The COVID-19 Pandemic and Ophthalmic Care: A Qualitative Study of Patients with Neovascular Age-Related Macular Degeneration (nAMD)
Abstract
:1. Introduction
2. Materials and Methods
2.1. Participants
2.2. Data Collection
2.3. Data Analysis
3. Results
3.1. Theme i. Access to Eye Clinic Care
3.2. Theme ii. COVID-19-Mitigating Factors and Care Delivery
3.3. Social and Personal Circumstances
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
- Cucinotta, D.; Vanelli, M. WHO Declares COVID-19 a Pandemic. Acta Biomed. 2020, 91, 157–160. [Google Scholar] [PubMed]
- Wu, F.; Zhao, S.; Yu, B.; Chen, Y.M.; Wang, W.; Song, Z.G.; Hu, Y.; Tao, Z.W.; Tian, J.H.; Pei, Y.-Y.; et al. A new coronavirus associated with human respiratory disease in China. Nature 2020, 579, 265–269. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Mueller, A.L.; McNamara, M.S.; Sinclair, D.A. Why does COVID-19 disproportionately affect older people? Aging 2020, 12, 9959–9981. [Google Scholar] [CrossRef]
- Chang, J.E.; Lai, A.Y.; Gupta, A.; Nguyen, A.M.; Berry, C.A.; Shelley, D.R. Rapid Transition to Telehealth and the Digital Divide: Implications for Primary Care Access and Equity in a Post-COVID Era. Milbank Q. 2021, 99, 340–368. [Google Scholar] [CrossRef]
- dell’Omo, R.; Filippelli, M.; Semeraro, F.; Avitabile, T.; Giansanti, F.; Parmeggiani, F.; Romano, M.R.; Strianese, D.; Romano, V.; Virgili, G.; et al. Effects of the first month of lockdown for COVID-19 in Italy: A preliminary analysis on the eyecare system from six centers. Eur. J. Ophthalmol. 2020, 24, 1120672120953074. [Google Scholar] [CrossRef] [PubMed]
- Stone, L.G.; Devenport, A.; Stratton, I.M.; Talks, J.S. Macula service evaluation and assessing priorities for anti-VEGF treatment in the light of COVID-19. Graefes Arch. Clin. Exp. Ophthalmol. 2020, 258, 2639–2645. [Google Scholar] [CrossRef]
- Ferguson, N.M.; Laydon, D.; Nedjati-Gilani, G.; Imai, N.; Ainslie, K.; Baguelin, M.; Bhatia, S.; Boonyasiri, A.; Cucunubá, Z.; Cuomo-Dannenburg, G.; et al. Report 9—Impact of Non-Pharmaceutical Interventions (NPIs) to Reduce COVID-19 Mortality and Healthcare Demand; Technical Report; Imperial College London: London, UK, 2020. [Google Scholar]
- Li, J.Q.; Welchowski, T.; Schmid, M.; Mauschitz, M.M.; Holz, F.G.; Finger, R.P. Prevalence and incidence of age-related macular degeneration in Europe: A systematic review and meta-analysis. Br. J. Ophthalmol. 2020, 104, 1077–1084. [Google Scholar] [CrossRef]
- Wong, W.L.; Su, X.; Li, X.; Cheung, C.M.; Klein, R.; Cheng, C.Y.; Wong, T.Y. Global prevalence of age-related macular degeneration and disease burden projection for 2020 and 2040: A systematic review and meta-analysis. Lancet Glob. Health 2014, 2, e106–e116. [Google Scholar] [CrossRef] [Green Version]
- Keenan, T.D.L.; Cukras, C.A.; Chew, E.Y. Age-Related Macular Degeneration: Epidemiology and Clinical Aspects. In Age-Related Macular Degeneration; Springer: Cham, Switzerland, 2021; Volume 1256, pp. 1–31. [Google Scholar]
- Shao, J.; Choudhary, M.M.; Schachat, A.P. Neovascular Age-Related Macular Degeneration. Dev. Ophthalmol. 2016, 55, 125–136. [Google Scholar]
- Ricci, F.; Bandello, F.; Navarra, P.; Staurenghi, G.; Stumpp, M.; Zarbin, M. Neovascular Age-Related Macular Degeneration: Therapeutic Management and New-Upcoming Approaches. Int. J. Mol. Sci. 2020, 3, 8242. [Google Scholar] [CrossRef]
- Saldaña, J. Qualitative Data Analysis Strategies. In The Oxford Handbook of Qualitative Research, 2nd ed.; Leavy, P., Ed.; Oxford University Press: Oxford, UK, 2018. [Google Scholar]
- GOV.UK. Coronavirus (COVID-19): Guidance and Support. Available online: https://www.gov.uk/coronavirus (accessed on 21 April 2022).
