Delayed treatment has been a crucial issue
As of 24 August 2020, 242,899 people in France, roughly 3‰ of the population, had tested positive for SARS-Cov-2.  The real number has been estimated to potentially be as high as 5% by the Pasteur Institute.  The death toll of 30,496 patients represents an unadjusted mortality rate of 12.6%. 
The government implemented lockdown policies from 17 March to 11 May, and all schools and universities closed.  As patients with a chronic kidney disease (CKD), we were immediately identified as vulnerable by health authorities and advised to apply strict isolation measures.  Where remote working was impossible, sick leave was granted and extended to patients’ immediate carers. Furloughing enabled us to earn at least 84% of our net salary during the acute phase of the pandemic.
Currently, it is thought that 1.3% of kidney recipients and 4% of dialysis patients have been infected with covid-19 in France.  At first sight these numbers look good, when one considers the risk of infection in immunocompromised patients and the need for them to attend dialysis units at a time when most healthcare departments were full with covid-19 patients, and personal protective equipment was limited. But a large online survey undertaken between 22 June 12 July carried out by Renaloo [http://www.renaloo.com, an association for patients with kidney disease], suggests otherwise. Two thousand and thirty patients with a renal condition, living in all the French regions, including overseas territories, answered questions on their social and medical status, their perception of risk to themselves, and their behavior. Of these, 100 (5%) had been either diagnosed with covid-19 (1.7%) or were suspected to have contracted the disease (3.3%). Twenty-five had been hospitalized, of which six who needed intensive care (all survived the virus since they replied after returning home).
Most of the respondents had end-stage renal disease [ESRD]: of these, two thirds were living with a functioning graft compared to 45% in the whole French ESRD population. Fifty-seven percent of ESRD-free respondents had stage 4/5 CKD. When compared to the typical renal patient, respondents were younger, more likely to be female, and had a higher level of education. Half were employed and of these most were able to follow the official guidelines to work from home or reduced working hours. This was not the case for people who are self-employed or healthcare professionals.
The survey data indicate some key learning points:
- There is a high perceived level of risk (86% of respondents reported that their own risk was likely higher than that of an age-adjusted control), and many voluntarily isolated themselves. They also strictly observed or exceeded the legally approved stipulation of going out of their homes for only “one hour per day” announced on 17 March, with two thirds of patients going out only once per week. Sixty percent of dialysis patients feared ambulance transport and more than half still won’t commute, with the same proportion regretting that social distancing measures are not sufficiently respected. Educational level was directly associated with anxiety but also with better acceptance of isolation.
- Dehumanization of care aggravated patients anxiety: 86% of patients on dialysis and attending their usual units were not provided by a meal and most were forbidden to bring their own food.
- A lack of access to healthcare (renal or other, scheduled or not) was high (73%) and was mostly (86%) the consequence of a medical or institutional decision.
- Patients reported a notable lack of direct communication from their doctors or health providers. Only a third had had any contact with their nephrologist during the 2-month lockdown, and a quarter of respondents on the renal transplant waiting list had not even been informed of the suspension of adult kidney transplantation. To keep informed many went to alternate sources of intelligence, including patients’ associations, social media, and news. Renaloo put out 33 posts during the survey period, with a total of 74 so far about the covid-19 pandemic.
- Most follow up has been remote but the majority of patients have deemed this to be satisfactory which likely reflects some trust in the health care system. But more than half are still anxious about reduced prospects for getting a transplant as the pandemic continues.
As a community, patients with chronic kidney disease face many challenges. During covid-19 morbidity and mortality rates from covid-19 are high (19.6% in kidney recipients infected with SARS-Cov-2 and 19.1% in patients on dialysis).  Our risk is compounded by the fact that we are not being as closely monitored as usual. Despite the wide availability of modern communication tools, few are patient-centered and contact between health professionals and patients has been erratic.
We are aware that the sample who responded to our online survey will have excluded underprivileged people and those with no regular access to the internet and it’s likely that their experience during the pandemic has been worse. It’s time to listen to the patients.
A comparison with the activity of kidney transplantation from previous years in France suggests that around 600 kidneys were “lost” during the acute phase of the pandemic.  When adult kidney transplantation was resumed under stringent conditions, we were surprised that the medical community had not reached a common position on policy (some hospital resumed services and others did not) and none of the several patients’ associations representing CKD were ever involved in the decision of when and how transplantation would begin again.
We believe the time has come to place a higher value on the role of patients’ associations, in every medical discipline. Increasingly patients networked with and are supported by these associations and they provide valuable insight into the needs and experience of the patient community. Closer interaction and cooperation between patients associations and health professionals hold the key to better communication in all contexts particularly in the light of the current challenges being presented by covid-19. Delayed treatment is a crucial issue that needs to be explained, particularly where treatment is urgent, for example, the creation of a shunt or a kidney transplantation. Such delays will be associated with adverse outcomes. None of the men and women affected will be counted as victims of SARS-Cov-2, but a good proportion of them should be.
Yvanie Caillé, founder, Renaloo, a non profit kidney patients organization.
Christian Baudelot, Professor Emeritus, sociologist, Ecole Normale Supérieure, Centre Maurice Halbwachs, Paris
Alexandre Hertig, MD, PhD, transplant nephrologist, Sorbonne Université, APHP, Department of Kidney Transplantation, Hôpital de la Pitié Salpêtrière, Paris, France.
Competing interests: YC is a kidney patient/transplant recipient. She is the founder of Renaloo, a non profit kidney patients organization. AH is an elected member of the scientific committee of REIN (Réseau Epidémologie et Information en Néphrologie). REIN is a registry held by the French Biomedicine Agency (a national institution covering the four areas of transplantation, procreation, embryology and genetics), under the supervision of the French Ministry of Health. CB is a kidney donor and vice president of Renaloo, a non profit kidney patients organization.
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- Renaloo. Le 22 juin 2020 une date symbolique au creux d’une crise aux consequences lourdes pour les patients en attente de greffe renale. Available at http://www.renaloo.com/actualites2/les-dernieres-actualites-liste/3179-22-juin-2020-une-date-symbolique-au-creux-d-une-crise-aux-consequences-lourdes-pour-les-patients-en-attente-de-greffe-renale