>Research & Position Paper |Update March 21, 2024 | www.stop-apneu-non-diagnose.nl | www.stop-apnea-non-diagnosis.com

Structural Non-Diagnosis & Misdiagnosis of Sleep Apnea in the Medical Primary Care Order in the Netherlands

M Jacobs, J Ruiters

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Summary : Three crucial misconceptions in the 2014 NHG Sleep Problems Guideline for Sleep Apnea           

This Research & Position paper underpins a recent complaint by two severe sleep apnea patients (after suffering under non diagnosis for 10 and 20 years respectively) to the Healthcare and Youth Inspectorate in the Netherlands, regarding the structurally high non-diagnosis and misdiagnosis of sleep apnea in primary care in the Netherlands.
The concern about apnea non-diagnosis is not at all new. Already in 2019, the Dutch Apnea Association and Dutch professor, ENT Doctor Nico de Vries talked about at least 400,000 undiagnosed apnea patients and diagnoses that are never made, or sometimes happen only many years later. Furthermore, they mention health risks for the individual and society, comparable to smoking and annual costs to society in the order of Euro 1.5 billion.

What is new in this study, however, is that it identifies the causes of the relatively very high rate of misdiagnosis in the Netherlands (an estimated 80% on average and 90% for women), underpinned by > 70 references to recent medical academic research. The core problem lies in three crucial misconceptions, in the meantime superseded by academic research in the NHG 2014 Sleep problems guideline for the purpose of the sleep apnea diagnosis at the General Practioner:

1. More recent academic prevalence research (Heinzer, 2015[i] , Fietze, 2018[ii] , Benjafield, 2019[iii] ) strongly emphasises that sleep apnea is highly prevalent and increases sharply with age. Writers substantiate that there should be at least 2 million undiagnosed apnea patients based on the Dutch population structure, significantly in excess of what is assumed in guidelines to date (NHG 2014 suggests probably 0.45 to 4% in men, and even lower in women).
2. Writers identify 15 diagnostic barriers, particularly in the NHG 2014 Sleep Problems Diagnostic Guideline for General Practitioners, but also in the Dutch science medical research commitment, in the testing, doctors education and in the understanding and knowledge and priority of sleep apnea. One of those 15 diagnostic barriers explains the lion’s share of misdiagnosis and that is the exclusion criterion “daytime sleepiness”. Writers cite numerous academic research that supports that not only, does only a very small proportion (ca 13 to 17%) of patients bring this up at anamneses [iv] [v] [vi] [vii] [viii] , but also that it does not provide a significant/correct indication of the severity of the apnea condition[ix] [x] [xi], while in terms of the major medical risk this is essential. Also, there is research showing that although the criterion provides a significant indication at age 40, it does not at age 60[xii] , while there is even an outright negative correlation for women[xiii] .
3. The third major issue in the NHG GP diagnostic guideline is the assertion that “common insomnia is more common later in life and in women” and would therefore be “normal”. More recent research materially refutes this assumption as well. Heinzer[xiv] showed already in 2015 that, on the contrary, after the age of 60, the prevalence of sleep apnea increases very significantly for moderate and more severe apnea, for men by over 70% and for women even by almost 300% (…). Fietze[xv] comes to the same conclusion in the 2018 German study: “the prevalence increased with age for men and women with, however, later onset for women”. Heinzer, in his sample in Lausanne cf. the latest AASM criteria and techniques (since 2012), measured apnea in more than 60% of men and 33% of women aged 60-85 yr. Figure 1 of the Heinzer study below shows how the criterion of “daytime sleepiness” not only completely masks this exceptionally large increase, but also reverses the trend of strong growth related to age by 180 degrees.

