Sleep apnoea: from person to patient, and back again
BMJ 2010; 340 doi: https://doi.org/10.1136/bmj.c360 (Published 30 March 2010) Cite this as: BMJ 2010;340:c360
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I am sorry that the appalling treatment which Peter Gøtzsche received
for sleep apnoea has moved him to publish such a negative view of CPAP
treatment. I would like an opportunity to put his remarks in context and
to deal with some of the inaccuracies. I have used CPAP therapy
successfully for the past 18 years, and I also chair the Sleep Apnoea
Trust Association, a national support group for sleep apnoea sufferers.
No one would pretend that CPAP is the easiest therapy to use - it can
be arduous, particularly in the early months. The key to successful long
term use is sensitive and caring treatment by the Sleep Unit, when the
patient is first introduced to CPAP. In particular the correct fitting of
a suitable mask is essential and the role of the trained sleep technician
or nurse is vital. Over the years we have been in contact with many
thousands of sleep apnoea patients through our helplines and conferences.
The overwhelming majority happily tolerate CPAP and are most grateful for
the difference which it has made to their lives, which are often
transformed after many years of sleep deprivation.
Your contributor seems worried about CPAP causing death in some way.
If this point is intended to be taken seriously, let me assure him that,
although all machines will fail occasionally, we have never heard of a
single person who died as a result. All that will happen is that the
patient wakes up. Sadly we have heard of many cases where patients have
died from complications arising from untreated sleep apnoea.
Your readers may wish to know that treatment for sleep apnoea is much
more accessible in England & Wales following NICE’s approval of CPAP
treatment two years ago; further information can be found on our website
www.sleep-apnoea-trust.org
Competing interests:
None declared
Competing interests: No competing interests
I read with some despair the management of Peter Gøtzsche's
obstructive sleep apnoea (OSA). However it does at least provide a
published record of how not to do it.
Many people have a degree of OSA, particularly when supine, as all
epidemiology studies have shown. However, only some are symptomatic, and
even fewer sufficiently so to warrant treatment. If a patient is not
sleepy, then they do not have obstructive sleep apnoea syndrome (OSAS),
only OSA, and usually do not require treatment (and neither is their
driving license at risk). Any potential cardiovascular benefits of
continuous positive airway pressure (CPAP) for asymptomatic OSA are poorly
researched (and any cardiovascular risk factors present are better treated
with well researched treatments such as antihypertensives and statins). If
there are symptoms, then a discussion must be had between patient and
sleep specialist as to whether the symptoms are bad enough to warrant
treatment with CPAP. The patient makes this decision, once in full
possession of the facts. Even then, the initial period on CPAP should be
regarded as an experiment to see if the benefits outweigh the
disadvantages, once again the patient decides. It is the sleep unit's
responsibility to train the user on the best way to use CPAP, and give all
the support necessary over the first weeks, and beyond, if necessary.
In the case of Peter Gøtzsche, none of this seems to have been done
properly, and I am not surprised he was left with very negative views over
sleep apnoea and CPAP. Luckily this is not usually the case, studies from
the UK show that the majority of patients stay on CPAP, using the device
on average for more than 5 hours per night. They would not do this if they
did not see a benefit. In 2008, NICE strongly approved CPAP for
symptomatic obstructive sleep apnoea, and there are over 100 thousand
regular users in the UK.
Competing interests:
None declared
Competing interests: No competing interests
Your review of sleep apnoea from the patient perspective was
descriptive but omitted a crucial issue FOR THE PATIENT.
In being referred for investigation of possible sleep apnoea
syndrome, most patients will undergo sleep studies.
This may show apnoeic episodes and support the diagnosis, in which
case the patient is likely to be offered CPAP.
The patient may chose not to accept this offer.
Alternatively, as reported for a large number of patients, he or she
may undergo a trial but may find it intolerable and discontinue it.
Alternatively he or she may find it effective and continue to use it
lifelong.
Only the last option will allow the patient to hold onto a driving
licence.
Having been diagnosed with sleep apnoea syndome all other options
will disqualify the patient from driving.
