The HAIR-QoL measure Part 1: What are the quality of life issues for people with cancer with chemotherapy-induced alopecia?

Abstract

This paper describes the development of the provisional HAIR-QoL questionnaire on the impact of chemotherapy-induced alopecia on health-related quality of life. A total of 43 items have been developed. IntroductionChemotherapy Induced Alopecia (CIA) is the most visible side effect of chemotherapy treatment, carrying an important psychosocial burden, and negatively affecting health-related quality of life (HRQoL). No internationally validated instrument for the severity and impact of CIA exists for people with cancer for both sexes, which has hindered research in this area. Therefore, our aim was to develop a patient-reported measure for use in research and patient care. MethodsWe established a list of potential issues based on experiences of patients and healthcare professionals (HCPs) through a literature review, interviews, and focus groups with 52 patients in various cancer centres from three countries. Thereafter, a total of 51 eligible patients and 11 HCPs from four countries scored these issues on relevance and priority before translating into items for the provisional HAIR-QoL questionnaire. ResultsThe literature search identified 293 issues, and focus groups and interviews another 618 issues. Removing duplicates and general HRQoL issues resulted in 95 pertinent issues across 6 health-related QoL domains: (1) meaning and importance of hair, (2) satisfaction with the received information regarding hair loss and preparedness, (3) impact of hair loss on self, (4) impact of hair loss on others, (5) management of changes/side effects, and (6) regrowth of hair. Differences in relevance scores could be detected between males and females, and were associated with 5 items on the wearing of a wig/head cover (Z = 2.9–3.4, p between 0.001 and 0.004). Also relevance scores for ‘wearing a wig/head cover for my partner/children’ were higher for female patients with breast cancer compared to other cancers (Z = 3.2, p = 0.001). The calculated scores on relevance and priority led to a total of 43 issues that have been translated into items. ConclusionThis study shows that people with cancer with CIA experience important HRQoL issues, not adequately measured by existing HRQoL measures. CIA can affect male people with cancer as much as it can affect females. The provisional HAIR-QoL questionnaire provides an optimal approach for multidisciplinary teams who care for people with cancer in understanding their patients’ concerns and priorities around CIA.