Chemotherapy-induced peripheral neuropathy (CIPN), characterised by subjective sensory and motor symptoms felt on hands and feet, is one of the less known side-effects of chemotherapy. For many patients, their awareness of CIPN begins with information provided by clinicians during pre-chemotherapy consultations. However, there is limited understanding of how patients develop their understanding and perception of CIPN or of the experiences of clinicians providing CIPN information. This study explored patient’s and clinician’s experience of care provision, information and support for CIPN.
Data collection was conducted between July-November 2019 in a London hospital using multiple qualitative methods. Non-participant observations of pre-chemotherapy consultations between clinicians and people with breast or colorectal cancer (n= 9) were conducted. We also undertook semi-structured interviews with people who had breast or colorectal cancer (n=11) and clinicians (n=9). Data were analysed using inductive reflexive thematic analysis.
Three major themes emerged. First, CIPN is a hidden chemotherapy side-effect not only because of its subjective nature but due to patient perspectives (e.g. fear of death, lack of familiarity with CIPN and evolving perception and understanding) and clinician perspectives (e.g. relative insignificance of CIPN, focus on acute symptoms, dependence on patient reporting and feelings of helplessness) that affect CIPN assessment and management. Second, the assessment and management of CIPN are disconnected. Finally, whilst openness was expected by both patients and clinicians when it comes to CIPN symptom reporting, information provision and management, this was not always forthcoming.
Our findings provide insights into patients’ and clinicians’ CIPN experiences. Issues such as patients’ lack of familiarity with CIPN, limited knowledge and understanding about CIPN among clinicians and fragmentation between CIPN assessment, management and support were highlighted. Our findings can inform future CIPN interventions that may better address patients’ support needs and enhance overall patient experience.
Clinical trial identification
Legal entity responsible for the study
King's College London.
National Institute for Health Research.
All authors have declared no conflicts of interest.