Measurement and Evaluations in Cancer Care最新文献

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.

Introduction

Chemotherapy 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.

Methods

We 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.

Results

The 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.

Conclusion

This 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.

Background

Despite the importance of understanding the concept of good death (GD) from different cultural perspectives, it has not been assessed in Arab communities because of the unavailability of validated instruments. This study aimed to evaluate the psychometric properties of the Arabic version of the Good Death Inventory (GDI-A) questionnaire used among Palestinian bereaved family members of cancer patients.

Methods

A cross-sectional methodological study was applied. An online survey was adopted as a data collection method. The online survey was delivered through Qualtrics and posted in cancer and health-related social media groups on Facebook, the most commonly utilized social media platform in Palestine. A convenient and snowball sampling of 285 family members of deceased adult cancer patients was adopted. The participants were asked to complete GDI online survey. A confirmatory factor analysis (CFA), content validity, and internal consistency reliability were assessed.

Results

Participants showed a good perspective about death (M = 300.01, SD = 31.09). Significant differences in GDI-A total score were reported with the “patient’s relationship with family” (M = 303.02, SD = 31.42), F(2, 282) = 7.787, p = .001, “educational level” (M = 305.97, SD = 28.38), F(4, 280) = 3.685, p = .006, and “member’s relationship with the patient” (M = 311.74, SD = 16.57), F(5, 279) = 3.125, p = .009. The Arabic version scale-level content validity index and the scale-level content validity index-universal agreement were 0.96 and 0.85, respectively. Factor analysis with a varimax rotation matrix revealed that 16 factors explained 76.08% of the variance.

Conclusion

This study provides the literature with an Arabic questionnaire for understanding the concept of a GD from the perspective of bereaved families. The GDI Arabic translated version is a psychometrically robust instrument with satisfactory measurement, which can be used for evaluating a GD among bereaved families.