PD06: An evolving engagement programme for patients with photodermatoses

TY - JOUR

T1 - PD06: An evolving engagement programme for patients with photodermatoses

AU - O'Reilly, Marese

AU - Logan, Stephanie

AU - Yule, Susan

AU - Eadie, Ewan

AU - Ibbotson, Sally

N1 - © 2022 British Association of Dermatologists 2022

PY - 2022/7/5

Y1 - 2022/7/5

N2 - We previously reported on our experience of an in-person Scottish Photobiology Service (SPS) patient engagement event in 2019 and of its utility in defining what matters to patients with photosensitivity. We identified key issues with delays in referral from primary care, lack of availability of peer support and a need for disease-specific information to raise awareness of photosensitivity for family and employers. Through a follow-up workshop, we identified a workstream of activities planning to address these issues, which were modified by the subsequent COVID-19 pandemic. However, we successfully moved our programme to a virtual platform, and we report on our progress. Twice-yearly virtual TEAMS patient engagement half-day events, attended by patients and staff, provided patients with a forum to discuss with each other issues that they have identified as being important to them. These ranged from the isolation, anxiety and embarrassment associated with photosensitivity, dealing with friends who do not understand their condition, through to coping mechanisms and practicalities, such as sourcing sun protective clothing, dealing with sports activities and photoprotective measures in schools. The virtual events have received extremely positive feedback both in terms of content and utility for patients, as well as the convenience of the virtual format. To supplement these activities, we have also distributed twice-yearly SPS newsletters since 2020, initiated at the start of the COVID-19 pandemic, to ensure our patients knew we were there for them, despite the challenges of the pandemic and, again, this was most positively received. Regarding delays in referral from primary care, patient feedback indicated that this was mainly due to not being taken seriously, possibly due to a lack of understanding of photosensitivity in community care. We are addressing this by developing a ‘photosensitivity red flag’ poster for distribution throughout primary care in Scotland to raise awareness of the symptoms to look out for in photosensitivity conditions. Finally, we have also embarked on creating a series of disease-specific podcasts. These involve an informal discussion between a patient with photosensitivity and a consultant photodermatologist, with a mediator present, to raise awareness of the true impact of a range of photodermatoses on many aspects of life. We demonstrate this ongoing programme of diverse patient engagement and educational activities in photodermatology, to highlight the model of a multifaceted hybrid approach to provide additional support for patients with photodermatoses.

AB - We previously reported on our experience of an in-person Scottish Photobiology Service (SPS) patient engagement event in 2019 and of its utility in defining what matters to patients with photosensitivity. We identified key issues with delays in referral from primary care, lack of availability of peer support and a need for disease-specific information to raise awareness of photosensitivity for family and employers. Through a follow-up workshop, we identified a workstream of activities planning to address these issues, which were modified by the subsequent COVID-19 pandemic. However, we successfully moved our programme to a virtual platform, and we report on our progress. Twice-yearly virtual TEAMS patient engagement half-day events, attended by patients and staff, provided patients with a forum to discuss with each other issues that they have identified as being important to them. These ranged from the isolation, anxiety and embarrassment associated with photosensitivity, dealing with friends who do not understand their condition, through to coping mechanisms and practicalities, such as sourcing sun protective clothing, dealing with sports activities and photoprotective measures in schools. The virtual events have received extremely positive feedback both in terms of content and utility for patients, as well as the convenience of the virtual format. To supplement these activities, we have also distributed twice-yearly SPS newsletters since 2020, initiated at the start of the COVID-19 pandemic, to ensure our patients knew we were there for them, despite the challenges of the pandemic and, again, this was most positively received. Regarding delays in referral from primary care, patient feedback indicated that this was mainly due to not being taken seriously, possibly due to a lack of understanding of photosensitivity in community care. We are addressing this by developing a ‘photosensitivity red flag’ poster for distribution throughout primary care in Scotland to raise awareness of the symptoms to look out for in photosensitivity conditions. Finally, we have also embarked on creating a series of disease-specific podcasts. These involve an informal discussion between a patient with photosensitivity and a consultant photodermatologist, with a mediator present, to raise awareness of the true impact of a range of photodermatoses on many aspects of life. We demonstrate this ongoing programme of diverse patient engagement and educational activities in photodermatology, to highlight the model of a multifaceted hybrid approach to provide additional support for patients with photodermatoses.

U2 - 10.1111/bjd.21553

DO - 10.1111/bjd.21553

M3 - Meeting abstract

SN - 0007-0963

VL - 187

SP - 214

EP - 215

JO - British Journal of Dermatology

JF - British Journal of Dermatology

IS - S1

M1 - PD06

ER -