- Tong, A.; Sainsbury, P.; Craig, J. Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Int. J. Qual. Health Care 2007, 19, 349–357. [Google Scholar] [CrossRef] [Green Version]
- Ward, E.; Wickens, R.A.; O’Connell, A.; Culliford, L.A.; Rogers, C.A.; Gidman, E.A.; Peto, T.; Knox, P.C.; Burton, B.J.L.; Lotery, A.J.; et al. Monitoring for neovascular age-related macular degeneration (AMD) reactivation at home: The MONARCH study. Eye 2021, 35, 592–600. [Google Scholar] [CrossRef] [PubMed]
- Sekhon, M.; Cartwright, M.; Francis, J.J. Acceptability of health care interventions: A theoretical framework and proposed research agenda. Br. J. Health Psychol. 2018, 23, 519–531. [Google Scholar] [CrossRef] [PubMed]
- Assarroudi, A.; Heshmati Nabavi, F.; Armat, M.R.; Ebadi, A.; Vaismoradi, M. Directed qualitative content analysis: The description and elaboration of its underpinning methods and data analysis process. J. Res. Nurs. 2018, 23, 42–55. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Vindrola-Padros, C.; Chisnall, G.; Cooper, S.; Dowrick, A.; Djellouli, N.; Symmons, S.M.; Martin, S.; Singleton, G.; Vanderslott, S.; Vera, N.; et al. Carrying out rapid qualitative research during a pandemic: Emerging lessons from COVID-19. Qual. Health Res. 2020, 30, 2192–2204. [Google Scholar] [CrossRef] [PubMed]
- Thetford, C.; Hodge, S.; Harding, S.; Taylor, S.; Knox, P.C. Living with age-related macular degeneration treatment: Patient experiences of being treated with ranibizumab (Lucentis)(R) intravitreal injections. Br. J. Vis. Impair. 2013, 31, 89–101. [Google Scholar] [CrossRef] [Green Version]
- Dassieu, L.; Pagé, M.G.; Lacasse, A.; Laflamme, M.; Perron, V.; Janelle-Montcalm, A.; Hudspith, M.; Moor, G.; Sutton, K.; Thompson, J.M.; et al. Chronic pain experience and health inequities during the COVID-19 pandemic in Canada: Qualitative findings from the chronic pain & COVID-19 pan-Canadian study. Int. J. Equity Health 2021, 20, 147. [Google Scholar]
- Shi, C.; Zhu, H.; Liu, J.; Zhou, J.; Tang, W. Barriers to Self-Management of Type 2 Diabetes During COVID-19 Medical Isolation: A Qualitative Study. Diabetes Metab. Syndr. Obes. 2020, 13, 3713–3725. [Google Scholar] [CrossRef] [PubMed]
- Grannell, A.; le Roux, C.W.; McGillicuddy, D. “I am terrified of something happening to me” The lived experience of people with obesity during the COVID-19 pandemic. Clin. Obes. 2020, 10, e12406. [Google Scholar] [CrossRef]
- Diegoli, H.; Magalhães, P.S.C.; Martins, S.C.O.; Moro, C.H.; França, P.H.; Safanelli, J.; Nagel, V.; Venancio, V.G.; Liberato, R.B.; Longo, A.L. Decrease in Hospital Admissions for Transient Ischemic Attack, Mild, and Moderate Stroke During the COVID-19 Era. Stroke 2020, 51, 2315–2321. [Google Scholar] [CrossRef]
- Lindeke-Myers, A.; Zhao, P.Y.C.; Meyer, B.I.; Liu, E.A.; Levine, D.A.; Bennett, O.M.; Ji, S.; Newman-Casey, P.A.; Rao, R.C.; Jain, N. Patient Perceptions of SARS-CoV-2 Exposure Risk and Association with Continuity of Ophthalmic Care. JAMA Ophthalmol. 2021, 139, 508–515. [Google Scholar] [CrossRef]
- Rozon, J.P.; Hébert, M.; Bourgault, S.; Caissie, M.; Letartre, L.; Tourville, E.; Dirani, A. Fear Associated with COVID-19 in Patients with Neovascular Age-Related Macular Degeneration. Clin. Ophthalmol. 2021, 15, 1153–1161. [Google Scholar] [CrossRef]
- Roy, C.M.; Bollman, E.B.; Carson, L.M.; Northrop, A.J.; Jackson, E.F.; Moresky, R.T. Assessing the indirect effects of COVID-19 on healthcare delivery, utilization and health outcomes: A scoping review. Eur. J. Public Health 2021, 31, 634–640. [Google Scholar] [CrossRef]
- Sim, S.S.; Yip, M.Y.; Wang, Z.; Tan, A.C.; Tan, G.S.; Cheung, C.M.; Chakravarthy, U.; Wong, T.Y.; Teo, K.Y.; Ting, D.S. Digital Technology for AMD Management in the Post-COVID-19 New Normal. Asia Pac. J. Ophthalmol. 2021, 10, 39–48. [Google Scholar] [CrossRef] [PubMed]
- Chen, D.A.; Tran, A.Q.; Dinkin, M.J.; Lelli, G.J. Ophthalmic Virtual Visit Utilization and Patient Satisfaction During the COVID-19 Pandemic. Telemed. E-Health 2022, 28, 798–805. [Google Scholar] [CrossRef]
- Townsend, D.; Reeves, B.C.; Taylor, J.; Chakravarthy, U.; O’Reilly, D.; Hogg, R.E.; Mills, N. Health professionals’ and service users’ perspectives of shared care for monitoring wet age-related macular degeneration: A qualitative study alongside the ECHoES trial. BMJ Open 2015, 5, e007400. [Google Scholar] [CrossRef] [Green Version]
