Abstract

To estimate the healthcare resource use burden for patients with advanced stage cutaneous T-cell lymphoma (CTCL) who have exhausted all systemic treatment options, have progressed and whose symptoms are being managed until end of life in the UK. Semi-structured interviews were conducted with clinical experts from six of the seven supra-regional centres for CTCL in England and a leading Welsh centre between March 2018 and June 2018. Each respondent was responsible for end stage patient management within their catchment area. Interviews were guided by a questionnaire capturing resource use associated with pain, anxiety/depression, itch relief, pharmacological support, and skin care and wound management. The greatest burden was associated with dressings and wound care, which necessitated frequent and lengthy nurse visits (up to two hours) and constant therapies to control infection, pain and intractable pruritus. The questionnaire found that 100% of these patients needed expensive specialised dressings of which up to 20-25% required full-body coverage of dressings, with the remaining 75%-80% requiring localised coverage. Due to the frailty of skin, specialised (non-adhesive borders) dressings are needed, costing up to £63.64 per dressing. Multiple interventions were reported to be given in an attempt to alleviate the symptoms of pruritus, including anti-histamines and anti-epileptics/anti-depressants. In addition, patients are treated with oral opioids for background pain with episodes of breakthrough pain requiring subcutaneous injections of morphine on average reported monthly. The weekly cost of resource use for these patients was up to £2,095 per patient. A striking feature of end-stage management of CTCL compared to the management of other cancers at this stage is the frequency of visits and touch-points with multiple healthcare providers, all the way until death. This is likely due to the “double nature” of CTCL which requires both oncologic relief and extensive skin care, which requires daily attention and management.

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