 months
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Survival in ALS patients with bulbar involvement
Farrero et al. Chest 2007;127:2132-8
NIV Tolerance
NIV intolerance
NIV Tolerance
NIV intolerance
Hypercapnia
Normocapnia
NIV Tolerance
NIV intolerance
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Bulbar impairment
BulbarNon-Bulbar
Bourke SC. Lancet Neurol 2006;5:140-7
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ALS: Acute chest infection
Servera E. J Neurol Sci 2003;209:111-3
65 yrs old man
Daytime Mouth pieceNasal mask for nocturnal use
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Lancet Neurol 2006;5:140-7
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Are NIV trials necessaries in ALS with non-bulbar impairement?
Servera E. Sancho S. Lancet Neurol 2006;5:140-7
Ethical issues
Non-bulbar patients in control group
Stop studies according the results
Technical issues
Assessment effects of NIV
Pressure vs volume ventilators
Secretion management
It’s mandatory to evaluate therapy “package”
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Survival on HMVLaub M & Midgren B. Respir Med 2007;101:1074-8
n=1526
ALS
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Kurian KM et al. J Neurol Neurosurg Psychiatry. 2009;80:84-7.
44 patients undergoing autopsy
73% respiratory causes
Scottish Motor Neurone Disease Register
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ALS: causes of death
77%
13%10%
Respiratory
Other
Unknown
Gil J et al. Eur J Neurol 2008;15:1245-51
Post-surgical or traumatic conditions (5%)Cardiac causes (3.4%)Suicide (1.3%)Sudden deathn (0.7%).
n = 302 patients
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Brain 2008;131:2729-2733
Sweden 1965-2004 6642 patients
Relative risk is higher during the earlier stage of the disease, within the first year after the patient’s first period of hospitalization
Suicide ALS partients Predicted
21 3,6
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ALS: Therapy at the time of death
33%
67%
NIV Non NIV
3%
97%
Tracheo Non Tracheo
55%
45%
Riluzole Non Riluzole
37%63%
PEG Non PEG
NIV Tracheo
Riluzole PEG
Gil J et al. Eur J Neurol 2008;15:1245-51
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Agenda
Decision-making process
Survival and death in ALS
Multidisciplinary team
General practitioner
The patient
Realistic approach
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Mitsumoto H & Rabkin JG. JAMA. 2007;298:207-216
Care in multidisciplinary clinics is
associated with enhanced quality
of life by alleviating symptoms
and may extend survival
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Mitsumoto H & Rabkin JG. JAMA. 2007;298:207-216
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Zoccolella S et al. J Neurol 2007;254:1107-12
No improvements in survival: Low rate of interventions?
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Survival of Irish ALS patients
One year mortality wasdecreased by 29.7%
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Survival of Irish ALS patients with bulbar onset
Prognosis of bulbar onset patients was extended by 9.6 months
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ALS patients who received their care at a multidisciplinary clinic had a better prognosis
Recruitment bias
ALS clinic treated a group of fitter ALS patients
General neurologistssaw all ALS patients
Living further from ALS clinicMore disabledIncreased ageBulbar onsetShorter duration of illness
Hutchinson M. J Neurol Neurosurg Psychiatry 2004;75:1208-12
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Effect of referral bias Sorenson EJ et al. Neurology 2007;68:600-602
132 subjectsTertiary center3 years.
Survival
p = 0.007
referral population
local
population
29 months 18 months
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J Neurol Neurosurg Psychiatry 2006;77:948-50
Tertiary center
Neurology clinic
1080 days
775 days
The median survival from onsetwas 10 months longer
in ALS centers
4 yrs youngerPEG & NIV more oftenLess hospital admissions
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Chest 2007;127:2132-8
Early systematic respiratory evaluation is necessary to improve the results
Of HMV in ALS
Survival in patients without bulbar involvement
Protocol
Pre-Protocol
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www.has-sante.fr/
2003 17 Reference centers
CoodinationWorking groupsLocal organization
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59%
41%
Ile de France Non ILD
Evalutaion of ALS reference centers
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Home care organized through reference centers has many limitations
Complex organization, Distance, Response to emergencies
In most cases the reference center coordinates care but it can not assume direct care
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Reference centers: benefits and limits
Improve skills & knowledge
DistanceUnnecessary referalsHealth professionals workload
+
-
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Agenda
Decision-making process
Survival and death in ALS
Multidisciplinary team
General practitioner
The patient
Realistic approach
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Health Policy 2007;80:172–178
The impact of GPs with special clinical interests has
not been studied in any detail
It is important to assess the differences between the physician with a special interest in a process and a
nurse case manager
Less serious conditions.
