Familiarity, opinions, experiences and knowledge about scalp cooling: a Dutch survey among breast cancer patients and oncological professionals

Abstract

Objective:Scalp cooling (SC) is applied to reduce chemotherapy-induced alopecia (CIA). The aim of this study was to investigate patients’ familiarity and opinions and oncological professionals’ attitude and knowledge about SC in the Netherlands.Methods:Ex breast cancer patients, nurses and medical oncologists (MDs) from SC and non-SC hospitals filled out questionnaires.Results:The majority of MDs and nurses were satisfied with the results of SC, as were SC patients. Over 33% of MDs and nurses perceived their knowledge level insufficient to inform patients about effectiveness, which was over 43% for information about safety. MDs main reason to not apply SC was doubt about effectiveness and safety. Nurses generally offered SC to a minority of eligible patients. Patients were frequently unfamiliar with SC before diagnosis. Seventy percent of SC patients with insufficient results (20/52) reported to mind it very much. With expected success rates of 35% and 50%, respectively, 36% and 54% of patients would use SC again.Conclusion:Room for improvement has been shown for both patients’ familiarity and oncological professionals’ knowledge about SC. Sharing knowledge about results, safety and patients’ experiences will improve patient counseling and SC availability. The results of this survey led to the development of a national standard on CIA and SC.

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

“…The website that originated from this project supports cancer patients in preparing for CIA and enhancing expectations of its impact on daily life and provides insight into the advantages and disadvantages of scalp cooling. As scalp cooling is not always actively offered to all eligible patients,[17262728] the website might also be beneficial for patients who are searching for additional information before starting chemotherapy. The web-based tool also offers patients support in decision-making by allowing them to reflect and consider their values and opinions with regard to scalp cooling.…”

“…Those expectations are most often based on counseling by the medical doctor or oncology nurse before chemotherapy. [17] In a recent Australian study, patients recalled from the conversation with their medical doctor about the decision for scalp cooling, that they received information about efficacy, the fact that they might experience some additional hair loss despite scalp cooling, and the possibility of faster regrowth of hair. [27] Patients indicated that they would have preferred more information about the process of scalp cooling, tolerability issues and hair care, and also information to give to their hairdresser.…”

“…Many patients report that they would make the same choice if they might need chemotherapy in the future and would recommend scalp cooling to other cancer patients, independently whether they kept or lost their hair. [1727] At the other hand, there are also some patients with regret, mainly due to the level of discomfort, additional time spent in the hospital, and their poor outcomes regarding CIA (e.g., needing a wig or head cover). [27]…”

“…Treatment-related anxiety, which mainly manifests by constantly checking the hair, is caused by the uncertainty of hair preservation during scalp cooling. [1727] Patients describe severe hair loss despite scalp cooling as an extra disappointment,[29] a stressor, or a feeling of failing, whether or not on their part. [27] However, nurses also report that the uncertainty of the outcome of scalp cooling influences their self-confidence and makes them feel responsible for the result.…”

“…Besides, medical doctors and oncology nurses perceive their knowledge about efficacy and safety on this topic insufficient to inform patients satisfactorily. [17] Moreover, in addition, time constraints during counseling before starting chemotherapy make it difficult to address all side effects in depth. Therefore, online information regarding CIA, the scalp cooling process, and it's advantages and disadvantages would be helpful for patients who require additional information and further support in decision-making.…”