1. Magnifying glass
March 2020 will be in our memory forever, as the COVID-19 pandemic literally closed down the world. During the early COVID-19 days Colombo et al. [1] mark that the pandemic led to rapid, crisis oriented shifts in health care delivery, potentially threatening center care, transplant programs and clinical trials. Now, one and a half years later, we can look back and observe the way CF teams provided care, taking into account specific situations, communities, countries and societies. It seems that over time the urgent shift in care facilitated beneficial changes and being locked up triggered our creativity and inventiveness. The pandemic helped us to look at our care through a magnifying glass, displaying strengths and weaknesses, but also opportunities, including telehealth. If not for the pandemic, these opportunities would probably have been slumbering on for quite a while. COVID-19 and the lockdowns impacted our regular care and forced us to let go of well-established habits, to develop different ways of providing care and exploring new horizons.
2. Mental health screening
The mental health (MH) guidelines [2], based on the TIDES study [3], have created, without a doubt, a solid basis for MH care to become an integral part of care in most CF centers. In the USA, the CFF provided unprecedented specific MH coordinator grants (MHC). Many CF centers worldwide explored ways to introduce MH screening. Today, globally there is still unevenness in MH care, but most CF centers have at least opened up to the idea of keeping up some standards in MH care.
The paper by Smith et.al. studied the impact of the pandemic on anxiety and depression in people with CF (pwCF), including how COVID-19 affected the frequency of MH screening and the types of psychological services provided. They sent an online questionnaire to 289 US CF programs and responses were obtained from 131. Most centers continued screening, although the frequency of screening was (temporarily) reduced. Clinically elevated scores of anxiety and depression were found, which was to be expected considering the pandemic, and it is important to state that pwCF did not react much differently from the general population [4]. It is not clear whether these elevated scores are related to specific factors, such as fear of infection, isolation, quarantine or uncertainty.
Continued screening and long term research will help us understand the MH data registered at the beginning of the pandemic. We hope to record a decrease in anxiety and depression scores, following the initial increase, pointing to lasting resilience in our patients. In addition, through continued MH screening we can aim at identifying patients with MH problems or those who have developed a post-traumatic stress disorder due to the pandemic.
3. Mental health care
In CF we may consider ourselves as exemplar as MH care is concerned: as said before screening is integrated in many programs and MH care is part of all standard of care documents. This groundwork probably helped us at the start of the pandemic.
The impact of the pandemic has given the importance of MH care delivery a boost. The call for psychological therapy has risen, stigma concerning psychological help and therapy has decreased and reimbursement and insurance programs to cover for MH care are on the rise. To say it simply: MH care and psychology have (temporarily?) gained a center stage position.
I hope this will last, but I am skeptical as MH care costs are often considered high and return is difficult to assess, especially in an evidence based manner.
The reduction in stigma is reflected in Smith’s results as pwCF and their parents are pleased that teams respond to their psychological needs since the start of the pandemic. The results show that pwCF are more willing to seek treatment for depression and anxiety. There is an increase in the discussion of MH challenges among family members, and increased awareness and education among CF team members about the impact of psychological distress.
Smith et al also describe how MHC took on new roles during the pandemic. These new roles included ‘providing mental/behavioral health interventions’, ‘coordinate referrals’, ‘monitor progress and facilitate team discussion on MH’ and ‘providing individual (tele)behavioral health therapy’ as the most frequent roles mentioned. These changes surprised me a little as I would have expected MHC would have had these roles before the pandemic as well? Content wise, of course, COVID-19 demanded a prominent role during all interventions and patient contacts.
4. Telehealth
Smith et al. write in their introduction that the pandemic not only caused an increasing demand for psychological services, but also that the mode of delivery of care had to change quickly and efficiently. Worldwide the pandemic has caused this acceleration of new techniques for health care delivery: telehealth, video conferencing, online screening, long distance electronic monitoring and so forth. This has presented an opportunity for novel approaches to improve delivery of CF care with remote monitoring and real-time delivery of care in patients’ home environments [5], [6], [7]. Smith et al. report on barriers perceived by CF teams, which were either ‘telehealth related’: access for providers, electronic screening methods; or ‘provider related’: lack of training or licensing, reimbursement or insurance issues. MH screening through electronic medical dossiers (EMD) is not common practice in many centers, but would be the best way forward to ensure continuity of screening under difficult circumstances.
