Improving preparation for scalp cooling: Learning from women undergoing chemotherapy for early-stage breast cancer-The COOL study

Abstract

Aims and objectives: This study set out to understand the experiences and expectations of scalp cooling among women with early-stage breast cancer. The objective was to develop patient co-produced information resources to better inform and prepare women considering scalp cooling during chemotherapy.

Background: Treatment-induced alopecia is a common concern among women preparing for chemotherapy. Evidence indicates that many women feel inadequately prepared for scalp cooling, resulting in potentially mitigable distress and disappointment.

Design: A single-site, sequential, explanatory mixed-methods design was used. Participants included women with early-stage breast cancer who had previously or were currently using, scalp cooling. Women completed an online survey exploring scalp cooling experiences and expectations and self-selecting participants took part in one semi-structured, audio-recorded interview. Guidelines for Good Reporting of a Mixed Methods Study were followed.

Results: Forty-nine women (69%) consented to take part in the survey and 23 took part in an interview. Most women described losing more hair than they expected. Many described feeling inadequately prepared for the discomfort of scalp cooling; the additional time needed to accommodate scalp cooling during treatment and, that they lacked information about self- care to help minimise hair loss. Importantly, several participants described variability in nurses' knowledge and practical skills regarding scalp cooling.

Conclusions: To optimise experience of scalp cooling, women need comprehensive preparatory information about variability in efficacy of scalp cooling; time needed to accommodate scalp cooling; hair care during treatment, and the potential discomfort associated with it. They also need nurses to be confident and well informed about scalp cooling processes.

Relevance to clinical practice: Our study led to the development of online, patient co-produced resources to help prepare and inform women considering using scalp cooling; and an online scalp cooling training module and checklist for nurses. Links to the resources are included in the manuscript.

Keywords: breast cancer; chemotherapy; co-production; nurse training; patient experience; scalp cooling.