1. Giving a voice to adults with COVID-19: An analysis of open-ended comments from COVID-19 smell long-haulers and non-long-haulers
- Author
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Croijmans, Ilja, Cooper, Keiland, Koyama, Sachiko, Mucignat, Carla, Farruggia, Michael, Heinbockel, Thomas, Shields, Vonnie, and Menger, Nick
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Medicine and Health Sciences ,Social and Behavioral Sciences - Abstract
Chemosensory dysfunction is one of the distinguishing symptoms of COVID-19 (1, 2). While many infected patients recover within weeks, a large percentage develops long-term olfactory dysfunction even after recovery from the acute phase (3, 4), now known as smell long-haulers. Qualitative smell changes, such as parosmia (i.e., distorted smell perception), and phantosmia (i.e., smelling things that are not present), are often reported in smell long-haulers, and in people who report recovered or improved qualitative smell changes (i.e., anosmia and hyposmia) (5, 6). While these smell distortions are not uncommon, most people are unaware of the technical terminology for such disruptions, hence it is difficult to capture a person’s specific olfactory experiences in general close-ended survey questions as smell disturbances are common (6, 7, 8). Moreover, how this distorted smell perception relates to well-being, or person-specific practices, for example, specific food avoidance or intake behavior following changes in the perception of those foods, is unclear. Extensive literature documents the detrimental effect of chemosensory dysfunction on emotional well-being (9, 10), but this is not fully understood with respect to olfaction in long-haulers. Patients have reported altered mental health as well as frustrations with COVID-19-related olfactory dysfunction (11). Furthermore, chemosensory dysfunctions, if severe enough, can alter dietary patterns leading to weight gain or weight loss (12, p. 2). Identification of specific food-related experiences related to chemosensory dysfunctions, such as parosmia and phantosmia in smell long-haulers might give us clues that help predict potential alterations in dietary patterns in that population. In this project, we plan to analyze open-ended questions in GCCR surveys to understand: I. the frequency of parosmia and phantosmia as reported in open-ended comments, II. the emotional well-being of people suffering from these symptoms, and III. specific food-related experiences related to these symptoms. Open-ended questions allow patients to voice concerns not covered by other questions, and are a closer reflection of how patients would report these symptoms to their general practitioner or health-care worker (13). Identifying these comments and their content will contribute towards understanding how long-hauling might affect emotional well-being, frequency and severity of the symptoms, and related food experiences, in a more behaviorally valid way compared to close-ended survey questions. 1) Parma V., Ohla K., Veldhuizen M.G., Niv M.Y., Kelly C.E., Bakke A.J., et al. More than just smell-COVID-19 is associated with severe impairment of smell, taste, and chemesthesis. Chemical Senses. 2020 Oct 9;45(7):609-622. 2) Gerkin R., Ohla K, Veldhuizen MG. et al. Recent smell loss is the best predictor of COVID-19 among individuals with recent respiratory symptoms. Chemical Senses. 2021 Jan 1;46:1-12. bjaa081 3) Boscolo-Rizzo P., Menegaldo A., Fabbris C.,Spinato G., et al. High prevalence of long-term psychophysical olfactory dysfunction in patients with COVID-19. medRXiv 2021.doi: https://doi.org/10.1101/2021.01.07.21249406 4) Petrocelli M et al. Six-month smell and taste recovery rates in coronavirus disease 2019 patients: a prospective psychophysical study. J Laryngol Otol 2021; 1–6. https://doi.org/10.1017/ S002221512100116X 5) Ohla et al., Increasing incidence of parosmia and phantosmia in patients recovering from COVID-19 smell loss (pre-print) https://www.medrxiv.org/content/10.1101/2021.08.28.21262763v1 6) Koyama, S., Ueha, R., & Kondo, K. (2021). Loss of Smell and Taste in Patients With Suspected COVID-19: Analyses of Patients’ Reports on Social Media. Journal of Medical Internet Research, 23(4), e26459. 7) Deems, D. A., Doty, R. L., Settle, R. G., Moore-Gillon, V., Shaman, P., Mester, A. F., ... & Snow, J. B. (1991). Smell and taste disorders, a study of 750 patients from the University of Pennsylvania Smell and Taste Center. Archives of otolaryngology–head & neck surgery, 117(5), 519-528. 8) Bromley, S. M. (2000). Smell and taste disorders: a primary care approach. American family physician, 61(2), 427-436. 9) Boesveldt, S., & Parma, V. (2021). The importance of the olfactory system in human well-being, through nutrition and social behavior. Cell and Tissue Research, 1-9. 10) Croy, I., Nordin, S., & Hummel, T. (2014). Olfactory disorders and quality of life—an updated review. Chemical senses, 39(3), 185-194. 11) Parker, J. K., Kelly C. E., Smith B., Hopkins C., Gane S. B. (2020). An analysis of patients’ perspectives on qualitative olfactory dysfunction using social media. medRxiv 2020.12.30.20249029; doi:https://doi.org/10.1101/2020.12.30.20249029 12) Duffy, V.B. (2020). Causes of smell, taste and oral somatosensory disorders affecting eating and drinking. In: H.L. Meiselman (Ed.). Handbook of eating and drinking. Rockport: Springer, Cham. 13) Bird, J. B., Olvet, D. M., Willey, J. M., & Brenner, J. (2019). Patients don’t come with multiple choice options: essay-based assessment in UME. Medical education online, 24(1), 1649959.
- Published
- 2022
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