Anita K Simonds 1 st 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 NEJM 344:533 2001 Number 7 Baltimore, MD 21287
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 Equipment performance and safety Equipment supplies Patient and family/carer competency Medical competency Anticipation of problems
Risk management in the home ventilator dependent patient Whose responsibility? Potential problems Risk minimisation Experience from other countries & UK Respiratory support service contract 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: spares@rbht.nhs.uk ***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 < 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 Spina Bifida Axonal Neuropathy Diaphragmatic Weakness Becker Muscular Dystrophy Central Core Myopathy Central Nuclear Myopathy Spinal Muscular Atrophy Charcot Marie Tooth Congentital Muscular Spinal Cord Injury Dystrophy Congenital Polyneuropathy Post Polio Central Hypoventilation Syndrome Neuropathy Nemaline Myopathy Other Myotonic Dystrophy Myopathy Duchenne Muscular Dystrophy Lung Disease Other Obesity Myasthenia Gravis Multiple Scleosis Motor Neurone Disease Limb Girdle Muscular Dystrophy Hereditary Sensory Motor Neuropathy Emery Dreifuss Muscular Dystrophy Facio Scapular Humeral Muscular Dystrophy COPD Bronchectasis Lung Disease Neuromuscular disease Upper Airw ay Chest Wall Disease 99% received non invasive ventilation, 1% tracheostomy ventilation
Neuromuscular diagnosis Spina Bifida Axonal Neuropathy Diaphragmatic Weakness Becker Muscular Dystrophy Central Core Myopathy Central Nuclear Myopathy Spinal Muscular Atrophy Charcot Marie Tooth Spinal Cord Injury Congentital Muscular Dystrophy Post Polio Congenital Polyneuropathy Neuropathy Nemaline Myopathy Myotonic Dystrophy Myopathy Myasthenia Gravis Multiple Scleosis Motor Neurone Disease Limb Girdle Muscular Dystrophy Hereditary Sensory Motor Neuropathy Duchenne Muscular Dystrophy Emery Dreifuss Muscular Dystrophy Facio Scapular Humeral Muscular Dystrophy
Type of ventilator Volume 2% Single level pressure 48% Bilevel pressure 50% VPAP II and III 27% Bipap ST 20/30 8% Bipap Harmony 9% Breas Bilevel 1% Nippy Bilevel 4% Nippy 1 23% DP90 1% Old volume 2% Breas single level 25%
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 Saime (ResMed, Australia) 9% PLV (Respironics, USA) 8% 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 PLV (Respironics, USA) 24% Breas PV 401-403 (Breas, Sweden) 8% NiIPPY Bilevel (B&D elect romedical, UK) 7% NIPPY 1 (B&D elect romedical, UK) 7% VPAP II and III (ResMed, Australia) 2% BiPAP Harmony (Respironics, USA) 6% BiPAP ST 20 / 30 (Respironics, USA) 8% Breas Bilevel (Breas, Sweden) 38%
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 There is a significant work load associated with supporting Home ventilation patients. Patients/carers all received standard competency training before discharge but other calls may be reduced by a more flexible problem-solving approach. Importantly, reports in which no technical fault is found may indicate deteriorating health in the patient and require close follow-up.