The Effective Management of Idiopathic Intracranial Hypertension Delivered by In-person and Virtual Group Consultations: Results and Reflections from a Phase One Service Delivery

ABSTRACT

The increasing incidence of idiopathic intracranial hypertension (IIH) with the obesity epidemic is leading to increased pressures on service capacity. Evidence shows that group consultations (GCs) deliver effective, person-centred healthcare, but the feasibility for IIH is unknown. We set out to develop and test a safe and effective GC service for IIH. Through an interactive approach, we co-designed a bespoke in-person and virtual GC model, where patients are reviewed in a group setting. Improvements were made following each session following patient input and team reflections. Outcomes measured included patient satisfaction, self-perceived health literacy, and successful implementation of the GCs. During the pilot, eight in-person GCs were delivered: once-monthly (Oct–Dec 2019), then twice-monthly (Jan–Feb 2020). Feedback was received from 49/53 patients. 100% felt more satisfied and heard, 100% felt more involved in decision-making, 98% had a better understanding of their condition, 96% felt more able to cope with their condition and keep themselves healthy, 94% rated this as a positive experience, and 90% reported improved access and more time with their clinician compared with existing 1:1 appointments. Since September 2020, in response to the COVID-19 pandemic, we transitioned to weekly virtual GCs, receiving overwhelmingly positive feedback (median scores: patient satisfaction 9.5/10; being listened to by clinician 10/10; involved by clinician in treatment decisions 10/10; clinician explanation of treatment 10/10; and opportunity to discuss condition or treatment 10/10). GCs are safe and effective for IIH, and preferred in our patient cohort. This allowed ongoing high-quality, person-centred care despite challenges from the COVID-19 pandemic.

Introduction

The incidence of idiopathic intracranial hypertension (IIH) has risen by >100% from 2.26 to 4.69 per 100,000 between 2002 and 2016 in the UK in association with the rising obesity rates.¹ This is associated with high healthcare costs. For example, the annual hospital cost for IIH in England rose from £9.2 million to £49.9 million between 2002 and 2014, and is predicted to rise to £462.7 million by 2030¹; there are high hospital admission rates of 38% (in 2007) in the USA with total economic costs including loss of income exceeding 444 USD million²; and there are a large number of visits to the Emergency Department with one study showing 2.7 visits per patient.³ This was reflected in our service pressures. Clinics were heavily overbooked and appointments often delayed, affecting quality of care and the patient experience. Each individual patient appointment takes time due to the need for a comprehensive ophthalmological assessment as well as consultation time for symptom management, medications changes if necessary, and lifestyle discussions to encourage weight loss. We appreciated the value of peer support and lifestyle measures, and have therefore been facilitating Idiopathic Intracranial Hypertension Weight-loss and Wellness (IIH-WoW) workshops a few times per year to support this.⁴ However, service capacity pressures were still a concern.

We explored different models for improving the IIH service and found evidence for the group consultation (GC) model as an effective, person-centred approach in healthcare.⁵ GC describes a model where several patients have their clinical review together in a group by one or more clinicians,⁵ usually in-person although virtual GCs have been increasingly delivered since the start of the COVID-19 pandemic. Benefits reported for the GC model of care include improved patient satisfaction and outcome, increased access to clinicians, and reduced clinician burnout.⁵ However, GCs have not been previously developed for IIH patients, and the feasibility is not known. We, therefore, set out to develop and pilot a safe and effective service for the management of IIH using GCs.

Method

We co-designed a bespoke GC model to support the safe medical and lifestyle management of IIH, involving the training team from Group Consultations Ltd, the Guys and St Thomas’s (GSTT) Hospital, London IIH clinical team and patients. The GC model had to allow safe medical review of patients simultaneously in a group setting (including medication changes and any clinical issues) and be conducive to discussions about symptom management and, where appropriate, discussions about lifestyle and behaviour change. A bespoke GC model was developed through an iterative approach, with improvements made incorporating patient feedback and team reflections after each GC session. Feedback was collected at the end of the GC session via a questionnaire (see Supplement), and any patient who seemed dissatisfied, either by written feedback or from observation by the clinical team, was contacted by the team for more detailed feedback. This work was done as part of Service Quality Improvement, for our patients under the National Health Service. Outcome measures included patient satisfaction, self-perceived health literacy, and successful implementation of the GCs. Patients with IIH under our care who were due for their follow-up clinic appointment were offered GC appointments.

