Improving Information Provision on Chemotherapy-Induced Alopecia and Scalp Cooling: A Comprehensive Approach Including A Website and Web-Based Decision Tool

Abstract

Objective: Alopecia is a frequently occurring side effect of chemotherapy and has high impact on many patients. Currently, scalp cooling is the only method to prevent this chemotherapy-induced alopecia (CIA) and it is effective in about half of the patients. Since determinants of the success are largely unknown, all patients should be prepared for potential hair loss. The objective was to provide up-to-date online information about CIA and scalp cooling to support patients in coping with CIA and in their choice regarding scalp cooling. Methods: Essential aspects of delivering information and lack of information were identified during focus groups, interviews, and a questionnaire survey among cancer patients, and in discussions with nurses. Results: The obtained information was used to develop a website (www.scalpcooling.org) and a web-based tool. It combines scientific evidence and practical advice about CIA and regrowth of hair, scalp-cooling tolerance, efficacy and safety, as well as an overview of possible advantages and disadvantages. The web-based tool provides tailored information about the probability of CIA with and without scalp cooling in particular chemotherapy regimens. Besides, the tool offers patients' support in decision-making by allowing them to reflect and consider their values and opinions about scalp cooling. Conclusions: This comprehensive information is useful during nursing consultations.

Keywords

• Chemotherapy-induced alopecia
• decision aid
• hair loss
• informed treatment decision
• patient-tailored information
• scalp cooling