Assessing quality of life with ePROMs in patients with cutaneous lymphoma

Abstract

Cutaneous lymphoma significantly impacts an individual’s quality of life (QoL). Electronic patient reported outcome measures (ePROMs) can be used to assess the impact of cutaneous lymphoma on a patient’s QoL by a series of questions exploring symptoms, emotions and functional ability. This service evaluation aimed to establish the feasibility of ePROMs at assessing QoL and patient opinions on this method. Data was analysed to establish what percentage of patients receiving the invitation to fill in the ePROMs questionnaire were actually completing it, and for those who weren’t we investigated possible reasons for this. Responses were also analysed to investigate whether a variety of parameters (stage of disease, gender, age, current treatment) affected the responses to the questionnaire. Additionally, between the 28th and the 26th of May, 19 patients and 3 clinicians were interviewed in order to gather their thoughts regarding ePROMs. 76% of patients completed the questionnaire. Analysis of responses by age and gender did not reveal any considerable trends. However, those with advanced stage disease demonstrated a trend towards higher scores on the questionnaire when compared with those with early-stage disease. Furthermore, those undergoing active treatment did have higher scores across all domains compared with those who were under surveillance and/or receiving topical therapies. On the whole opinions regarding ePROMs were positive. Several patients commented on the ease of completion and relevance of the questionnaire to their condition. Common obstacles were the lack of a smartphone or internet access. Clinician’s opinions were on the whole positive. They commented that patient responses to the questionnaire prompted discussions around the psychological impact of their disease within consultations. However, it was noted by all 3 clinicians that their work was slowed down by the use of this questionnaire. This service evaluation shows that the use of ePROMs questionnaire is feasible and does have an adequate level of acceptance by both patients and clinicians. In the future, this service could be utilised to monitor disease progression and assess treatment outcomes in these patients.