Heinzer, Hypnolaus study

• The counter could be that 2 million people could potentially bring a large cost impact, but this study specifically advocates, in accordance with the official international apnea consensus[xvi], that in particular the part that reports with the GP with relevant and matching complaints, is no longer mis diagnosed. Furthermore, diagnosis and treatment are also offset by significant savings, because sleep apnoea, especially in the more severe segment, leads to a very large comorbid health, personal and societal damage (ranging from metabolic syndrome, diabetes, cardiovascular diseases and very likely dementia, burnout, depression, suicide, relationship breakdown, loss of home, to also in societal terms to workers absenteeism, disability, loss of paid work, seizure of social benefits, WIA fines for employers, etc.).
• We understand that there are major challenges in keeping the medical costs manageable, but frankly, we note that it is of a totally different order when patients with cardiovascular disease, cancer or ALS are assisted by doctors and nurses with all compassion and diagnosis and care, with possibly the sad constraint that certain lifesaving or disproportionately expensive care may unfortunately not yet be available.
  • Here we are talking about patients who are consciously turned away by the medical system in very large numbers for their serious comorbid medical condition, which also causes them to wither away personally and socially.
  • Effectively, the misdiagnosis labels patients mistakenly with a mental deficiency or puts the blame on the patient’s work or private life, the very two fundamental shaky pillars that the patient still tries to balance on.
  • In effect, the medical system, with its very high built-in barriers to diagnosis, is turning the “locked-in” element of the sleep apnea against the patient. After all, it well known that apnea plays in the deep subconscious, and that patients have almost no way to link their daytime suffering to what happens during the night.
  • What is even more disturbing is that sleep apnea is very cheap and easy to pre-screen and treat (one-off overnight blood saturation pre-screening €140 and €5-7 per week respectively) with proven effective and cost-effective MRA/CPAP care.
• Writers note that is neither in the letter nor in the spirit of the Dutch Care Act law, to on the one hand provide care for serious medical conditions according to the state of medical science and practice (NHG guideline 2018), whilst on the other hand applying a diagnostic filter (NHG GP guideline 2014) that excludes the vast majority of patients unfairly from medically essential care (and especially disproportionately vulnerable groups like the elderly and postmenopausal women). But that is what is effectively happening in practice.

The problem is, however, that the Dutch GP Association responsible for the medical protocols, has decided to do an only limited update of this 2014 guideline to GP’s in July 2024 for the next 10 years, quote: “In this revision, mainly the section on insomnia will be revised” and “The section on OSA will only be revised in a limited way so that in terms of background information and definitions of terms, it is again in line with the now revised multidisciplinary guideline on Obstructive Sleep Apnea in adults (2018) “. NB, aimed at medical specialists, áfter diagnosis. As a result, there is a high probability that the same problem will repeat itself for another 10 years, adding up to hundreds of thousands of patients being denied vital care and being kept in the dark, completely unaware of the avoidable dire consequences of sleep apnea.

With the academic research 2006-2021 we provide here, it can be established in retrospect that the current 2014 NHG guideline Sleep Problems for GP’s with regard to apnea, has been a clear medical misguidance and a great medical injustice for ten years. Writers take the position for the benefit of other undiagnosed apnea patients, that at least for the future, this should be rectified. In the upcoming NHG guideline update for GP’s. With today’s knowledge, these 3 crucial misconceptions should not be repeated again. In the future, undiagnosed apnea patients in the Netherlands who report to their GP with relevant complaints, should be given a fair and equitable chance of sleep apnea diagnosis.

Common insomnia and “Expectatief Beleid[xvii]” (with the implication of not getting a referral to a sleep study) should not anymore be automatically presumed for patients presenting with the combination of an unexplained sleep disturbance and an unexplained material reduced capacity to deal with work/social demands. Given the high prevalences of Heinzer, Fietze and Benjafield, for all 40+ patients and especially 60+ elderly and postmenopausal women patients presenting themselves with complaints at their GP, sleep apnea must first be ruled out and pre-screened with the overnight blood saturation measurement which costs just 140 euro. 

Foreword: an advance message to the reader, building on the insights of Professor Nico de Vries and the Dutch Apnea Association.