Results

During the pilot, eight in-person GCs were delivered, initially once monthly (Oct–Dec 2019), then twice-monthly (Jan–Feb 2020) before stopping due to the COVID-19 pandemic.

A patient flow for the clinic day was as follows:

1. Part 1 (Tests): Visual acuity and Ishihara colour tests, measurement of weight, height, blood pressure, Humphrey visual fields, ophthalmic imaging including optical coherence tomography (OCT) and optic disc photography. Patients were also given a symptom questionnaire to complete.

2. Part 2 (GC): Attendance for review by the clinical team as a group, which usually took 75–90 minutes. This included individual reviews within the group setting, i.e. discussion with each patient about their clinical condition and addressing any questions, whilst the rest of the group listened. After completion of the individual review within the group setting, there was an opportunity for in-depth discussion about relevant aspects as a group, for example lifestyle measures for improving headaches and supporting sustainable weight loss. The sessions ended with individual goal setting, which was shared with the clinical team. At the end of the GC, patients had the option of personal one-to-one time with the clinician.

Between Part 1 and Part 2, the clinical team reviewed the results of tests from Part 1, and summarised the finding on a ‘Results Board’ (example shown in Figure 1) for the GC session.

Figure 1.

(a) Table illustrating a typical ‘Results Board’ prepared for the GC. Colours for responses for optic disc and symptoms are coded in red, amber, or green, depending on improvement (green) or worsening (amber or red). (b) Each individual patient’s graphs showing their trend in weight since diagnosis, are also shared with patients during the virtual GC

Notes: All data in table and graphs are created for illustrative purposes only, i.e. not real patient names or data from our clinic. The weight change is not colour-coded as a patient advised that to do so can feel like being shamed. Weight is shown both in comparison to baseline weight and since last visit. We have also removed the details of weight on the y-scale of the weight trends.

Fifty-three patients were included in the pilot in-person GC. Written feedback was received from 49 patients. One hundred per cent felt more satisfied and heard, 100% felt more involved in decision-making, 98% had a better understanding of their condition, 96% felt more able to cope with their condition and keep themselves healthy, 94% rated this as a positive experience, and 90% reported improved access and more time with their clinician compared with traditional one-to-one appointments. All patients attending the GC have continued under our care and no adverse outcomes were observed.

The recurrent themes emerging from the responses to the questionnaire about the benefit gained included the patients valuing the peer support, a reduced sense of isolation, and the time spent with the clinical team, as shown in the following illustrative quotations, in response to the question on benefit gained from the GC:

“Everyone was speaking about their struggle about condition and I feel I am not the only one.”

“Hearing others having similar symptoms and learning different ways to overcome headaches”

“Meeting other people with the same condition and sharing ideas and experiences.”

Approximately 5% of patients appeared dissatisfied, either from written feedback or from observation by the clinical team. Themes emerging from their feedback included: improvement needed with patient information prior to the appointment (which we subsequently improved); and patients who felt their multiple co-morbidities may require more individual clinician time outside of the group setting. Some patients (approximately 20%) also declined participation in this pilot service prior to their attendance, advising due to their anxiety about being in a group setting. It is therefore important for a service that provides GCs to have the opt-out option for those who would prefer the traditional one-to-one clinic model.

In response to the COVID-19 pandemic, we worked with the IIH patients to develop the next iteration of the pilot service. Through patient surveys and focus group discussions, we transitioned to virtual GCs, and have been delivering these weekly since Sept 2020. To date (at the time of writing, 19 Jan 2021) we have seen 65 patients for virtual GCs, of which 51% have attended more than one GC (43% attended two GC, 6% attended three GC, and 1% attended four GC). For this newer model, patients were first seen in a technician-led clinic for the above-mentioned Part 1 tests a week or two before the GC. Patient questionnaires were completed electronically by patients via a text message link after the GCs. The virtual GCs were facilitated via a group video call on a weekday at 5 pm. In addition to the Results Board (Figure 1), the graphs showing the trend in weight from diagnosis was also shared (see Figure 1).

This virtual GC service has led to reduced time in hospital and increased access to the IIH team, with overwhelmingly positive patient feedback (median scores: patient satisfaction 9.5/10; being listened to by clinician 10/10; involved by clinician in treatment decisions 10/10; clinician explanation of treatment 10/10; and opportunity to discuss condition or treatment 10/10).

