11 research outputs found

    A questionable factor structure of the multidimensional fatigue inventory in the general Dutch population

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    Objective: One of the most commonly used tools to measure fatigue is the Multidimensional Fatigue Inventory (MFI). Studies into the scale structure of the MFI show discrepant findings. The objective of this study was to investigate the scale structure of the MFI in the general Dutch population.Study design and Setting: Using data from a Dutch probability-based internet panel (n = 2512), the original 5-factor model, a 4-factor, and a 5-and 4-bifactor model of the MFI were tested with confirmatory factor analyses. Additional models were investigated using exploratory factor analysis.Results: Results neither confirmed a 5-factor (RMSEA = 0.120, CFI = 0.933, TLI = 0.920) nor a 4-factor model (RMSEA = 0.122, CFI = 0.928, TLI = 0.917). The two bi-factor models also showed a poor fit (bi-4-factor: RMSEA = 0.151, CFI = 0.895, TLI = 0.873; bi-5-factor: RMSEA = 0.153, CFI = 0.894, TLI = 0.871). Exploratory factor analysis did not support an alternative model, but seemed to show robustness in the loading of the original general fatigue items.Conclusion: Our results did not provide empirical support for a four or five (bi-)factor structure of the MFI, nor for an alternative model. The most reliable scale of the MFI seems to be the general fatigue scale that could be used as a general indicator of fatigue. (C) 2021 The Authors. Published by Elsevier Inc.Hereditary cancer genetic

    Mainstream germline genetic testing in men with metastatic prostate cancer: design and protocol for a multicenter observational study

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    BACKGROUND: In international guidelines, germline genetic testing is recommended for patients with metastatic prostate cancer. Before undergoing germline genetic testing, these patients should receive pre-test counseling. In the standard genetic care pathway, pre-test counseling is provided by a healthcare professional of a genetics department. Because the number of patients with metastatic prostate cancer is large, the capacity in the genetics departments might be insufficient. Therefore, we aim to implement so-called mainstream genetic testing in the Netherlands for patients with metastatic prostate cancer. In a mainstream genetic testing pathway, non-genetic healthcare professionals discuss and order germline genetic testing. In our DISCOVER study, we will assess the experiences among patients and non-genetic healthcare professionals with this new pathway. METHODS: A multicenter prospective observational cohort study will be conducted in 15 hospitals, in different regions of the Netherlands. We developed an online training module on genetics in prostate cancer and the counseling of patients. After completion of this module, non-genetic healthcare professionals will provide pre-test counseling and order germline genetic testing in metastatic prostate cancer patients. Both non-genetic healthcare professionals and patients receive three questionnaires. We will determine the experience with mainstream genetic testing, based on satisfaction and acceptability. Patients with a pathogenic germline variant will also be interviewed. We will determine the efficacy of the mainstreaming pathway, based on time investment for non-genetic healthcare professionals and the prevalence of pathogenic germline variants. DISCUSSION: This study is intended to be one of the largest studies on mainstream genetic testing in prostate cancer. The results of this study can improve the mainstream genetic testing pathway in patients with prostate cancer. TRIAL REGISTRATION: The study is registered in the WHO's International Clinical Trials Registry Platform (ICTRP) under number NL9617

    Female fertility after colorectal surgery for familial adenomatous polyposis: a nationwide cross-sectional study

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    Background: Information on postoperative fertility problems in female patients with familial adenomatous polyposis (FAP) is scarce. Previous studies in FAP or colitis patients almost uniformly describe a reduction in fertility after ileal pouch-anal anastomosis, compared with ileorectal anastomosis. Objective: To describe fertility problems in female FAP patients after colectomy and to investigate the relationship between self-reported fertility problems and the type of operation and other surgery-related factors (eg, comorbid conditions). Methods: A questionnaire addressing surgery, fertility problems, and desire to have children was sent to a nationwide sample of FAP patients. Medical data were verified in the FAP-registry of the Netherlands Foundation for the Detection of Hereditary Tumors. Differences between women with and without fertility problems were investigated. Results: Of 138 patients, 23 (17%) reported current or past fertility problems. The prevalence of fertility problems was similar among those who had undergone ileorectal anastomosis, ileal pouch-anal anastomosis, and proctocolectomy with ileostomy. None of the other surgery-related factors, nor desmoid tumors or cancer were associated significantly with the development of fertility problems. Patients reporting fertility problems were significantly younger at diagnosis of FAP (mean, 20 vs. 27 years, P < 0.05) and at the time of the first surgical procedure (mean, 22 vs. 28 years, P < 0.05). Conclusions: The risk of developing postoperative fertility problems is not associated significantly with the type of surgery, indication for surgery, complications, or other comorbid conditions. Postoperative fertility problems are more common among women who had their first surgical procedure at a younger age

    The cancer worry scale: detecting fear of recurrence in breast cancer survivors.

