An evolving engagement programme for patients with photodermatoses

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 diseasespecific 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. Acknowledgments: we wish to acknowledge all our SPS patients, their families and staff for their invaluable contributions.

Daylight photodynamic therapy at home

Daylight photodynamic therapy (DPDT) is an established treatment for field-change actinic keratoses (AK) with high rates of satisfaction and success. In recent times there has been a push within the healthcare industry to reduce avoidable clinic time and complement it with community-based healthcare, including self-administration therapies. The importance of 'decentralized' healthcare and at-home therapies has been emphasized by the recent COVID-19 pandemic - access to treatments is restricted and many patients are not receiving the appropriate care in an attempt to minimize hospital-based treatments. In this project, we deconstructed DPDT and by utilizing principles of design and the concept of realistic medicine, transformed it into a user-friendly, environmentally conscious and engaging at-home therapeutic option. Information on protocols and best practice was obtained from clinical colleagues and a map of the patient pathway was outlined. The treatment was broken down and re-formed into simple steps, taking care with the number of instructions to prevent confusion. The physical form of the at-home kit was designed to facilitate the required materials for DPDT, while being simple and methodical to follow. Steps were separated into individual numbered sections, with only the materials needed at each step visible. Simple graphics are displayed alongside relevant instructions, with colouring to highlight importance. The at-home kit was iteratively improved with input from end users. As part of this initiative the DPDT athome kit is designed and prototyped in order to be posted directly to the user. In trialling this kit preclinically, the theoretical patient journey could be visualized, starting with the unboxing of the kit, then followed by the guides and directed procedure. Through feedback, iterations to the design have subsequently been made that efficiently translate the clinical procedure into a successful at-home design. One of the key principles of realistic medicine to consider is the reduction of waste. In this kit we have, where possible, used recycled and recyclable materials, and are in the process of incorporating medically approved biodegradable gloves, which will instantly reduce a high fraction of the nonrecyclable excess. Implementation of the kit in routine clinical practice will provide important feedback allowing further iterations to the design of the kit. Involving patients directly with the development work and continuously responding to the patient experience will significantly improve the final design of the at-home kit. Helping to implement an option to take this important treatment away from a hospitalized environment represents a paradigm shift in the possible delivery of DPDT and can be useful to optimize treatment delivery on a per-patient basis.

Far ultraviolet-C radiation from a filtered KrCl lamp does not result in migration of Langerhans cells in human skin

There is global interest in both the beneficial and detrimental health effects of ultraviolet-C (UVC) radiation in the wavelength range 200-230 nm (known as Far-UVC). Technology using Far-UVC is proposed as a highly effective control measure for reducing the transmission of COVID-19. Far-UVC, and other wavelengths of UVC, are well-known to efficiently inactivate pathogens in air and on surfaces. Although studies have shown irradiation of skin with 254 nm UV results in DNA damage in the epidermal basal layer, irradiation with Far-UVC (222 nm) shows minimal DNA damage and only in the granular layer, which is comprised of non-proliferating keratinocytes. Therefore, accumulation of these DNA photoproducts would not be expected to be associated with cancer risk. It has also been shown that even high doses of Far-UVC exposure to human skin do not induce erythema. However, the effects of Far-UVC on the immune system are, to the best of our knowledge, unknown. It is well-reported that both ultraviolet B (UVB 280-315 nm) and ultraviolet-A (UVA 315-400 nm) have effects on cutaneous Langerhans cells (LC), inducing migration from the epidermis to the draining lymph nodes, thereby suppressing skin immune function. Here we present data generated in a range of skin types (Fitzpatrick II-V) demonstrating little or no impact of Far-UVC on the cutaneous immune system, as assessed by Langerhans cell migration, at doses of up to 3,000 mJ/cm2 (US daily limit is 450 mJ/cm2). These results support the safety of filtered Far-UVC use, which could have a transformative effect on public health, allowing effective virus inactivation and reduction of transmission independent of human behavior. Conflict of interest disclosure: the authors state no conflict of interest. However, MJC and RPH are directors of Ten Bio Ltd, a company focused on developing human skin explant models.

Further evidence that far-UVC for disinfection is unlikely to cause erythema or pre-mutagenic DNA lesions in skin

It is well understood that ultraviolet-C (UVC) radiation is effective for the destruction of micro-organisms and drug-resistant bacteria and is being investigated for its effectiveness at destroying the virus responsible for the current Covid-19 global pandemic. Far-UVC (200 - 220 nm) has been proposed as an effective disinfection radiation that is safe to humans. In 2014, Woods et al. undertook a first-in-person study to assess the effect on skin of a 222 nm UVC emitting device (Sterilray disinfectant wand, Healthy Environment Innovations, Dover, NH, USA).