- Saarijärvi, M.; Bratt, E. When face-to-face interviews are not possible: Tips and tricks for video, telephone, online chat, and email interviews in qualitative research. Eur. J. Cardiovasc. Nurs. 2021, 20, 392–396. [Google Scholar] [CrossRef]
- Reñosa, M.D.C.; Mwamba, C.; Meghani, A.; West, N.S.; Hariyani, S.; Ddaaki, W.; Sharma, A.; Beres, L.K.; McMahon, S. Selfie consents, remote rapport, and Zoom debriefings:collecting qualitative data amid a pandemic in four resource-constrained settings. BMJ Glob. Health 2021, 6, e004193. [Google Scholar] [CrossRef]
- Taylor, D.J.; Jones, L.; Binns, A.M.; Crabb, D.P. ‘You’ve got dry macular degeneration, end of story’: A qualitative study into the experience of living with non-neovascular age-related macular degeneration. Eye 2020, 34, 461–473. [Google Scholar] [CrossRef] [Green Version]
- Boyle, J.; Vukicevic, M.; Koklanis, K.; Itsiopoulos, C.; Rees, G. Experiences of patients undergoing repeated intravitreal anti-vascular endothelial growth factor injections for neovascular age-related macular degeneration. Psychol. Health Med. 2018, 23, 127–140. [Google Scholar] [CrossRef] [PubMed]
Baseline Characteristics | Sample (n = 35) | ||
---|---|---|---|
Sex | Male | n | % |
Female | 11 | 31.4 | |
Age | Mean (SD) years | 24 | 68.6 |
Visual acuity * | Mean (SD) LogMAR | 77.4 (8.4) | - |
Theme: Impact on Access to Care |
---|
‘… the only thing is, it has been a long, long time since they have called me in. I understand the reason, but I am concerned because the second eye is getting worse, and I am hoping that they will call me in soon.’ (Male, Age range: 71–75 years, #30) |
‘… I know I’m supposed to be there every four to six weeks, but it’s a lot longer than that this time. But, I understand, they can’t help it.’ (Male, Age range: 71–75 years, #14) |
‘… yes, I notice things are getting worse. Originally, it was just my left eye giving the trouble, and it has got worse. I am finding it harder to focus. The last time I was there, the right eye was starting to go, so I had an injection in it too. I am concerned that it is going to get worse the longer this goes on.’ (Female, Age range: 61–65 years, #19) |
‘… so COVID already had come in, so there was the distancing, things like that there. But, the reason this time for the delay, was that they had to put in more measures, and I accept that. But, they could have let me know.’ (Male, Age range: 71–75 years, #20) |
‘… it was the {date} I got my first injection in the left eye and then they brought me back on the {date} Then, it was the start of August, so I got three in a row. I haven’t heard anything since and to be honest, I ended up ringing them because I was so anxious as both eyes are now wet. I rang, and they did ring me back and sort out an appointment pretty quick.’ (Female, Age range: 61–70 years, #32) |
‘… I’m supposed to get injections every six to eight weeks. But with COVID and what have you its overdue now and I don’t know when I‘m going to get the next one. It does feel like things improve or are at least stabilized with the injections.’ (Female, Age range: 61–70, #24) |
‘… in the meantime, I have had a visit to the opticians, and he was happy my eyesight had been much the same as it had been the previous visit to him a year ago. That was {date} I went there, so it’s a bit reassuring to know that.’ (Female, Age range: 71–75 years, #09) |
Theme: Effect of COVID-19-Mitigating Factors on Care Delivery |
‘… I don’t know what’s going to happen now in the next period of time, because it’s very difficult in there to separate people, they are all crammed into a small unit.’ (Female, Age range: 66–70 years, #33) |
‘… well, I have been fine with my appointments, everything has went quite straightforward. The last one after COVID had started, it was all social spacing, and that was excellent at the hospital.’ (Female, Age range: 61–65 years, #07) |
‘… I would have preferred to stay at home than be out. I suffer from COPD and going to a place where there would be a lot of people, unless it is really necessary, I would have preferred not to have gone.’ (Male, Age range: 66–70 years, #28) |