Although qualified from our studies and profession as independent analysts, with years of experience in what can go wrong in processes and risk management and also familiar with the test of ethics and compliance with laws and guidelines, we remain, of course, laymen in medical research. Therefore, our request to the reader is to read two external trusted sources beforehand, whose storyline is quite closely aligned to what we chart here in this study. These are an interview with special professor-ENT doctor Nico de Vries in the Dutch Algemeen Dagblad from five years ago and, in addition, a leaflet from the Apnea Association, also from 2019.

Here is the link of the 2019 AD article with professor Nico de Vries : [xviii]https://www.ad.nl/binnenland/chronisch-snurkprobleem-apneu-kost-ons-1-5-miljard-euro~a3eb9c61/#:~:text=American%20research%20shows%20that,often%20tired%20and%20extremely%20sleepy.

Some of Professor De Vries’ most relevant quotes in a row: “sleep apnea is seriously underestimated by patients and doctors”, “…complaints include impotence, poor concentration, high blood pressure and an increased risk of vascular disease and cerebral infarction”, “… the health risks are comparable to those of smoking”, “… often the symptoms are treated, but the doctor does not look at the underlying cause”, “… people may never receive the sleep apnea diagnosis, or only many years after its onset.”, “… this costs (society) an estimated 1.5 billion euros a year”. But also, and this is an important sentence for this commentary: “… because of the high costs, insurers are not particularly keen on proactively tracking down patients with sleep apnea..”.

The Apnea Association’s brochure[xix] can be found here  https://apneuvereniging.nl/wp-content/uploads/2019/01/Zou-ik-apneu-hebben%E2%80%932019.pdf

 Some of the quotes in a row:

Quotation explanation

[i] Heinzer R, Vat S, Marques-Vidal P, Marti-Soler H, Andries D, Tobback N, Mooser V, Preisig M, Malhotra A, Waeber G, Vollenweider P, Tafti M, Haba-Rubio J. Prevalence of sleep-disordered breathing in the general population: the HypnoLaus study. Lancet Respir Med. 2015 Apr;3(4):310-8. doi: 10.1016/S2213-2600(15)00043-0. Epub 2015 Feb 12. PMID: 25682233; PMCID: PMC4404207.

[ii] Fietze I, Laharnar N, Obst A, Ewert R, Felix SB, Garcia C, Gläser S, Glos M, Schmidt CO, Stubbe B, Völzke H, Zimmermann S, Penzel T. Prevalence and association analysis of obstructive sleep apnea with gender and age differences – Results of SHIP-Trend. J Sleep Res. 2019 Oct;28(5):e12770. doi: 10.1111/jsr.12770. Epub 2018 Oct 1. PMID: 30272383.

[iii] Benjafield AV, Ayas NT, Eastwood PR, Heinzer R, Ip MSM, Morrell MJ, Nunez CM, Patel SR, Penzel T, Pépin JL, Peppard PE, Sinha S, Tufik S, Valentine K, Malhotra A. Estimation of the global prevalence and burden of obstructive sleep apnea: a literature-based analysis. Lancet Respir Med. 2019 Aug;7(8):687-698. doi: 10.1016/S2213-2600(19)30198-5. Epub 2019 Jul 9. PMID: 31300334; PMCID: PMC7007763.

[iv] NHG 2018 guideline OSA in Adults (this is not the guideline for diagnosis for the benefit of GPs, but intended for medical specialists, after diagnosis) https://richtlijnendatabase.nl/richtlijn/osa_bij_volwassenen/startpagina_-_obstructief_slaapapneu_osa.html

[v] Heinzer R et al. Prevalence of sleep-disordered breathing in the general population: the HypnoLaus study. Lancet Respir Med. 2015 Apr;3(4)

[vi] Gottlieb DJ, Punjabi NM. Diagnosis and Management of Obstructive Sleep Apnea: A Review. JAMA. 2020 Apr 14;323(14):1389-1400. doi: 10.1001/jama.2020.3514. PMID: 32286648.

