Milano (06 02 09) Final

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Joan Escarrabill MDInstitut d’Estudis de la Salut

Barcelona

[email protected]

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

4 Haynes RB, Devereuax PJ, Guyatt GH. BMJ 2002;324:1350

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BMJ 2005;330:1007-11.

6

BMJ 2005;330:1007-11.

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Agenda





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





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





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.

35

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





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


Survical and death in ALS



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


Resources in the community

RRTSocial worker

Occupational therapist


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Escarrabill J. Arch Bronconeumol 2007;43:527-9

Patient-centered care: accessibility vs performance

Network Reference center


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


Resources in the community

RRTSocial worker

Occupational therapist


Support team Hospice

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www.slideshare.net/jescarra

Grazie per la sua attenzione !

Milano (06 02 09) Final

Health & Medicine

Transcript of Milano (06 02 09) Final