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    Item does not contain fulltextBACKGROUND: In 9% to 34% of cancer patients, the fear of cancer recurrence becomes so overwhelming that it affects quality of life. Clinicians need a brief questionnaire with a cutoff point that is able to differentiate between high- and low-fearful survivors. OBJECTIVE: This study investigated if the Cancer Worry Scale (CWS) could serve as an instrument to detect high levels of fear of recurrence in female breast cancer survivors. METHODS: One hundred ninety-four female breast cancer patients were assessed up to 11 years after their primary treatment for cancer. The women returned the questionnaires including the 8-item CWS, 2 items of the Cancer Acceptance Scale, the Checklist Individual Strength-Fatigue subscale, and the Cancer Empowerment Questionnaire. RESULTS: A cutoff score of 13 versus 14 (low: /=14) on the CWS was optimal for detecting severe levels of fear of recurrence. A cutoff score of 11 versus 12 (low: /=12) was optimal for screening. The Cronbach alpha coefficient of the CWS was .87; evidence to support the convergent and divergent validity of the CWS was also obtained. The CWS is able to detect high levels of fear of recurrence. CONCLUSION: The CWS is a reliable and valid questionnaire to assess fear of recurrence in breast cancer survivors. IMPLICATIONS FOR PRACTICE: With the CWS, it is possible for nurses to screen breast cancer survivors for severe levels of fear of cancer recurrence. Thereby, nurses can screen and assist survivors in accessing appropriate and available support

    Psychosocial impact of Von Hippel-Lindau disease: levels and sources of distress.

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    Contains fulltext : 89552.pdf (publisher's version ) (Closed access)Von Hippel-Lindau disease (VHL) is a hereditary tumor susceptibility syndrome, characterized by an increased risk of developing multiple benign and malignant tumors at various sites and ages with limited preventive options. This study evaluates the prevalence of distress among VHL family members and factors associated significantly with such distress. Forty-eight families with a VHL mutation were identified via the nine family cancer clinics in the Netherlands. In total, 171 family members (carriers, 50% at-risk, non-carriers) were approached, of whom 123 (72%) completed a self-report questionnaire. Approximately 40% of the VHL family members reported clinically relevant levels of distress, approaching 50% among the carriers and, possibly even more striking, 36% among the non-carriers. Having lost a first degree relative due to VHL during adolescence (OR 11.2; 95% CI 1.4-86.9) was related significantly to heightened levels of distress. Approximately, only one-third of those who reported heightened levels of distress had received professional psychosocial support. A substantial percentage of family members experience clinically relevant levels of distress. We would recommend the introduction of a procedure for screening for distress in this vulnerable population. Special attention should be paid to those individuals who have lost a close relative due to VHL during adolescence.1 mei 201

    Long-Term Morbidity and Health After Early Menopause Due to Oophorectomy in Women at Increased Risk of Ovarian Cancer: Protocol for a Nationwide Cross-Sectional Study With Prospective Follow-Up (HARMOny Study)

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    Background : BRCA1/2 mutation carriers are recommended to undergo risk-reducing salpingo-oophorectomy (RRSO) at 35 to 45 years of age. RRSO substantially decreases ovarian cancer risk, but at the cost of immediate menopause. Knowledge about the potential adverse effects of premenopausal RRSO, such as increased risk of cardiovascular disease, osteoporosis, cognitive dysfunction, and reduced health-related quality of life (HRQoL), is limited. Objective : The aim of this study is to assess the long-term health effects of premenopausal RRSO on cardiovascular disease, bone health, cognitive functioning, urological complaints, sexual functioning, and HRQoL in women with high familial risk of breast or ovarian cancer. Methods : We will conduct a multicenter cross-sectional study with prospective follow-up, nested in a nationwide cohort of women at high familial risk of breast or ovarian cancer. A total of 500 women who have undergone RRSO before 45 years of age, with a follow-up period of at least 10 years, will be compared with 250 women (frequency matched on current age) who have not undergone RRSO or who have undergone RRSO at over 55 years of age. Participants will complete an online questionnaire on lifestyle, medical history, cardiovascular risk factors, osteoporosis, cognitive function, urological complaints, and HRQoL. A full cardiovascular assessment and assessment of bone mineral density will be performed. Blood samples will be obtained for marker analysis. Cognitive functioning will be assessed objectively with an online neuropsychological test battery. Results : This study was approved by the institutional review board in July 2018. In February 2019, we included our first participant. As of November 2020, we had enrolled 364 participants in our study. Conclusions : Knowledge from this study will contribute to counseling women with a high familial risk of breast/ovarian cancer about the long-term health effects of premenopausal RRSO. The results can also be used to offer health recommendations after RRSO
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