Patient Experience: Living with Cystinuria During the COVID-19 Pandemic

Main Article Content

Ramandeep Chalokia
Francesca Kum
Niamh Foran
Kay Thomas
Matthew Bultitude

Abstract

Background and Objectives
Cystinuria is a rare genetic cause of recurrent urolithiasis and requires multimodal treatment, and stringent follow up. We wanted to evaluate the fears and concerns of patients with cystinuria during the COVID-19 pandemic.


Materials and Methods
An online survey using Google Forms was emailed to 165 patients with cystinuria who are maintained on a prospective database and had previously consented for email correspondence.


Results
Fifty-five responses were received following a single invitation, 23 were men and 32 women with a median age of 43 (range: 18-72) years. Thirty-nine (70.9%) out of 55 were isolating during the COVID-19 pandemic although only 7(12.7%) were given specific advice to shield officially. Six (10.9%) reported having COVID or COVID like symptoms, but none reported having a positive test. Only 9 (16.4%) had been able to work as usual. In comparison, 20 (36.4%) were able to work from home. Ten out of 19 patients (52.6%) on chelating medication described difficulty in access to their medicine, either due to a shortage at the pharmacy or prescription access. Reassuringly 34 (61.8%) patients described no issues with access to any of their cystinuria medications.
Twenty-two patients (40%) reported experiencing pain or passing a stone during the COVID-19 pandemic, while 30 (54.5%) reported no problems. Of patients who felt it applicable, 16/31 (51.6%) were worried about attending the Emergency Department during this time. Of patients who had scheduled hospital appointments during this time, 26/44 (59.1%) had experienced cancellations. The majority of the respondents (37 (67.3%)) did not state any difference in the ability to stay hydrated during the lockdown.
Twenty-eight (50.9%) were more anxious about their overall health during the pandemic, and 20 (36.4%) had expressed more concern about their kidney stones.


Conclusion
This personal fully patient-reported snapshot of the impact of the COVID-19 pandemic on a population of cystine stone formers in the United Kingdom has highlighted additional challenges for patients with a rare disease. The lockdown measures enforced have had a varying effect on patients’ ability to work as normal, access medications, health anxieties, in addition to cancellations of the planned hospital appointments and Emergency Department attendance, which will impact on their future health and pose evolving challenges in delivery of their future care.

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Article Details

How to Cite
Chalokia, R., Kum, F., Foran, N., Thomas, K., & Bultitude, M. (2020). Patient Experience: Living with Cystinuria During the COVID-19 Pandemic. Journal of Endoluminal Endourology, 3(3), e7-e12. https://doi.org/10.22374/jeleu.v3i3.95
Section
Original Article

References

1. Kum F, Wong K, Game D et al. Hypertension and renal impairment in patients with cystinuria: findings from a specialist cystinuria centre. Urolithiasis 2019;47(4):357–63.
2. Biyani C and Cartledge J. Cystinuria—diagnosis and management. EAU-EBU Update Series 2006;4(5):175–83.
3. Barbey F, Joly D, Rieu P et al. Medical treatment of cystinuria: critical reappraisal of long-term results. J Urol 2000;163(5):1419–23.
4. Wu Y, Chen C, Chan Y The outbreak of COVID-19. J Chinese Med Assoc 2020;83(3):217–220.
5. World Health Organization. WHO Director-General’s opening remarks at the media briefing on COVID-19 - 11 March 2020 Available at: https://www.who.int/dg/speeches/detail/ who-director-general-s-opening-remarks-at-the-media-briefing
6. Government of the United Kingdom. Prime Minister’s statement on coronavirus (COVID-19): 23 March 2020. Available at: https://www.gov.uk/government/speeches/ pm-address-to-the-nation-on-coronavirus-23-march-2020
7. National Health Service. Hospital Outpatient Activity. Available at: https://digital.nhs.uk/data-and-information/publications/statistical/hospital-outpatient-activity
8. The Health Foundation. How is COVID-19 changing the use of emergency care? Available at: https://www.health. org.uk/news-and-comment/charts-and-infographics/how-is-covid-19-changing-the-use-of-emergency-care
9. Parr J, Desai D, Winkle D Natural history and quality of life in patients with cystine urolithiasis: a single centre study. BJU Internat 2015;116:31–35.
10. Thomas K, Wong K, Withington JN et al. Cystinuria-a urologist’s perspective. Nat Rev Urol 2014;11(5):270–77. 11. Government of the United Kingdom. COVID-19: government announces moving out of contain phase and into delay. Available at: https://www.gov.uk/government/ news/covid-19-government-announces-moving-out-of-contain-phase-and-into-delay
12. Department of Health and Social Care. [Internet]. Available at: https://www.england.nhs.uk/coronavirus/wpcontent/uploads/sites/52/2020/06/C0624-shielding-letter-to-nhs.pdf
13. Wang C, Pan R, Wan X et al. Immediate psychological responses and associated factors during the initial stage of the 2019 coronavirus disease (COVID-19) epidemic among the general population in China. Internat J Environ Res Public Health 2020;17(5):1729.
14. Kar SK, Yasir Arafat SM, Kabir R et al. Coping with mental health challenges during COVID-19. Coronavirus Disease 2019 (COVID-19) 2020;199–213.
15. Øbro LF, Pedersen KV, Lildal SK et al. The challenges of cystinuria in the twenty-first century: a mini review. J Rare Dis Res Treat 2016;1(3):41–45.
16. National Health Service. COVID-19 Daily Deaths. Available at:https://www.england.nhs.uk/statistics/statistical-work-areas/covid-19-daily-deaths/