Health state utilities associated with caring for an individual with cutaneous T-cell lymphoma (CTCL).

Four vignettes were developed describing the caregiver experience for an individual with CTCL on i) second line treatment, ii) third line treatment, iii) end of life care, iv) a post-patient death. One hundred interviews were conducted to evaluate the health state vignettes. The pattern of results was similar across the evaluation methods: second line treatment (VAS: 39.2, TTO = 0.52, EQ-5D-5L: 0.56), third line treatment (VAS: 31.1, TTO = 0.39, EQ-5D-5L: 0.37), end of life care (VAS: 28.2, TTO = 0.37, EQ-5D-5L: 0.31) and post-patient death (VAS: 41.2, TTO = 0.63, EQ-5D-5L: 0.59). Limitations and conclusions: These findings highlight the substantial burden of caring for an individual with CTCL and the importance of including caregiver burden in the health technology assessment review process. A limitation is the hypothetical vignette approach, which meant the TTO participants did not have experience of caring for individuals with CTCL, but were imagining this state. There is also the possibility that they may also be considering the patient experience when responding to the questions.