Background As a first step to reach consensus on the key constructs and outcomes in neuro-oncology caregiver research, we performed a systematic review to evaluate the constructs that are being... Show moreBackground As a first step to reach consensus on the key constructs and outcomes in neuro-oncology caregiver research, we performed a systematic review to evaluate the constructs that are being evaluated in research studies and how these have been assessed. Methods All peer-reviewed publications with primary data reporting on outcomes of family caregivers of adult primary brain tumor patients were eligible. Electronic databases PubMed/Medline, Embase, Web of Science, Emcare, Cochrane Library, and PsycINFO were searched up to September 2021. Using Covidence, title and abstract screening, full-text review, and data extraction were done by two researchers independently, with a third guiding consensus. Constructs as reported in each study, and how these were assessed were the primary result. Results Searches yielded 1090 unique records, with 213 remaining after title/abstract screening. Of these, 157 publications met inclusion criteria, comprising 120 unique studies. These originated from 18 countries and were published between 1996 and 2022. Most were observational (75%) cross-sectional (61%) studies, reporting on quantitative methods (62%). Twenty-seven different constructs were assessed and mapped along the Caregiver Health Model (CGHM) categories, namely, caregiver health, needs, tasks, beliefs and attitudes, and environment. Seventeen questionnaires were used >2 times to measure the same construct, with the vast majority of questionnaires only used across one or two studies. Conclusions Neuro-oncology caregiving research is a field gaining traction, but lags behind in clear definition of key constructs, and consistency in assessment of these constructs. Developing consensus or guidance will improve comparability of studies, meta-analyses, and advance the science more quickly. Show less
Vandenbroucke, T.; Han, S.N.; Van Calsteren, K.; Wilderjans, T.F.; Van den Bergh, B.R.; Claes, L.; Amant, F. 2016
Objective A cancer diagnosis during pregnancy may be considered as an emotional challengefor pregnant women and their partners. We aimed to identify women and partners at risk for highlevels of... Show moreObjective A cancer diagnosis during pregnancy may be considered as an emotional challengefor pregnant women and their partners. We aimed to identify women and partners at risk for highlevels of distress based on their coping profile.Methods Sixty‐one pregnant women diagnosed with cancer and their partners filled out theCognitive Emotion Regulation Questionnaire (CERQ) and the newly constructed Cancer andPregnancy Questionnaire (CPQ). K‐means cluster analysis was performed on the CERQ scales.Scores on the CPQ were compared between the women and their partners and between theCERQ‐clusters.Results Comparison of women and partners on the CPQ did not reveal significant differenceson distress about the child’s health, the cancer disease, and the pregnancy or on information sat-isfaction (P = .16, P = .44, P = .50, and P = .47, respectively). However, women were more inclinedto maintain the pregnancy than their partners (P = .011). Three clusters were retrieved based onthe CERQ scales, characterized by positive coping, internalizing coping, and blaming. Women andpartners using internalizing strategies had significantly higher scores on concerns about thechild’s health (P = .039), the disease and treatment (P < .001), and the pregnancy and delivery(P = .009) compared with positive and blaming strategies. No cluster differences were foundfor information satisfaction (P = .71) and tendency to maintain the pregnancy (P = .35).Conclusion Women and partners using internalizing coping strategies deal with the highestlevels of distress and may benefit from additional psychosocial support. Show less
Objectives: We evaluated screening for distress in terms of its ability to uncover unmet need for psychosocial services in cancer patients. Correlates of distress, need for services and met and... Show moreObjectives: We evaluated screening for distress in terms of its ability to uncover unmet need for psychosocial services in cancer patients. Correlates of distress, need for services and met and unmet need for services were investigated.Methods: Immediately after cancer treatment (T1) and 2 months later (T2), 302 patients completed the Hopkins Symptom Checklist-25 (HSCL-25) and a single question assessing the need for services. All distressed patients (HSCL-25 >= 39) and non-distressed patients endorsing a need for services were then called (n=99) to assess their need.Results: Thirty-seven percent (T1) and 31% (T2) of patients were distressed and 31% (T1) and 18% (T2) expressed the need for services. Both time points showed higher distress in younger patients and females and lower distress in prostate cancer and patients treated by radiotherapy only. Less need for services was found in prostate cancer (T1), greater need was related to being single (T1) and younger (T2). Distress and need for services were positively related (p<0.001). The HSCL-25 showed modest sensitivity (T1: 0.59, T2: 0.65) and specificity (T1: 0.75, T2: 0.78) as an indicator of need for services. Interviews at T2 revealed that 51% of distressed patients needed no psychosocial services and 25% were already receiving services. At T2, regardless of distress level, 10% of all screened patients reported an unmet need for psychosocial services.Conclusions: Depending on the clinical context, screening might be more efficient if it assessed the unmet need for services rather than distress. More attention should be concentrated on directing patients with meetable unmet needs to available services. Copyright (C) 2011 John Wiley & Sons, Ltd. Show less