[vii] Dolliner P, Brammen L, Graf S, Huelsmann M, Stiebellehner L, Gleiss A, Ubl P, Steurer G. Portable recording for detecting sleep disorder breathing in patients under the care of a heart failure clinic. Clin Res Cardiol. 2013 Jul;102(7):535-42. doi: 10.1007/s00392-013-0563-4. Epub 2013 Apr 12. PMID: 23579765.

[viii] Honig E, Green A, Dagan Y. Gender differences in the sleep variables contributing to excessive daytime sleepiness among patients with obstructive sleep apnea. Sleep Breath. 2021 Dec;25(4):1837-1842. doi: 10.1007/s11325-020-02276-x. Epub 2021 Jan 19. PMID: 33464468; PMCID: PMC8590667.

[ix]   Honig E, Green A, Dagan Y. Gender differences in the sleep variables contributing to excessive daytime sleepiness among patients with obstructive sleep apnea. Sleep Breath. 2021 Dec;25(4):1837-1842. doi: 10.1007/s11325-020-02276-x. Epub 2021 Jan 19. PMID: 33464468; PMCID: PMC8590667.

[x] Garbarino S, Scoditti E, Lanteri P, Conte L, Magnavita N, Toraldo DM. Obstructive Sleep Apnea With or Without Excessive Daytime Sleepiness: Clinical and Experimental Data-Driven Phenotyping. Front Neurol. 2018 Jun 27;9:505. doi: 10.3389/fneur.2018.00505. PMID: 29997573; PMCID: PMC6030350.

[xi] Taranto Montemurro L. The enigma of severe obstructive sleep apnea without sleepiness. J Clin Hypertens (Greenwich). 2019 Mar;21(3):397-398. doi: 10.1111/jch.13480. Epub 2019 Feb 6. PMID: 30724468; PMCID: PMC8030566.

[xii] Morrell MJ, Finn L, McMillan A, Peppard PE. The impact of ageing and sex on the association between sleepiness and sleep disordered breathing. Eur Respir J. 2012 Aug;40(2):386-93. doi: 10.1183/09031936.00177411. Epub 2012 Jan 12. PMID: 22241742; PMCID: PMC3608395.

[xiii]   Honig E, Green A, Dagan Y. Gender differences in the sleep variables contributing to excessive daytime sleepiness among patients with obstructive sleep apnea. Sleep Breath. 2021 Dec;25(4):1837-1842. doi: 10.1007/s11325-020-02276-x. Epub 2021 Jan 19. PMID: 33464468; PMCID: PMC8590667.

[xiv] See Figure 1 Heinzer, 2015, reproduced with explanation on page 12 of this paper.

[xv] Fietze I, Laharnar N, Obst A, Ewert R, Felix SB, Garcia C, Gläser S, Glos M, Schmidt CO, Stubbe B, Völzke H, Zimmermann S, Penzel T. Prevalence and association analysis of obstructive sleep apnea with gender and age differences – Results of SHIP-Trend. J Sleep Res. 2019 Oct;28(5):e12770. doi: 10.1111/jsr.12770. Epub 2018 Oct 1. PMID: 30272383.

[xvi] Chang JL, Goldberg AN, Alt JA, et al. International Consensus Statement on Obstructive Sleep Apnea. Int Forum Allergy Rhinol. 2023; 13: 1061-1482. https://doi.org/10.1002/alr.23079. See IV.C.4Genetics

[xvii] https://www.ordz.nl/huisartsen/documenten/publicaties/2023/09/11/verwijsafspraken-processchema

[xviii] https://www.ad.nl/binnenland/chronisch-snurkprobleem-apneu-kost-ons-1-5-miljard-euro~a3eb9c61/#:~:text=American%20research%20shows%20that,often%20tired%20and%20extremely%20sleepy.

[xix] https://apneuvereniging.nl/wp-content/uploads/2019/01/Zou-ik-apneu-hebben%E2%80%932019.pdf