Measurement and Evaluations in Cancer Care最新文献

{"title":"The HAIR-QoL measure Part 2: Validation of an instrument to measure of the severity and impact of chemotherapy-induced alopecia (CIA)","authors":"Julie Winstanley ,&nbsp;Laura Libreros-Peña ,&nbsp;Dorthe Schaffrin-Nabe ,&nbsp;Azra Arif ,&nbsp;Esther de Vries ,&nbsp;Annie Young ,&nbsp;Alice Markussen ,&nbsp;Hope S. Rugo ,&nbsp;M. Dercksen ,&nbsp;Takayuki Kinoshita ,&nbsp;Frances Boyle ,&nbsp;Corina van den Hurk","doi":"10.1016/j.ymecc.2023.100003","DOIUrl":"10.1016/j.ymecc.2023.100003","url":null,"abstract":"<div><h3>Objective</h3><p>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.</p></div><div><h3>Methods</h3><p>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.</p></div><div><h3>Results</h3><p>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<strong>.</strong> Psychometric properties were reported to be very good/excellent for all four subscales and were found to be sensitive to detecting group differences.</p></div><div><h3>Conclusion</h3><p>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.</p></div>","PeriodicalId":100896,"journal":{"name":"Measurement and Evaluations in Cancer Care","volume":"1 ","pages":"Article 100003"},"PeriodicalIF":0.0,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949877523000035/pdfft?md5=a8d92d8f2bbc5fe4d14a03a53d719afa&pid=1-s2.0-S2949877523000035-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135714671","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Psychometric properties of the Arabic version of the good death inventory (GDI-A) questionnaire tested on Palestinian family members of deceased adult cancer patients","authors":"Hammoda Abu-Odah ,&nbsp;Frances Kam Yuet Wong ,&nbsp;Juanjuan Zhao ,&nbsp;Abdallah Ahmad Alwawi ,&nbsp;Ali Alkhatib ,&nbsp;Alex Molassiotis","doi":"10.1016/j.ymecc.2023.100001","DOIUrl":"https://doi.org/10.1016/j.ymecc.2023.100001","url":null,"abstract":"<div><h3>Background</h3><p>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.</p></div><div><h3>Methods</h3><p>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.</p></div><div><h3>Results</h3><p>Participants showed a good perspective about death (<em>M</em> = 300.01, <em>SD</em> = 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, <em>p</em> = .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, <em>p</em> = .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.</p></div><div><h3>Conclusion</h3><p>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.</p></div>","PeriodicalId":100896,"journal":{"name":"Measurement and Evaluations in Cancer Care","volume":"1 ","pages":"Article 100001"},"PeriodicalIF":0.0,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"67739256","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The HAIR-QoL measure Part 1: What are the quality of life issues for people with cancer with chemotherapy-induced alopecia?","authors":"C. van den Hurk ,&nbsp;L. Libreros-Peña ,&nbsp;J. Winstanley ,&nbsp;A. Arif ,&nbsp;D. Schaffrin-Nabe ,&nbsp;E. de Vries ,&nbsp;A. Young ,&nbsp;F. Boyle","doi":"10.1016/j.ymecc.2023.100002","DOIUrl":"10.1016/j.ymecc.2023.100002","url":null,"abstract":"<div><p>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.</p></div><div><h3>Introduction</h3><p>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.</p></div><div><h3>Methods</h3><p>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.</p></div><div><h3>Results</h3><p>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.</p></div><div><h3>Conclusion</h3><p>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.</p></div>","PeriodicalId":100896,"journal":{"name":"Measurement and Evaluations in Cancer Care","volume":"1 ","pages":"Article 100002"},"PeriodicalIF":0.0,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949877523000023/pdfft?md5=36ff905b095d3abbff32661540c790b3&pid=1-s2.0-S2949877523000023-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135714999","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}