Anita K Simonds - Fundació Josep Laporte

Anita K Simonds
1st Workshop on Home Mechanical Ventilation Barcelona March 3 2008
A Fatal Complication of Noninvasive Ventilatio
To the Editor: Noninvasive positive-pressure ventilation is widely used in patients with chronic
respiratory failure due to neuromuscular diseases such as amyotrophic lateral sclerosis.1 Noninvasive
positive-pressure ventilation can be used intermittently, the equipment is portable, and ventilation
does not interfere with eating and speaking. It is considered safe, and most problems that occur are
related to the fit of the mask and the risk of aspiration pneumonitis.2 We describe a complication we
have not previously seen reported.
The patient was a previously healthy 53-year-old man with amyotrophic lateral sclerosis who was
started on nocturnal noninvasive positive-pressure ventilation (inspiratory pressure, 10 cm of water;
expiratory pressure, 2 cm of water). He tolerated this well and decided that he did not want invasive
mechanical ventilation in the future. The patient's disease progressed, but he continued to work fulltime and used noninvasive positive-pressure ventilation all night and most of the day. He obtained a
second ventilator, which he kept at work.
More than a year after noninvasive ventilation was initiated, the patient's
ventilating unit failed. The machine's error code indicated that there had been a
power-supply failure. Respiratory distress quickly developed, and the patient
was taken to a local hospital but died of respiratory failure before ventilation
could be reinstituted.
.
Noah Lechtzin, M.D., M.H.S.
Charles M. Weiner, M.D.
Lora Clawson, M.S.N., C.R.N.P.
Johns Hopkins University School of Medicine
Baltimore, MD 21287
NEJM
344:533 2001 Number 7
Frequency and causes of ventilator failure
N=150 76% Tracheostomy-IPPV 189 reports of ventilator failure
Srinivasan et al Chest 1998;114:1363-67
Outcome of ventilator failure
Srinivasan et al Chest 1998;114:1363-67
Eurovent study
Eur Respir J 2005;26:86-94
Eur Respir J 2005;25:1025-31
Key points
y
y
y
y
y
Equipment performance and safety
Equipment supplies
Patient and family/carer competency
Medical competency
Anticipation of problems
Risk management in the home ventilator dependent patient
y Whose responsibility?
y Potential problems
y Risk minimisation
y Experience from other countries & UK
y Respiratory support service contract
y Analysis of hot line calls and lessons learned
Thorax
2006
Background
From a total of 1211 adult and paediatric patients receiving home ventilation (HV) supervised by Royal Brompton Hospital between 1/1/06 and 30/6/06 the respiratory support team received an average of 528 daytime calls/month and 14/month out of hours calls to a telephone helpline. Patients are spread throughout England and Wales
IMPORTANT INFORMATION REGARDING YOUR VENTILATOR
Type of ventilator: ...............................................................
Serial nos: ..............................................................................
Mask: .....................................................................................
Headgear: ...............................................................................
Urgency: .............NIGHTS 02 requirements (if needed) .................................................
Patient Signature……………………………………………
Patient Hospital Number:………………………………….
Contact telephone numbers in event of a breakdown/ventilator problem: 24 hour hotline ‐ 0207 351 8020 **We do ask if you could – when possible – call between 9.30 am and 4.30 pm. The technicians will explain the call out system to you at the time of your set up on the ventilator. Messages left during the night will be passed on to Smiths Medical the following morning** During office hours ‐ Monday to Friday Steve, Chief Respiratory Support Technician: 020 7352 8121 bleep 0009 Anna, Home Sleep Study Technician: 020 7352 8121 bleep 0014 Steve’s assistant : 020 7352 8121 bleep 0031 Maria, Respiratory Support Administrator: 020 7352 8121 bleep 0047 or ext 4054
Sister Elaine Pneh, Clinical Nurse Specialist ‐ 020 7352 8121 bleep 1047
Michelle Chatwin, Clinical Physiotherapy Specialist in NIV: 020 7352 8121 bleep 0004 Respiratory Support Co‐ordinator: 020 7351 8911 (tel/fax/ansaphone) MAINTENANCE AND SERVICE ARRANGEMENTS We have various arrangements providing a service for you and your ventilator in case of problems or a breakdown. An outline of these arrangements is set out below.
