PATIENT CARE
in such a small country with a network on scalp cooling, there is much to learn from each other and many questions open for research to improve this supportive care. Besides the variables mentioned above, in the registry patients are also asked about their opinion of the accessibility and expertise on scalp cooling of the nursing staff. Therefore, healthcare professionals can also learn whether there is some improvement possible in their routine daily care. CHILL has launched a website that contains a range of information about cancer related alopecia. Patients can access information about hair loss in general, but also about coping with alopecia. There is also extensive information about scalp cooling, including practical advice, videos and pros and cons of the treatment. Finally, patients can enter the type of chemotherapy they will receive and get a personalised overview of the chance of hair loss with and without scalp cooling. They are guided through some statements about hair loss and scalp cooling and there is a summary to help them to decide whether scalp cooling is for them. As well as Prof Young and Dr van den Hurk, the CHILL executive board also includes Hope Rugo, MD (UCSF), Helen Diller (Family Comprehensive Cancer Center, San Francisco), Mario Lacouture, MD (Memorial Sloan Kettering Cancer Center in New York City), Fran Boyle, MD and Julie Winstanley, PhD, MSc (Patricia Ritchie Centre for Cancer Care and Research, Mater Hospital and University
The effectiveness of scalp cooling depends on type and dose of chemotherapy.
of Sydney, Australia). CHILL has contacts with healthcare professionals from each continent; a network of clinicians, nurses and researchers that is expanding with several new countries each year. The database and website has been funded by British manufacturer Paxman, maker of the Paxman Scalp Cooling System and Dignitana, maker of The DigniCap Scalp Cooling System.
Dr van den Hurk added: “The participating hospitals invest themselves too, as they have to complete the clinical data in the database and provide the patient with a log in for the registry. In return, they have detailed information about hair loss and scalp cooling available that can be used to optimally inform the patients facing the prospect of alopecia. Their efforts are two-sided: useful for patient care and for science.”
CSJ
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