The barriers described by Smith et al. reflect the situation in CF centers in the USA and we have to be cautious in generalizing these results to other countries. For example in Europe additional challenges are cultural differences, language challenges, and a multitude of national insurance systems [8]. Nevertheless the data generate an important signal. Psychological screening and interventions via telehealth are feasible, acceptable and effective. The challenges, however, are plenty, including implementing electronic screening, efficient scheduling, space and privacy [7]. Above all there is the challenge to reach socially fragile pwCF, who have no easy access to required technology tools.
For sure, future care will include telehealth, and the pandemic has speeded up this development. Psychologists and/or MHC need to develop virtual screening plans, preferably using EMD and virtual treatment plans. For these we will need clinical resources, training, access to telehealth, and financial support.
Most important is the challenge to expand our provision of MH care, as we may expect many pwCF to suffer a prolonged psychological impact from COVID-19. CF teams still need to put the information that pwCF and parents receive from the media into context and support them to balance the perceived risk with true risk [9]. Moreover, there are unique and exciting psychological challenges ahead with the broad implementation of CFTR modulators. After all, it is not only COVID-19 that shook MH care for our patients over the past year. We are looking at a promising new horizon in CF and we need to be prepared.
Footnotes
This paper is part of a Supplement supported by the Cystic Fibrosis Foundation.
References
- 1.Colombo C, Burgel PR, Gartner S, van Koningsbruggen-Rietschel S, Naehrlich L, Sermet-Gaudelus I, Southern KW. Impact of COVID-19 on people with cystic fibrosis. Lancet Respir Med. 2020;8(5):e35–e36. doi: 10.1016/S2213-2600(20)30177-6. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Quittner AL, Abbott J, Georgiopoulos AM, Goldbeck L, Smith B, Hempstead SE, et al. International committee on mental health in cystic fibrosis: cystic fibrosis foundation and european cystic fibrosis society consensus statements for screening and treating depression and anxiety. Thorax. 2016;71(1):26–34. doi: 10.1136/thoraxjnl-2015-207488. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Quittner AL, Goldbeck L, Abbott J, Duff A, Lambrecht P, Solé A, et al. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax. 2014;69(12):1090–1097. doi: 10.1136/thoraxjnl-2014-205983. [DOI] [PubMed] [Google Scholar]
- 4.Ciprandi R, Bonati M, Campi R, Pescini R, Castellani C. Psychological distress in adults with and without cystic fibrosis during the COVID-19 lockdown. J Cyst Fibros. 2021;20(2):198–204. doi: 10.1016/j.jcf.2020.12.016. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.Graziano S, Boldrini F, Righelli D, et al. Psychological interventions during COVID pandemic: telehealth for individuals with cystic fibrosis and caregivers. Pediatr Pulmonol. 2021;56:1976–1984. doi: 10.1002/ppul.25413. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Hasan S, Cecilia Lansang M, Salman Khan M, Dasenbrook E. Managing Cystic Fibrosis related diabetes via telehealth during COVID-19 pandemic. J Clin Transl Endocrinol. 2021;23 doi: 10.1016/j.jcte.2021.100253. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Womack C, Farsin R, Farsad M, Chaudary N. Emerging alternatives to conventional clinic visits in the era of COVID-19: adoption of telehealth at VCU adult cystic fibrosis center. Int J Gen Med. 2020;13:1175–1186. doi: 10.2147/IJGM.S274193. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Abbott J, Havermans T, Jarvholm S, Landau E, Prins Y, Smrekar U, et al. Mental Health screening in cystic fibrosis centres across Europe. J Cyst Fibros. 2019;18:299–303. doi: 10.1016/j.jcf.2018.09.003. [DOI] [PubMed] [Google Scholar]
- 9.Havermans T, Houben J, Vermeulen F, Boon M, Proesmans M, Lorent N, de Soir E, Vos R, Dupont L. The impact of the COVID-19 pandemic on the emotional well-being and home treatment of Belgian patients with cystic fibrosis, including transplanted patients and paediatric patients. J Cyst Fibros. 2020;19(6):880–887. doi: 10.1016/j.jcf.2020.07.022. [DOI] [PMC free article] [PubMed] [Google Scholar]