Regular servicing will be arranged by the company Smiths Medical who will arrange to visit you either once or twice a year, depending on which machine you have. You will be contacted when the service is due so that a convenient appointment can be made. Spare parts needing replacement as a routine (for example, the internal filters) will be fitted at these visits.
Emergency breakdowns may be reported by ringing our hotline number which is manned 24 hours/day, 365 days/year: 0207 351 8020. There should be very little delay (we ask for less than two hours) before an engineer calls you back to arrange a visit to carry out the repair (or lend you a spare machine if necessary). The time that visit actually takes place depends on how urgently you are thought, by your consultant, to need your machine repaired. In general problems occur at night and you are asked to report them before 10.00 am the next morning. In effect, one night has already been interrupted and some patients cannot cope with more than this. Others can easily manage two nights or three nights ‐
sometimes more. It is worth bearing in mind that "habit" and anxiety if a routine is interrupted are likely to influence your reactions to the prospect of machine failure.
IMPORTANT INFORMATION REGARDING YOUR VENTILATOR
Three categories of urgency have been identified therefore ‐ one, two or three nights. Those described as "one night" require service the same day if they report a fault ‐ usually patients who are 24 hour dependent on the ventilator.
New masks and headgear can be obtained by contacting Maria during the hours of 9‐12 or 1‐4 Monday to Friday. The masks last about a year and, in the interest of economy, we can issue no more than 2 masks/year. E‐mail: [email protected]
***Please note*** If you move or change your telephone number, it is ESSENTIAL that you notify the Respiratory Support Coordinator (020 7351 8911) of this change.
Please do not just tell the clinic/ward staff. This information does not always get filtered down to us. We do strongly recommend that your number is not listed as ex‐directory (particularly if you change your number from the original one registered with us). We may need to get into contact with you quickly and have had considerable problems in the past trying to contact patients urgently. Electricity supply: If you are 24 hour dependent on the ventilator, we will always provide a back up machine and/or battery pack. However, we do ask ALL patients who may have a slot meter (coin/card fed system) for electricity, that you ensure this does not fail and leave you unable to use the ventilator due to lack of power. If by now you feel too much information about you has been relayed too widely, please be reassured that all the companies involved are registered users under the Data Protection Act and each has only the information about you relevant to the service provided from that source.
PLEASE KEEP THIS INFORMATION FOR REFERENCE
Prioritisation
y
y
y
y
< 4 hours ventilator free time
1 night
2 night 3 night
Degree Of Urgency (nights)
1
17%
3
50%
2
33%
149 / 1211 (12.3%) required 2 ventilators for near 24 hour ventilator dependency
Diagnosis
Axonal Neuropathy
Diaphragmatic Weakness
Becker Muscular Dystrophy
Central Core Myopathy
Spina Bifida
Central Nuclear Myopathy
Charcot Marie Tooth
Spinal Muscular Atrophy
Congentital Muscular
Dystrophy
Spinal Cord Injury
Congenital Polyneuropathy
Post Polio
Central Hypoventilation
Syndrome
Neuropathy
Nemaline Myopathy
Duchenne Muscular
Dystrophy
Myotonic Dystrophy
Other
Myopathy
Emery Dreifuss Muscular
Dystrophy
Myasthenia Gravis
Lung Disease Other
Multiple Scleosis
Obesity
Motor Neurone Disease
Limb Girdle Muscular
Dystrophy
Hereditary Sensory Motor
Neuropathy
COPD
Bronchectasis Lung Disease
Neuromuscular disease
Upper Airw ay
Chest Wall Disease