The patient flows for the in-person and the virtual GC are summarised in Figure 2. The in-person GC typically had eight to nine patients (maximum 11) per group. Unfortunately, at the start of the implementation of GCs, we encountered the problem of delay in appointment letters causing reduced attendance and smaller groups, which we subsequently addressed. The virtual GCs typically had six to eight patients per group with the intention of increasing to 10 per group. Numbers are being limited initially as we become more confident with the virtual technology.

Figure 2.

Patient flows for in-person GC (a) and virtual GC (b)

Part 1 typically takes 30 min per patient. Part 2 (GC) typically takes 90–120 min, starting with 20–30 min of the facilitator sharing the Results Board with the group and collating questions for the lead clinician. The facilitator then leaves the group to share the questions with the lead clinician. During this period, the patients have time to chat freely amongst themselves. The lead clinician then meets the group for approximately 60 min. Part 2 is concluded with goal setting (led by the facilitator) and patient feedback. This is compared with the traditional care with a similar duration in clinic but less contact time with the team, i.e. after the initial 30 min of vision assessment, visual fields and OCT, patients could wait for up to 1–2 hours in overbooked clinics, before meeting the clinician for approximately 10–15 min.

Discussion

IIH is a condition of high intracranial pressure, which can cause debilitating headaches, pulsatile tinnitus, visual disturbance, and blindness if untreated. Over 90% of IIH patients are obese women of childbearing age.⁶ Weight loss of 10–15% can lead to remission of IIH.⁷ In line with the IIH guidelines on the importance of supporting weight loss,⁸ over the past few years our service has developed a multidisciplinary team to facilitate this, including dietetics for nutrition guidance and physiotherapy for exercise implementation.

Additionally, as mentioned above, in 2017 we set up a GSTT IIH patient support group (IIH-WoW), regularly delivering workshops to support sustainable weight loss and patient wellbeing.⁴ These patient days were popular, and patients reported that they gained huge benefit from peer support and shared learnings during these sessions. The opportunity to have focus groups discussions about service following these IIH-WoW sessions provided us confidence to start the pilot GC service. The GC service differs from the IIH-WoW sessions in that the GCs provide the platform for peer discussions as well as one-to-one clinical consultations in a group setting.

Facilitating patient discussions and patient reviews during the GC is a skill, which we have continued to improve upon since the start of the pilot service. The lead clinician’s consultation style which followed Health Coaching^9,10 and Motivational Interviewing^11,12 philosophy and methods, were helpful approach in the GC setting in keeping patients engaged. With this consultation style, patients were empowered to act and come up with their own solutions.

As a team, we also encouraged the mindset with patients that IIH does not have to be a chronic condition, as remission can be achieved with weight loss in the majority of patients.^6–8 We observed that patients were most highly motivated at the start of their condition, which corresponded to an increased amount of weight loss (service audit¹³) and therefore most likely to achieve remission if intensively supported at the start of their condition compared with patients with IIH who have been attending the Neuro-ophthalmology clinics for many years (unpublished observations, ongoing audit of service).

Reflecting our experience comparing one-to-one clinics where the same information was conveyed repeatedly, with the GC sessions where the same information was covered once to a group in greater depth, we felt the GC discussions were more fulfiling with time to discuss information in greater depth and the time to discuss lifestyle measures to support the patients’ care. Our experience reflected what was found in other reports elsewhere.⁵

Conclusion

IIH can be managed safely and effectively in a GC setting. Evaluation showed this person-centred approach was preferred in our patient cohort. The pilot work enabled the successful transition to virtual GCs, allowing ongoing high quality, person-centred care despite challenges from the COVID-19 pandemic. We continue to closely evaluate and reflect on each GC to optimise patient care and service delivery.

Funding Statement

The GSTT IIH team’s training by Group Consultations Ltd, was funded by the Eye Dept, and part-subsidised by the Sir Jules Thorn Charitable Trust.

Declaration of interest statement

Alison Manson is the UK Training and Implementation Lead for Group Consultations Ltd, a not-for-profit organisation that supports training and implementation of group consultations in GP practices and NHS organisations across the UK. The other authors have no declarations.

Supplementary material

Supplemental data for this article can be accessed on the publisher’s website