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JAMA 1998;279:1364-1370
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Can Fam Physician 2006;52:1563-1569.
“Because ALS is a complex disease, care of ALS patients is best provided at multidisciplinaryclinics that specialize in managing patients with this disorder”
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Paul Bonisteel MD CCFP FCFPcanadian rural physician
Bonisteel P. Can Fam Physician. 2007;53: 402.
The multidisciplinary team is an urban construct that works from a
geographically fixed site
Living 100 km from the capital city, the team means to use existing resources in the community
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General practitioners are more accessibles and closer than the center of reference, but they can not work without the support of experts
Home care of patients with ALS without the support of experts is unacceptable
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Agenda
Decision-making process
Survival and death in ALS
Multidisciplinary team
General practitioner
The patient
Realistic approach
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Generalists or specialized teams: only?
Generalists Specializedteams
Patients
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www.patientslikeme.com/
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Sweden 1965-2004
6642 patients
40 years
3 years
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Three stars PALS
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Equipment
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NIV
n=345
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Anxiety Constipation
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PNAS 2008;105: 2052–2057
n=44 16: Riluzole + Lithium28: Riluzole
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www.pnas.org/content/105/16/E17.full.pdf+html
Bedlack RS et al
• Selection: inclusion/exclusion criteria
• How many were screened to accrue 44 participants?
• Placebo in the nonlithium group
• Were patients blinded to treatment assignment?
• Drop-outs
• Use of ventilatory support
• PEG
• Adverse events
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http://alslithium.atspace.com/
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www.its.caltech.edu/~kfelzer/SixMonthUpdate.pdf
n=191
37% stopped before 6 months
side effectslack of efficacydoctor’s advice
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www.its.caltech.edu/~kfelzer/SixMonthUpdate.pdf
Lessons Fast recruitment of patients
Positive “side effects”
Negative results regarding progression of the disease
low doses (150 mg/day) of lithium might be tried primarily for the
relief of painful cramps
Lithium should not be recommended for most ALS patients
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Agenda
Decision-making process
Survical and death in ALS
Multidisciplinary team
General practitioner
The patient
Realistic approach
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Some questions
Specific network for each disease?
The needs of each patient are heterogeneous
Patients' needs change through the natural history
Balance between difficulties of accessibility and personal benefits
Answer to problems non directlly related to ALS
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Generalists or specialized teams: only?
Generalists Specializedteams
Support network
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Community nurse
Home care
General practitioner
Resources in the community
RRTSocial worker
Occupational therapist
Multidisciplinary team
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Escarrabill J. Arch Bronconeumol 2007;43:527-9
Patient-centered care: accessibility vs performance
Network Reference center
General practitioner
Support network
Information technology and communication
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Support network
Case manager
J Nurs Care Qual 2004;19:67-73
Support team
• Care for patients with different diseases but with common problems• Skills to care patients with ALS (respiratory problems)• Coordination of care: specialized team / generalist• Alternatives to the home (hospice)
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Catalonia WHO Palliative Care Demonstration Project at 15 Years (2005)
X Gómez-Batiste. Journal of Pain and Symptom Management 2007;22:584-590
59%41%
Cancer Non cancer
21,400 patients received palliative carePalliative care networks
95% population coverage
Home care, hospice, social support
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The “S. Maugeri” Telepneumology Programm
Pulse oximetry / HRPneumotacograph
Central workstation
on call
Tutor nurse
Vitacca M. Telemed & e-Health 2007;13:1-5
Technical elements
Health professional
access
General support
Nurse solving problems
Access to pneumologist on duty
24 h/day
Educational material Link with GP
Telemetricmonitoring
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Community nurse
Home care
General practitioner
Resources in the community
RRTSocial worker
Occupational therapist
Multidisciplinary team
Support team Hospice
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www.slideshare.net/jescarra
Grazie per la sua attenzione !