Background:
Chimeric antigen receptor (CAR) T cell therapy is a revolutionary immunotherapy used in haematological malignancies, but is associated with life-threatening complications that may require intensive care (ICU) admission. Given these risks, patients require clear, comprehensive information before treatment.
Aims:
This study assessed the readability, quality and content of patient information resources provided by CAR T-cell centres in England.
Methods:
All 21 CAR T cell centres in England were contacted under the Freedom of Information Act 2000 to obtain resources given to patients considering CAR T cell therapy. Twenty NHS Trusts responded, providing 22 resources; including hospital(n=12), charity(n=4), and pharmaceutical(n=6) materials. Readability was assessed using six established indices via the WebFx tool, quality was assessed using the DISCERN instrument by two independent reviewers, and content by evaluating the inclusion of serious toxicities and quantitative information on ICU admission and mortality.
Results:
All resources examined were more difficult to read than recommended guidelines, not reaching targets of grade 6 or below. Pharmaceutical-produced materials had the lowest DISCERN scores, with hospital resources rated as fair quality and charity resources of good quality. Most resources described CAR T specific toxicities (95%) and the possibility of ICU admission (77%); however none provided quantitative estimates on the risks of ICU admission and only one resource for mortality.
Conclusions:
To our knowledge, this is the first study investigating readability, quality, and content of CAR T cell therapy patient resources. The readability of these resources is poorer than recommended targets, challenging the accessibility of important treatment information for patients. The lack of quantitative information regarding serious risks, such as ICU admission and mortality, may also limit patients’ understanding and fully informed consent. As CAR T cell therapy continues to expand, centres should ensure that patient information is accessible, and inclusive of risk discussion, to facilitate decision-making.