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Professor Sinclair and her team1 in Birmingham highlight an urgent issue affecting patients with IIH during the COVID19 pandemic. Their paper elegantly shows that weight gain worsens the severity of papilloedema and puts patients at risk of blindness. They also highlight the risk of worsening papilloedema not picked up with reduced access to hospital appointments.
Here, we report the audit results from our service and share practical actions that have been effective for our service, with wider applicability.
From May – Dec 2020, 58/102 (57%) IIH patients seen for follow up had gained weight compared to weight measured prior to pandemic by median 5.35 (range 0.6,27.3; SD 4.42)kg; with overall weight change of median 1.65 (range -24, 27.3; SD 6.81)kg for the group. 3/58 (5%) patients who gained weight, developed worsening papilloedema.
We agree with the importance of optic disc examination as highlighted by Sinclair and colleagues1, and the need for PPE precautions in the COVID19 pandemic setting. An option we found helpful is fundus photography of the optic disc in the community which the patient then emails their clinician. Fundus photography is now widely available at high-street optometrists. Benefits of doing this include: circumventing patients’ fears of attending hospitals during the pandemic; a patient-held record for future comparison; and the option for clinicians to obtain a colleague’s second opinion on the optic disc photograph.
In response to the pandemic, we set up technician-led IIH follow-up clinics for vision assessment, optic disc photography and optical coherence tomography (OCT). Patients were sent text message links to symptom questionnaires. Patients were then offered review in a group consultation (GC) setting by video. Those who opted out were offered one-to-one telephone review. The patient feedback for the GC have been overwhelming positive; details of this set up is further described elsewhere2.
A key part of our work with IIH patients is creating community and facilitating peer support, to tackle the sense of isolation from having the diagnosis, exacerbated by the COVID19 pandemic 3. In 2017 we started the IIH weight-loss and wellness (IIH-WoW) workshops on sustainable lifestyle measures for weight loss and wellbeing. Since May 2020 in response to the pandemic, these IIH-WoW workshops have been delivered via video calls. Topics covered included healthy habits and routines, nutrition, physical activity, emotional eating, stress management, goal setting and maintaining motivation. Feedback showed a median rating of 9/10 for ‘how much did you enjoy the workshop” and 8/10 for “how much benefit did you gain from the workshop”. The following patient responses to the question ‘What did you gain from the IIH-WoW workshop?’, illustrate the practical benefits gained from the sense of community, hope, and empowerment:
- “I think one of the challenges I've been experiencing has been - not just sharing my goals but being able to share it with someone who understands my motivation as we'd all ideally like to me free of IIH. That's not really something people in my friend circle can relate to and it's just really nice having that sense of community.”
- “Hearing others struggles. Being able to compare, share compassion, give and receive advice.”
- “Focus not just goals but actioning them and knowing others are doing the same and supporting each other.”
- “I gained two very significant things from this session. The first and most important is seeing and knowing that I'm not alone. I was diagnosed with IIH seven years ago and this event was the first opportunity I've had to meet others with the same condition. In the course of an hour, I went from being terribly isolated, to being part of a sisterhood of diverse, strong, and courageous women... I cannot overstate what a transformative experience that was. The second thing I gained is the sense of possibility. I've had numerous doctors tell me all the things I can't do... Dr Wong has shifted the focus back to what we can do, with small steps, targeted, realistic goals and with the wellbeing of our whole person in mind. In short, I've gained a new initiative.”
Patients valued the sense of peer support from these IIH-WoW and GC sessions, feeling less isolated particularly as IIH is a rare condition and they may feel stigmatised. We facilitate these group sessions using principles from Health Coaching 4 and Motivational Interviewing5, where patients are empowered to act and come up with their solutions.
In summary, we echo the concerns raised by Professor Sinclair and colleagues and highlight additional measures that could further support IIH patients during this pandemic.
This work was done at Guys & St Thomas’ (GSTT) NHSFT with the GSTT IIH Team. The IIH-WoW work was shortlisted in 2019 for the King’s Health Partners Education Academy Awards (Mind and Body category) and is only possible with the support from the GSTT IIH Team; the Eye Dept; Deborah Gibson; Dr Denise Ratcliffe; dietetics and physiotherapy teams. The Group Consultation work was awarded top abstract for the British Society of Lifestyle Medicine 2020 conference and shortlisted for the HSJ Acute Sector Innovation Award (2021); supported by Group Consultations Ltd.
Conflicts of interest
None to declare
1. Thaller M, Tsermoulas G, Sun R, Mollan SP, Sinclair AJ. Negative impact of COVID-19 lockdown on papilloedema and idiopathic intracranial hypertension. J Neurol Neurosurg Psychiatry. 2020 Dec 24:jnnp-2020-325519. doi: 10.1136/jnnp-2020-325519. Epub ahead of print. PMID: 33361411.
2. Wong SH, Barrow N, Hall K, Gandesha P, Manson M. The effective management of Idiopathic Intracranial Hypertension delivered by group consultations: results and reflections from a Phase One Service Delivery. Neuro-ophthalmology (under review)
3. Miller ED. Loneliness in the Era of COVID-19. Front Psychol. 2020 Sep 18;11:2219. doi: 10.3389/fpsyg.2020.02219. PMID: 33071848; PMCID: PMC7530332.
4. Conn S, Curtain S. Health coaching as a lifestyle medicine process in primary care. Aust J Gen Pract. 2019 Oct;48(10):677-680. doi: 10.31128/AJGP-07-19-4984. PMID: 31569315.
5. Rollnick, S., & Miller, W. What is Motivational Interviewing? Behavioural and Cognitive Psychotherapy 1995, 23(4), 325-334. doi:10.1017/S135246580001643X