99% received non‐invasive ventilation, 1% tracheostomy ventilation
Facio Scapular Humeral
Muscular Dystrophy
Neuromuscular diagnosis
Axonal Neuropathy
Diaphragmatic Weakness
Becker Muscular Dystrophy
Central Core Myopathy
Spina Bifida
Central Nuclear Myopathy
Charcot Marie Tooth
Spinal Muscular Atrophy
Congentital Muscular
Dystrophy
Spinal Cord Injury
Congenital Polyneuropathy
Post Polio
Neuropathy
Nemaline Myopathy
Duchenne Muscular
Dystrophy
Myotonic Dystrophy
Myopathy
Emery Dreifuss Muscular
Dystrophy
Myasthenia Gravis
Multiple Scleosis
Motor Neurone Disease
Limb Girdle Muscular
Dystrophy
Hereditary Sensory Motor
Neuropathy
Facio Scapular Humeral
Muscular Dystrophy
Type of ventilator
Volume
2%
Bilevel
pressure
50%
Single level
pressure
48%
VPAP II and III
27%
Bipap
Bipap ST Harmony
9%
20/30
8%
Breas Bilevel
1%
Breas single
level
25%
Nippy Bilevel
4%
Nippy 1
23%
DP90
1%
Old volume
2%
Calls to the emergency help line (out of hours over a 6 month period)
out of hours calls
(n=86)
Ventilator not working
19
Technical issue (alarming, not reaching pressure, noisy)
22
Equipment required (tubing, filters, mask spares)
23
Advice: emergency
2
Advice: non emergency
13
CPAP
5
Battery not working
1
Servicing
1
Reason for emergency visit (over a 6 month period)
Number of
home visits
(n=188)
Ventilator not working
52
Technical issue (alarming, not reaching pressure,
noisy)
43
Equipment required (tubing, filters, mask spares)
39
Circuit fitted incorrectly
9
Set up of ventilator at home
1
Patient did not like replacement vent
2
No fault
25
Hospital requested exchange
9
Patient changed settings by mistake
8
In 188 calls during the 6 month period a home visit was carried out because of ventilator or associated equipment‐related problems. Despite a regular equipment servicing programme, in 188 patients there was a technical problem with the equipment which was solved in the patient s home in 64% or required replacement/parts in 22%. no fault
14%
repalcament
equipment
22%
technical issues
sorted in the home
64%
Ventilator breakdowns and ventilator failures
PLV
(Respironics, USA)
8%
Saime (ResMed, Australia)
9%
Breas PV 401-403 (Breas,
Sw eden)
27%
NiIPPY Bilevel (B&D
electromedical, UK)
4%
Breas Bilevel (Breas,
Sw eden)
6%
NIPPY 1 (B&D
electromedical, UK)
22%
VPAP II and III (ResMed,
Australia)
8%
BiPAP Harmony
(Respironics, USA)
8%
BiPAP ST 20 / 30
(Respironics, USA)
8%
Percentage of call‐outs per ventilator taking into account quantity of each type of ventilator Br eas PV 401- 403 ( Br eas,
PLV ( Respir onics, USA)
Sweden)
24%
8%
NiIPPY Bilevel ( B&D
elect r omedical, UK)
7%
Br eas Bilevel ( Br eas,
Sweden)
NIPPY 1( B&D
38%
elect r omedical, UK)
7%
BiPAP ST 20 / 30
VPAP II and III ( ResMed,
( Respir onics, USA)
Aust r alia)
2%
BiPAP Har mony
( Respir onics, USA)
6%
8%
Patient
1
2
3
4
5
6
7
8
9
10
Ventilator
VPAP
Breas
VPAP
Breas
BiPAP
VPAP
NIPPY
1
NIPPY
ST
Breas
Breas
Hours used
6.5
18
7
23
12
4
16
9
10
15
Number of
Ventilators
1
1
1
2
1
1
1
1
1
1
Patient
11
12
13
14
15
16
17
18
19
20
Ventilator
NIPPY 1
VPAP
Breas
Breas
Breas
VPAP
VPAP
Saime
NIPPY 1
Breas
Hours used
7
10
13
24
12
3
5
7
10
16
Number of
Ventilators
1
1
1
2
1
1
1
1
1
1
No Fault
Of the 25 calls in which no fault was found, 13 patients were unwell at home or required call out during a hospital admission, 2 patients died within 1 month of identification of no fault. No patient was admitted as a result of technical failure of equipment. Conclusions
y There is a significant work load associated
with supporting Home ventilation patients.
y Patients/carers all received standard
competency training before discharge but other
calls may be reduced by a more flexible
problem-solving approach.
y Importantly, reports in which no technical fault
is found may indicate deteriorating health in the patient and require close follow-up.