With current requirements this should be discussed with every patient
prior to referal.
Competing interests:
None declared
Competing interests: No competing interests
Sleep apnoea: the advantages of a multidisciplinary community based approach
Peter Gøtzsche describes clearly the challenges faced by patients
undergoing
CPAP treatment. Not only do patients with sleep apnoea have to come to
terms with the information that they have a chronic disease, but the
treatment is lifelong and is difficult to tolerate – at least initially.
Patients
need considerable help and support in the early stages, and without this
are
likely to abandon their machine1. Problems are most frequently encountered
with the interface between the patient and his machine – leaks from the
mask
and pressure are uncomfortable, disrupt sleep and reduce treatment
efficiency. Fears of suffocation are not uncommon and careful explanation
of
how the machine works are essential. Simply sending a patient home with a
CPAP machine without detailed training increases the likelihood of
treatment
failure, as patterns of adherence are established in the first week of
treatment and predict long term use2. Once a patient has given up CPAP
treatment, in our experience it is often very difficult to persuade them
to
retry.
Severe sleep apnoea, if untreated, increases cardiovascular mortality
and
morbidity. As sleep physicians we should aim to make the process of
starting
CPAP as painless as possible in order to maximise treatment adherence.
Modern CPAP machines monitor patient use, and as a result we know more
about adherence to CPAP than to pharmaceutical interventions. Compared to
self-reported adherence to cardiovascular medications in patients who have
coronary artery disease of <40%3, rates of objective CPAP adherence
(>4
hours per night) of 17-71% are not surprising1.
There is wide international variation in approaches to exploring
sleep apnoea
and initiating treatment. In France, sleep physicians work as part of a
multidisciplinary team with community based technicians who, after
prescription of the machine by the sleep physician, visit the patient at
home
to install the machine, and then contact and visit regularly to support
the
patient, modify the interface and monitor use. We believe that this
delivers
optimal machine use and increases patient satisfaction4, and would have
probably avoided many of Peter Gøtzsche’s distressing symptoms in the
first
few days of treatment.
In Peter Gøtzsche’s case, difficulties adapting to the machine were
confounded by the fact that CPAP was not indicated for his degree of sleep
apnoea. Fortunately his very negative view of treatment is not universal.
Symptomatic patients who have relief of their symptoms are more likely to
adhere to treatment, and many become enthusiastic proponents of CPAP. For
those who cannot tolerate CPAP treatment despite the best efforts of the
multidisciplinary team, recent advances in mandibular advancement devices
offer a second line of treatment, which can reduce apnoea events and
alleviate symptoms5.
1. Weaver T Grunstein R : Adherence to Continuous Positive Airway
Pressure
Therapy : the Challenge to Effective Treatment The Proceedings of the
American Thoracic Society 2008 ;5:173-178
2. Budhiraja R, Parthasarathy S, Drake CL, Roth T, Sharief I,
Budhiraja P,
Saunders V, Hudgel DW. Early CPAP use identifies subsequent adherence to
CPAP therapy. Sleep 2007;30:320–324
3. Newby LK, LaPointe NM, Chen AY, Kramer JM, Hammill BG, DeLong ER,
Muhlbaier LH, Califf RM. Long-term adherence to evidence-based secondary
prevention therapies in coronary artery disease. Circulation. 2006; 113:
203–
212.
4. Meurice JC, Ingrand P, Portier F, Arnulf I, Rakotonanahari D,
Fournier E,
Philip-Joet F, Veale D; A multicentre trial of education strategies at
CPAP
induction in the treatment of severe sleep apnoea-hypopnoea syndrome.
Sleep Med. 2007 Jan;8(1):37-42.
5. Gagnadoux F, Fleury B, Vielle B, Pételle B, Meslier N, N'Guyen XL,
Trzepizur W, Racineux JL. Titrated mandibular advancement versus positive
airway pressure for sleep apnoea. Eur Respir J. 2009 Oct;34(4):914-20
Competing interests:
None declared
Competing interests: No competing interests