‘… It is no good saying, oh it is not going to affect me, I am ok. I was worried because I am {age}, which puts me in the top band. Then, to be told in the last month I also have cancer in my lung, makes me very, what would you say, nervous about going out.’ (Male, Age range: 71–75 years, #14) |
‘… everybody at the clinic was, honestly they were so good and so reassuring. No matter how many times you go to get the injection, you just are really, really nervous. The waiting time, we were usually there for two hours but then when COVID kicked in, it was actually a lot quicker because they can’t have as many in the clinic.’ (Female, Age range: 71–75 years, #11) |
‘… they got me an appointment within a week and confirmed what I thought, that it had turned wet. Obviously, then I got the injection. With the whole COVID thing, my left eye, that happened in the middle of it all, but the clinic were very good.’ (Female, Age range: 66–70 years, #18) |
‘… yeah, I have been lucky enough because I had one at the end of April which was cancelled, so that was it, but in fact I got an appointment again in May to come. I found it was fine, it was very different, very few people there and before you get through the door, you are tested. Nobody is allowed to come with you, you have to go on your own. You have your temperature taken and if that is ok then you go through the whole routine, your hands sanitised and everybody there is covered in masks and visors, and aprons. So, it is very safe.’ (Female, Age range: 71–75 years, #04) |
‘… I have had two since then, although the last time I did get my eyes scanned, so maybe that was because things are so different now, there are less staff around certainly.’ (Male, Age range: 71–75 years, #22) |
Theme: Influence of Social and Personal Circumstances |
---|
‘… so for six weeks, when they shut down, it all happened very quickly here, in my family they live down in [town] and it was all a bit scary at the beginning. They insisted on me going down there, I‘ve stayed with my son since then.’ (Male, Age range: 71–75 years, #14) |
‘… I suppose I do feel more depressed now with this happening. Every so often its just feels difficult, you know, you just really really need to go and get out of the house.’ (Female, Age range: 66–70 years, #18) |
‘… I have been getting worried, {partner name} looks like his job is going to end, that means we won’t have as much support any more.’ (Female, Age range: 66–70 years, #03) |
‘… we are all paying attention to the precautions and the rules and I do take them. It can be a bit scary at times but I understand why it’s needed right now.’ (Male, Age range: 66–70 years, #12) |
‘… I would prefer to stay at home than be out. I suffer from COPD and going to a place where there would be a lot of people, unless it is really necessary, I would have preferred not to have gone.’ (Male, Age range: 66–70 years, #28) |
Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations. |
© 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
O’Connor, S.R.; Treanor, C.; Ward, E.; Wickens, R.A.; O’Connell, A.; Culliford, L.A.; Rogers, C.A.; Gidman, E.A.; Peto, T.; Knox, P.C.; et al. The COVID-19 Pandemic and Ophthalmic Care: A Qualitative Study of Patients with Neovascular Age-Related Macular Degeneration (nAMD). Int. J. Environ. Res. Public Health 2022, 19, 9488. https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19159488
O’Connor SR, Treanor C, Ward E, Wickens RA, O’Connell A, Culliford LA, Rogers CA, Gidman EA, Peto T, Knox PC, et al. The COVID-19 Pandemic and Ophthalmic Care: A Qualitative Study of Patients with Neovascular Age-Related Macular Degeneration (nAMD). International Journal of Environmental Research and Public Health. 2022; 19(15):9488. https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19159488
Chicago/Turabian StyleO’Connor, Seán R., Charlene Treanor, Elizabeth Ward, Robin A. Wickens, Abby O’Connell, Lucy A. Culliford, Chris A. Rogers, Eleanor A. Gidman, Tunde Peto, Paul C. Knox, and et al. 2022. "The COVID-19 Pandemic and Ophthalmic Care: A Qualitative Study of Patients with Neovascular Age-Related Macular Degeneration (nAMD)" International Journal of Environmental Research and Public Health 19, no. 15: 9488. https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19159488