Fresh evidence of the scale and scope of long covid
BMJ 2021; 373 doi: https://doi.org/10.1136/bmj.n853 (Published 01 April 2021) Cite this as: BMJ 2021;373:n853Read our latest coverage of the coronavirus outbreak
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Post-covid syndrome in individuals admitted to hospital with covid-19
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Dear Editor,
Sivan et al’s editorial (1) and Ayoubkhani et al (2) helpfully describe the scale of adverse health outcomes for people hospitalised with COVID-19. We agree, that key questions are yet to be answered of this complex, heterogeneous patient group such as whether particular symptom clusters exist, the impact on disparities, and whether the young fit population are disproportionately affected (3).
For our health system to rise to the challenge of “long covid” we need to systematically record cases in primary care computerised medical record (CMR) systems. People with long covid are largely invisible to searches. There is every possibility that those who present and prospectively get flagged in record systems will be the more articulate and less deprived, further widening disparities.
In England, we have been slow to provide clinical terms that enable those with long covid to be recorded in CMR systems. However, we now have a schema for doing this provided by the National Institute for Health and Care Excellence (NICE) and now included in the SNOMED clinical terms:
• Acute COVID-19: signs and symptoms of COVID-19: ≤4 weeks.
• Ongoing symptomatic COVID-19: signs and symptoms of COVID-19: 4-12 weeks.
• Post-COVID-19 syndrome: signs and symptoms that develop during or after COVID-19, lasting >12 weeks and not explained by another diagnosis (4).
“Coding is caring” - we need a means to flag those with long COVID. We recommend people with long covid to have this coded as a “problem” (diagnosis) in their CMR. In England, we recommend that general practitioners use the “post-COVID-19 syndrome” SNOMED clinical term, and record the start date as three months after that person’s positive test date.
Please code correctly and caringly so we can collect the necessary real world evidence called for by Sivan et al to manage COVID-19 and its complicated sequelae.
References
1. Sivan M, Rayner C, Delaney B. Fresh evidence of the scale and scope of long covid. Vol. 373, BMJ. 2021.
2. Ayoubkhani D, Khunti K, Nafilyan V et al. Post-covid syndrome in individuals admitted to hospital with covid-19: retrospective cohort study. Vol. 373, BMJ. 2021
3. Sigfrid L, Drake TM, Pauley E et al. Long Covid in adults discharged from UK hospitals after Covid-19: A prospective, multicentre cohort study using the ISARIC WHO Clinical Characterisation Protocol. medRxiv, 2021.
4. National Institute for Health and Care Excellence (NICE). Overview | COVID-19 rapid guideline: managing the long-term effects of COVID-19 | Guidance | NICE, 2021.
Competing interests: SdeL is the Director of the Oxford-RCGP RSC and involved in COVID-19 research, including an AstraZeneca funded project (not related to long covid).
Dear Editor
We want to thank Sivan M et al. for their recent editorial in the BMJ (1). COVID-19 is challenging health systems worldwide and highlights some of their strengths and weaknesses, different from country to country. While the editorial focuses on the UK, the issues discussed impact the worldwide community. For this reason, we would like to contribute with a more global vision.
This editorial raises a series of important points. The iceberg of long-term illness is linked to acute care organisations that discharge to home patients who frequently end up either being readmitted to hospital or presenting with long covid. COVID-19 and long covid are now recognised as multi-organ diseases with a broad spectrum of acute and post-acute manifestations pertinent to multiple medical specialties (2). The single-specialty referral model fails to address this complexity, with the need for good generalist care by GPs and specialists to be identified. The authors discuss the UK “multispecialty long covid clinics”, where there is a lack of “specialist medical supervision” and “multidisciplinary teams”, and the “inappropriately lengthy or unidisciplinary pathways that lack the right skills to manage complexity”. Here “rehabilitation therapy teams” miss “appropriate medical support and leadership”. The conclusion is that the “most pressing need is for rapid learning to understand what represents good multidisciplinary care, informed by real-world outcome data and patient experience” (1).
