The HAIR-QoL measure Part 2: Validation of an instrument to measure of the severity and impact of chemotherapy-induced alopecia (CIA)

Objective Chemotherapy-induced alopecia (CIA) is one of the most common and distressing side effects related to cancer treatment. Few patient-reported outcome measures (PROMs) have been developed specifically to measure the patient-experience of hair loss during chemotherapy treatment. In part I of this research, a set of provisional questionnaire items were developed for a new tool. This article focusses on the validation and psychometric testing of the CIA-specific scoring items in the provisional HAIR-QoL measure. Methods The provisional HAIR-QoL questionnaire, comprised of 43 CIA-specific items, was administered to a large sample of patients (n = 228) from 8 international centres, who were undergoing chemotherapy. Psychometric testing used a combination of Classical Test Theory (CTT) and Item Response Theory methods; Principal Components Analysis (PCA) and Rasch Analysis, respectively. Results From the initial item pool of 43 items, 28 items satisfied the criteria for inclusion into four components. The four subscales identified were as follows, 1) Concern about change in appearance, 2) Image of self, 3) Preparedness for hair loss and 4) Impact of hair loss on you and others. The results of the quantitative analyses, PCA and Rasch analysis, suggested modest amendment to the number of items to the provisional HAIR-QoL measure. Psychometric properties were reported to be very good/excellent for all four subscales and were found to be sensitive to detecting group differences. Conclusion The refined items which comprise the final HAIR-QoL measure were found to tap into several important psycho-social domains of concern for patients who experienced CIA. The subscale scores have the potential to inform future decision-making on patients’ unmet information and support needs and pave the way for personalised psychological care and more robust research on efficacy of scalp cooling.