M.M.L. (Madeleine) Jacobs
P.J. (Jos) Ruiters
We are two distressed sleep apnea patients, a risk manager/registered compliance professional and a quality manager, who are sounding the alarm regarding the alarmingly high rate of non-diagnosis of sleep apnea in the Netherlands. We have each suffered from undiagnosed severe sleep apnea for at least 6 years and over 20 years, respectively. Despite adequate signals and analysis – our profession, after all – we went undiagnosed by a range of different doctors in primary and secondary care for years. Until it finally emerged that we did indeed have severe apnea. See our LinkedIn profiles for more background on our professional backgrounds.
And this is not just about our experience. Adequate sleep apnea care is available in the Netherlands according to the state of medical science and practice. However, only a very small proportion of apnea patients access that care, it is estimated that approximately 70% of men and over 90% of women are never diagnosed or only diagnosed years later. This message is not new. In the foreword to our Research & Position Paper, we let emeritus professor Nico de Vries and the Apnea Association express this same message, back in 2019.
The difference with our Position Paper is that we substantiate why this is the case and identify the specific diagnostic barriers that account for this, and where diagnostic guidelines deviate widely from the state of medical science and practice. We map 15 barriers, of which just a single one (the exclusion criterion of “daytime sleepiness”) alone is responsible for the exclusion of diagnosis, especially in elderly and postmenopausal women over 60 years old, on a very large scale. One look at the picture and analysis accompanying Figure 1 on page 12 of our Position Paper – sourced from The Lancet Respiratory Medicine 2015 – speaks volumes. We also substantiate that this affects at least 2 million Dutch people, an unknown proportion of whom with severe symptoms are indeed like us, being failed by non- and misdiagnosis across the board.
On top of this, sleep apnea leads to very serious comorbid health damage, while the burden of suffering and mental and social strain (our analogy of the “Camp van Koningsbrugge” pack) is sky-high. Patients are completely unaware (apnea plays entirely in the subconscious) and are thus virtually helpless to escape this ordeal – because that is how we experienced it. Also, it is very inexpensive to prescreen and treat with mandibular advancement devices/CPAP, which have been listed as effective care for over 25 years.
So please read with us what accumulation of diagnostic barriers we are identifying and what win-win solution we are putting forward that will allow apnea patients to indeed have a fair chance of accessing care, without it having to cost the earth.