The authors state that the hospital services predominantly focus on individual organ systems, with the only notable exceptions of elderly care, pain, and cancer services. From a worldwide perspective, the exceptions also include physical and rehabilitation medicine (PRM), called rehabilitation medicine in the UK, the medical specialty with a focus on functioning and disability (according to the World Health Organization [WHO] definitions) (3). The PRM approach goes beyond body structures and functions and considers the whole person and interactions with its environment (4). In 2019 the International Society of PRM published the Scope Book of PRM (5) following the 3rd edition of the White Book on PRM in Europe (6) published in 2018 by the European PRM Bodies Alliance. These reference books can contribute to broaden the opinions expressed in Sivan’s editorial to include a more global perspective.
Discharge home of patients “not-ill” any more responds to the single specialty perspective and current health systems’ mortality/morbidity indicators (and perspective). Physicians note recurrences because they impact health systems (7), while professionals hardly recognise patients reported long-term symptoms, and long covid is still not a well-defined diagnosis (8). Patients who are “not-ill” are frequently still not functioning well, according to the concept of functioning as the third health indicator (9) strongly supported by the WHO’s “Rehabilitation 2030: a call for action” initiative (10,11). Beyond COVID-19, for many diseases discharging “non-functioning” patients without a referral for rehabilitation can lead to further deterioration and other complications and illnesses (12). The quality of life of these survivors is further compromised, increasing the cost to societies (13). For years it has been known that rehabilitation reduces all these adverse outcomes (12).
By definition, rehabilitation is multiprofessional and requires an interdisciplinary approach based on coordinated teams. PRM specialists are the physicians trained in the multifaceted aspects of rehabilitation and on managing these multidisciplinary (medical “organ-based” specialties) and multiprofessional (different rehabilitation professionals) teams. PRM physicians focus on the needs of persons experiencing disability, with their multiple comorbidities (14), to reduce them as much as possible and improve their level of activity and participation (4). They are specifically trained to approach a broad spectrum of organ involvements like those of patients who have survived (or are suffering) COVID-19. Worldwide PRM physicians work in all the health systems settings: acute to prevent secondary dysfunctions, post-acute to improve functioning in the most effective “opportunity window” for enhancing spontaneous recovery, and chronic to maintain or optimise functioning over time (15). In most of the countries, there are no “multispecialty long covid clinics” but post-acute rehabilitation services with PRM physicians who provide the “specialist medical supervision” and manage the “multidisciplinary teams” for COVID-19 patients. The need to address ”inappropriately lengthy or unidisciplinary pathways” is directly related to the need to upscale rehabilitation in all health systems as recommended by the WHO (11,16).
The challenges created by COVID-19 will change health systems worldwide. They should lead to a better appreciation of the central role of rehabilitation and the medical specialty of PRM because its focus is on the person and associated functional capacity and not only on the structure and function of a specific organ. According to the European PRM bodies, in the UK, PRM physicians (called rehabilitation medicine specialists) represent 0.2% of all specialists and 0.1% of physicians versus 1.7% and 0.9% in the other 38 censed European countries, respectively (17). The UK ranks above Ireland and Ukraine only. The BMJ is leading a battle for patients and their needs in the UK NHS. We believe that part of this battle should be fought to promote rehabilitation and PRM (rehabilitation medicine) inside the NHS. We do not believe it is a coincidence that the primary author of this paper is a UK rehabilitation medicine specialist.
References
1. Sivan M, Rayner C, Delaney B. Fresh evidence of the scale and scope of long covid. BMJ. 2021 Apr 1;373:n853. doi: 10.1136/bmj.n853.
2. Nalbandian A, Sehgal K, Gupta A, Madhavan MV, McGroder C, Stevens JS, Cook JR, Nordvig AS, Shalev D, Sehrawat TS, Ahluwalia N, Bikdeli B, Dietz D, Der-Nigoghossian C, Liyanage-Don N, Rosner GF, Bernstein EJ, Mohan S, Beckley AA, Seres DS, Choueiri TK, Uriel N, Ausiello JC, Accili D, Freedberg DE, Baldwin M, Schwartz A, Brodie D, Garcia CK, Elkind MSV, Connors JM, Bilezikian JP, Landry DW, Wan EY. Post-acute COVID-19 syndrome. Nat Med. 2021 Mar 22. doi: 10.1038/s41591-021-01283-z. Epub ahead of print.
