"If we had sessions face-to-face, I know I would have missed a couple of sessions because there were days I didn't have the strength to get up, let alone travel all the way [to the hospital]…but I could be in my bed listening."
"The virtual nature of the group…meant we were perhaps more glued to the screen…where a face-to-face session would have…increased the time we spent moving or being mindful."
Those were the reflections of sickle cell disease (SCD) patients living with persistent pain on their experiences of a pain management programme that moved online in response to the COVID-19 pandemic.
The team, from St George's University Hospitals in London, adapted their pre-existing in-person programme to the challenges of the virtual environment, shortening the weekly sessions and striving to retain the group dynamic.
While they improved accessibility, with increased attendance at times of difficulty, the challenges included reduced physical activity from attending in person and reduced movement within the sessions, as well as the limitations of the platform.
Nevertheless, remote pain management programmes "appear to have great potential for people living with sickle cell disease, particularly in terms of increasing access," said Rebecca McLoughlin, a specialist physiotherapist and co-lead of the pain management programme.
She presented their findings at the British Society for Haematology 2021 Virtual Annual Scientific Meeting on April 26.
Group-Based and Person-Centred
McLoughlin began by noting that it is "well established" that both acute and persistent pain, defined as pain that is present on most days over a period of 6 months or more, is evident in SCD.
Pain management programmes are group interventions of varying length, with a "less intensive" programme tending to be around 25–30 hours, but they can last up to 70 hours in total.
They are largely delivered in outpatient clinics and facilitated by an interdisciplinary team comprising clinical psychologists and physiotherapists, alongside nurses, occupational therapists, and clinicians.
While the content is person-centred, it is a complex package of interventions based on cognitive and behavioural principles, with the aim of increasing quality of life and reducing disability and distress.
For their interdisciplinary management programme 'Breaking the Cycle', McLoughlin and a clinical psychologist ran eight weekly sessions of 4.5 hours each, with follow-up at 1, 6, and 12 months, delivering six face-to-face programmes between 2016 and 2019.
Retaining the Group Effect
However, "like all services in 2020 and 2021," McLoughlin said they had to adapt their service for remote delivery in response to the COVID-19 pandemic, and they focused on retaining the important features of the original face-to-face programme.
They changed the format to make each weekly session "significantly shorter," feeling that two-and-a-half hours was "the most that we could probably invite people to spend in front of a screen".
However, they tried to compensate by increasing the number of weekly sessions to 10, and retaining the follow-up at 1, 6, and 12 months.
"Other aspects that we were aware we needed to think about carefully…were how to retain the group effect," she said, as "we know that that normalising effect of a group can be helpful when looking at challenging situations".
"We also wanted to retain the sense of collaboration and shared learning," McLoughlin added, rather than allowing the sessions to become too educational, "because we know that education alone is a weak facilitator of behaviour change".
A focus was also kept on between-session review and reflection, and the team made sure time was set aside for movement and mindfulness practice in each session. They also administered a series of patient-reported outcome measures.
Reduced Burden and Fewer Distractions
The current programme included five women and one man, whose ages ranged from 27–45 years. Five of the participants were working full or part time, "which is quite a lot higher than in our previous programmes".
At the end of the course, the team found that attendance was high, at 93% attendance in the first 10 weeks.
Importantly, participants were able to attend at times of difficulty and increased pain, and fit the sessions around work, while one overseas family member was able to attend a friends and family session, "which obviously wouldn't have happened in a face-to-face format".
The participants also benefited from the reduced burden of not having to attend a session at the hospital, particularly as the pandemic left some afraid to go out, and others said they felt less distracted thanks to not having to share their physical space with other people.
However, they did experience some disadvantages from the remote delivery, including that it felt "less natural" than it would in person, and that simply travelling to the centre had in itself encouraged movement.
Participation was also limited by the technology and the quality of the internet connection.
Reducing Didactic Teaching
The programme facilitators felt the virtual format increased accessibility and attendance during times of difficulty, and made the integration of strategies directly into the home and the sharing of videos and media easier.
However, alongside the loss of physical activity in going to the sessions and reduced movement during them, the facilitators felt it was harder to detect opposition or a lack of understanding among participants, and there was an over-dependence on delivery via presentations.
McLoughlin said members of the team are going to continue gathering feedback and look at the 12-month outcomes, and hopefully refine and deliver another programme in the near future.
She said they will explore some "alternative platforms, potentially with increased functionality," such as interactive whiteboards, and look at how to improve information sharing and "avoid didactic teaching as much as possible".
Great Engagement
In the following discussion, session Chair Sarah Jordan, clinical nurse specialist, University College London Hospital, praised the "great engagement from patients" that the team achieved, and asked whether there was any unexpected feedback.
McLoughin replied that the one thing that they "hoped for but weren't sure would happen" was participants engaging on days when they were in great difficulty, joining from their beds, or with their cameras off and simply listening.
In their previous in-person programmes they had talked about patients trying to attend on a difficult day, "but obviously when you've got to travel somewhere that's much, much harder," so for McLoughlin and the team it was "really encouraging to see people still wanting to try to dial in and join us".
Nevertheless, there were issues around what participants were able to take in on those difficult days and "how it felt to be part of the group but not really in the discussions," and it could have been more problematic had the group been less supportive of each other.
McLoughlin also emphasised that long-term behaviour change is the key goal of the pain management programme, so it will take up to the 12-month assessment before they will be able to identify "gaps in knowledge or see areas that didn't quite land as well with remote delivery".
No funding declared.
No relevant financial relationships declared.
BSH 20212 Virtual ASM: Reflections on remote delivery of 'Breaking the cycle' a pain management programme for people with Sickle Cell Disease. Presented 26 April.
