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Objective. (1) Examine QoL of caregivers of patients with brain tumours compared to population norms and other cancer caregiver groups, (2) appraise the content of quantitative QoL outcome measures utilised, and (3) assess to what extent QoL measures used in research align with caregivers’ priorities. Methods. Systematic literature search of studies including caregivers of brain tumour patients using self-completed assessments of QoL. Extracted data from included studies included quantitative QoL outcome data, QoL outcome measures utilised, and the included QoL domains. The impact of brain tumour patient caregiving was assessed by summarising included data comparing brain tumour caregivers to other cancer caregivers and normative population data. QoL measures utilised by the studies and their domains were extracted, coded, and analysed by themes. The rates of investigation by theme were then compared to existing data on caregiver-own preference in relation to QoL. Results. 49 studies, including 57 outcome measures, incorporating a combined 124 QoL domains. Brain tumour caregivers reported lower QoL outcomes than population norms but similar to other cancer caregiver groups. Thematic analysis of QoL domains generated 7 themes: caregiving burden and adaptation, existential and self, family and social support, finances, information needs, physical symptoms and functioning, and psychological symptoms and wellbeing. The most investigated themes were physical and psychological symptoms, the most important for caregivers themselves were family and social support. Conclusions. Caregiving for brain tumour patients is shown to negatively affect QoL, particularly mental health, burden, and social life. Existing QoL research in caregivers of brain tumour patients predominantly utilises generic QoL measures designed for use in patients and draws a medicalised view of QoL priorities. The few studies using caregiver-specific QoL measures demonstrated closer alignment to caregiver preferences such as family and social support.

Additional file 1. Appendices.

An individualized treatment rule (ITR) is a decision rule that aims to improve individual patients health outcomes by recommending optimal treatments according to patients specific information. In observational studies, collected data may contain many variables that are irrelevant for making treatment decisions. Including all available variables in the statistical model for the ITR could yield a loss of efficiency and an unnecessarily complicated treatment rule, which is difficult for physicians to interpret or implement. Thus, a data-driven approach to select important tailoring variables with the aim of improving the estimated decision rules is crucial. While there is a growing body of literature on selecting variables in ITRs with continuous outcomes, relatively few methods exist for discrete outcomes, which pose additional computational challenges even in the absence of variable selection. In this paper, we propose a variable selection method for ITRs with discrete outcomes. We show theoretically and empirically that our approach has the double robustness property, and that it compares favorably with other competing approaches. We illustrate the proposed method on data from a study of an adaptive web-based stress management tool to identify which variables are relevant for tailoring treatment.

Additional file 1. ISAR tool: Original and revised versions

In the management of most chronic conditions characterized by the lack of universally effective treatments, adaptive treatment strategies (ATSs) have been growing in popularity as they offer a more individualized approach, and sequential multiple assignment randomized trials (SMARTs) have gained attention as the most suitable clinical trial design to formalize the study of these strategies. While the number of SMARTs has increased in recent years, their design has remained limited to the frequentist setting, which may not fully or appropriately account for uncertainty in design parameters and hence not yield appropriate sample size recommendations. Specifically, standard frequentist formulae rely on several assumptions that can be easily misspecified. The Bayesian framework offers a straightforward path to alleviate some of these concerns. In this paper, we provide calculations in a Bayesian setting to allow more realistic and robust estimates that account for uncertainty in inputs through the `two priors' approach. Additionally, compared to the standard formulae, this methodology allows us to rely on fewer assumptions, integrate pre-trial knowledge, and switch the focus from the standardized effect size to the minimal detectable difference. The proposed methodology is evaluated in a thorough simulation study and is implemented to estimate the sample size for a full-scale SMART of an Internet-Based Adaptive Stress Management intervention based on a pilot SMART conducted on cardiovascular disease patients from two Canadian provinces., Main article 16 pages, 3 figures, 2 tables. Appendix 11 pages, 10 tables. Submitted to Biometrics

Additional file 1. CONSORT and SPIRIT Checklists.

Additional file 2. Consent forms.

Additional file 3. Sample factsheet.

How have theorists and empirical researchers treated the human tendency to avoid discomforting information?A historical review (1890-2004) of theory literature in communication and information studies, coupled with searches of recent studies on uptake of genetic testing and on coping strategies of cancer patients, was performed.The authors' review of the recent literature included searches of the MEDLINE, PsychInfo, and CINAHL databases between 1992 and summer of 2004 and selective, manual searches of earlier literature. Search strategies included the following subject headings and key words: MeSH headings: Genetic Screening/psychology, Decision Making, Neoplasms/diagnosis/genetics/psychology; CINAHL headings: Genetic Screening, Genetic Counseling, Anxiety, Decision Making, Decision Making/Patient; additional key words: avoidance, worry, monitoring, blunting, cancer. The "Related Articles" function in MEDLINE was used to perform additional "citation pearl" searching.The assumption that individuals actively seek information underlies much of psychological theory and communication practice, as well as most models of the information-seeking process. However, much research has also noted that sometimes people avoid information, if paying attention to it will cause mental discomfort or dissonance. Cancer information in general and genetic screening for cancer in particular are discussed as examples to illustrate this pattern.That some patients avoid knowledge of imminent disease makes avoidance behavior an important area for social and psychological research, particularly with regard to genetic testing.

ObjectivesA high proportion of care stemming from chronic disease or disability in low-income and middle-income countries is provided by informal caregivers. The goal of this study was to determine the level of burden experienced by these caregivers, explore associated factors and assess whether caregivers’ and non-caregivers’ health differed.Design and settingThis cross-sectional study was a secondary analysis of data on caregivers’ burden, health and health risk factors in Ghana, India and the Russian Federation collected as part of the WHO’s Study on global AGEing and adult health (SAGE) Wave 1.ParticipantsCaregivers in Ghana (n=143), India (n=490) and Russia (n=270) completed the measures.Outcome measuresFactors associated (ie, demographics and caregiving profile variables) with burden were explored among caregivers. Then, quality of life (QOL), perceived stress, depression, self-rated health (SRH) and health risk factors were compared between caregivers and matched non-caregivers (1:2).ResultsThe largest caregiving subgroups were spouses and adult children. Caregivers mostly cared for one person and provided financial, social/emotional and/or physical support, but received little support themselves. Burden level ranged from 17.37 to 20.03. Variables associated with burden were mostly country-specific; however, some commonality for wealth, type of care and caregiving duration was noted. Caregivers with a moderate or high level of burden reported lower QOL and higher perceived stress than those experiencing low burden. Caregivers reported lower QOL and SRH than non-caregivers.ConclusionGiven the lack of support received and consequences of the burden endured by caregivers, policy and programme initiatives are needed to ensure that caregivers in low- and middle-income countries can fulfil their role without compromising their own health.