3. World Health Organization. International Classification of Functioning, Disability and Health. https://www.who.int/standards/classifications/international-classificati.... Accessed April 13th, 2021.
4. European Physical and Rehabilitation Medicine Bodies Alliance. White Book on Physical and Rehabilitation Medicine (PRM) in Europe. Chapter 3. A primary medical specialty: the fundamentals of PRM. Eur J Phys Rehabil Med. 2018 Apr;54(2):177-185. doi: 10.23736/S1973-9087.18.05146-8.
5. International Society of Physical and Rehabilitation Medicine. The Scope Book of Physical and Rehabilitation Medicine. Journal of the International Society of Physical and Rehabilitation Medicine 2019 June 11;2(5s):1-158.
6. European Physical and Rehabilitation Medicine Bodies Alliance. White Book on Physical and Rehabilitation Medicine in Europe. Introductions, Executive Summary, and Methodology. Eur J Phys Rehabil Med. 2018 Apr;54(2):125-155. doi: 10.23736/S1973-9087.18.05143-2.
7. Ayoubkhani D, Khunti K, Nafilyan V, Maddox T, Humberstone B, Diamond I, Banerjee A. Post-covid syndrome in individuals admitted to hospital with covid-19: retrospective cohort study. BMJ. 2021 Mar 31;372:n693. doi: 10.1136/bmj.n693.
8. National Institute for Health and Care Excellence (NICE). COVID-19 rapid guideline: managing the long-term effects of COVID-19. https://www.nice.org.uk/guidance/ng188. Accessed April 13th, 2021.
9. Stucki G, Bickenbach J. Functioning: the third health indicator in the health system and the key indicator for rehabilitation. Eur J Phys Rehabil Med. 2017 Feb;53(1):134-138. doi: 10.23736/S1973-9087.17.04565-8. Epub 2017 Jan 24.
10. Krug E, Cieza A. Strengthening health systems to provide rehabilitation services. Bull World Health Organ. 2017 Mar 1;95(3):167. doi: 10.2471/BLT.17.191809.
11. World Health Organization. Rehabilitation 2030. https://www.who.int/rehabilitation/rehab-2030/en/. Accessed April 13th, 2021.
12. European Physical and Rehabilitation Medicine Bodies Alliance. White Book on Physical and Rehabilitation Medicine in Europe. Chapter 2. Why rehabilitation is needed by individual and society. Eur J Phys Rehabil Med. 2018 Apr;54(2):166-176. doi: 10.23736/S1973-9087.18.05145-6.
13. Cieza A, Causey K, Kamenov K, Hanson SW, Chatterji S, Vos T. Global estimates of the need for rehabilitation based on the Global Burden of Disease study 2019: a systematic analysis for the Global Burden of Disease Study 2019. Lancet. 2021 Dec 19;396(10267):2006-2017. doi: 10.1016/S0140-6736(20)32340-0. Epub 2020 Dec 1. Erratum in: Lancet. 2020 Dec 4;.
14. European Physical and Rehabilitation Medicine Bodies Alliance. White Book on Physical and Rehabilitation Medicine (PRM) in Europe. Chapter 6. Knowledge and skills of PRM physicians. Eur J Phys Rehabil Med. 2018 Apr;54(2):214-229. doi: 10.23736/S1973-9087.18.05150-X.
15. European Physical and Rehabilitation Medicine Bodies Alliance. White Book on Physical and Rehabilitation Medicine (PRM) in Europe. Chapter 8. The PRM specialty in the healthcare system and society. Eur J Phys Rehabil Med. 2018 Apr;54(2):261-278. doi: 10.23736/S1973-9087.18.05152-3.
16. World Health Organization. Rehabilitation and COVID-19. https://www.who.int/teams/noncommunicable-diseases/covid-19/rehabilitation. Accessed April 13th, 2021
17. European Physical and Rehabilitation Medicine Bodies Alliance. White Book on Physical and Rehabilitation Medicine (PRM) in Europe. Chapter 5. The PRM organisations in Europe: structure and activities. Eur J Phys Rehabil Med. 2018 Apr;54(2):198-213. doi: 10.23736/S1973-9087.18.05149-3.
Competing interests: No competing interests
Re: Fresh evidence of the scale and scope of long covid
Dear Editor
In reference to the commentary by Sivan, Ranyer and Delaney “The NHS must reconfigure services to manage enduring multimorbidity following covid-19” the challenges maybe even greater than those described. Certainly, breaking down the tendency for physicians to focus on the system in which they have developed particular expertise is important. Teams with a high proportion of therapists and medical staff willing and able to address symptoms related to multiple systems will be essential. The ‘guiding hand’ that is often absent when patients attend multiple clinics separately to discuss uncoordinated management plans will need to be both visible and effective. An additional skillset will include familiarity with ‘functional’ or medically unexplained symptoms. Although Ayoubkhani et al’s study showed a high prevalence of new post-covid diagnoses (e.g. diabetes, kidney disease, cardiovascular events), early experience does suggest that symptoms may be disproportionate to observable organ dysfunction in up to 30% of patients [1] [2]. A large Chinese study found that the main symptoms were fatigue, muscle weakness, sleep difficulties, and anxiety/depression [3]. Few system-based specialists are equipped to help with these. Although there is increasing evidence that subtle chemical and biological changes do underpin many functional conditions, physicians are often quick to discharge patients from the clinic back to primary care with advice once one has been diagnosed [4][5]. This will not suffice for patients with post-covid-19 syndrome.
Beyond clinical skills, the existing economic model may need to be altered. Currently, secondary care clinics look for ways to reduce their new-to-follow up ratios by discharging patients after one or two visits. There are significant financial incentives for such ‘quick turnarounds’, as payment to providers is not proportionate to the number of attendances or investigations. This arrangement comes under a ‘payment by results’ (PBR) model, but this is not the same as ‘payment by outcomes’. The financial transaction is not related to ultimate cure or improvement. In this new and challenging area of medicine where achievable clinical outcomes are still poorly understood, subjective improvement in symptom burden should to be a key marker of successful management. Formal use of patient reported outcome measures (PROMs) remains poorly developed in primary and secondary care, despite their collection by providers since 2009 [6]. If there was ever a condition where their use should be prioritised, and traditional economic models challenged, it is post-covid-19.
1. Ayoubkhani D, Khunti K, Nafilyan V, Maddox T, Humberstone B, Diamond I, Banerjee A. Post-covid syndrome in individuals admitted to hospital with covid-19: retrospective cohort study. BMJ. 2021 Mar 31;372:n693
2. Dennis A, Wamil M, Alberts J, Oben J, Cuthbertson DJ, Wootton D, Crooks M, Gabbay M, Brady M, Hishmeh L, Attree E, Heightman M, Banerjee R, Banerjee A; COVERSCAN study investigators. Multiorgan impairment in low-risk individuals with post-COVID-19 syndrome: a prospective, community-based study. BMJ Open. 2021 Mar 30;11(3):e048391.
3. Huang C, Huang L, Wang Y, Li X, Ren L, Gu X, Kang L, Guo L, Liu M, Zhou X, Luo J, Huang Z, Tu S, Zhao Y, Chen L, Xu D, Li Y, Li C, Peng L, Li Y, Xie W, Cui D, Shang L, Fan G, Xu J, Wang G, Wang Y, Zhong J, Wang C, Wang J, Zhang D, Cao B. 6-month consequences of COVID-19 in patients discharged from hospital: a cohort study. Lancet. 2021 Jan 16;397(10270):220-232.
4. Bransfield RC, Friedman KJ. Differentiating Psychosomatic, Somatopsychic, Multisystem Illnesses, and Medical Uncertainty. Healthcare (Basel). 2019 Oct 8;7(4):114.
5. Ng QX, Soh AYS, Loke W, Lim DY, Yeo WS. The role of inflammation in irritable bowel syndrome (IBS). J Inflamm Res. 2018 Sep 21;11:345-349.
6. Timmins N. NHS goes to the PROMS. BMJ. 2008 Jun 28;336(7659):1464-5.
Competing interests: No competing interests