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Distress and quality of life in patient and caregiver dyads facing stem cell transplant: identifying overlap and unique contributions.

ABSTRACT: PURPOSE:Allogeneic hematopoietic stem cell transplantation (Allo-HSCT) is a demanding treatment requiring caregiver support. The pre-transplant period is particularly stressful. How patient and caregiver dyads respond to these stressors can impact post-transplant outcomes. The purpose of this cross-sectional study was to assess pre-transplant patient and caregiver distress, patient quality of life (pQoL), and simultaneously investigate relationship between caregiver distress, patient distress, and patient QoL. METHODS:We measured caregiver anxiety, depressive symptoms, perceived stress, sleep quality, caregiver burden, and pQoL in148 dyads compared to clinical thresholds or population norms. To reduce comparisons, we created a composite distress score from affective measures. Associations within dyads were examined via correlation and path analysis. RESULTS:Most dyads scored above norms for psychological measures. Patient distress was positively associated with caregiver distress. Higher caregiver distress significantly predicted poorer pQoL after accounting for the interdependence of patient and caregiver distress. Specifically, patients' physical functioning was the primary driver of this interrelationship. CONCLUSIONS:Allo-HSCT patients and their caregivers reported elevated distress pre-transplant. Both patient and caregiver distress contributed to pQoL, with patients' physical functioning accounting significantly for caregiver well-being. Supporting the patient-caregiver dyad before transplantation is a priority for supportive services.

SUBMITTER: Sannes TS

PROVIDER: S-EPMC6482095 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

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Distress and quality of life in patient and caregiver dyads facing stem cell transplant: identifying overlap and unique contributions.

Sannes Timothy S TS Simoneau Teresa L TL Mikulich-Gilbertson Susan K SK Natvig Crystal L CL Brewer Benjamin W BW Kilbourn Kristin K Laudenslager Mark L ML

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 20181024 6

<h4>Purpose</h4>Allogeneic hematopoietic stem cell transplantation (Allo-HSCT) is a demanding treatment requiring caregiver support. The pre-transplant period is particularly stressful. How patient and caregiver dyads respond to these stressors can impact post-transplant outcomes. The purpose of this cross-sectional study was to assess pre-transplant patient and caregiver distress, patient quality of life (pQoL), and simultaneously investigate relationship between caregiver distress, patient dis ...[more]

PMID: 30353229

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Project description:BackgroundIntimate partner violence against women (IPV) and violence against children (VAC) are both global epidemics with long-term health consequences. The vast majority of research to date focuses on either IPV or VAC, however the intersections between these types of violence are a growing area of global attention. A significant need exists for empirical research on the overlap of IPV and VAC, especially in contexts with particularly high rates of both types of violence.MethodsThis exploratory study includes secondary analysis of data from a cluster randomized controlled trial in Ugandan schools. Using baseline reports from a random sample of early adolescents attending school and their caregivers, this study uses a probability sample across all eligible schools of adolescent-caregiver dyads (n = 535). We categorized adolescent-caregiver dyads into four groups: those reporting VAC 'only', IPV 'only', both VAC and IPV, or 'no violence'. Two separate multinomial logistic regression models for male and female caregivers explored adolescent and caregiver characteristics associated with the VAC 'only', the IPV 'only', or the both VAC and IPV dyads, each compared to the 'no violence' dyad.ResultsOne third of dyads reported both IPV and VAC and nearly 75% of dyads reported VAC or IPV. Dyads reporting IPV were more likely to also report VAC. Common contributing factors for female caregiver-adolescent dyads with both VAC and IPV include lower SES, less caregiver education, higher caregiver mental distress, more frequent caregiver alcohol use, and caregivers who report less emotional attachment to their intimate partner. Male caregiver-adolescent dyads with both VAC and IPV included caregivers with less emotional attachment to their intimate partner and more attitudes accepting VAC.ConclusionsFindings reveal a significant overlap of IPV and VAC and the importance for violence prevention and response programming to consider coordinated or integrated programming. Unique results for female and male caregivers highlight the importance of a gendered approach to addressing IPV and VAC intersections.Trial registrationThe trial was registered at clinicaltrials.gov, NCT01678846, on September 5, 2012.

Project description:Individual differences in the spatial organization of resting state networks have received increased attention in recent years. Measures of individual-specific spatial organization of brain networks and overlapping network organization have been linked to important behavioral and clinical traits and are therefore potential biomarker targets for personalized psychiatry approaches. To better understand individual-specific spatial brain organization, this paper addressed three key goals. First, we determined whether it is possible to reliably estimate weighted (non-binarized) resting state network maps using data from only a single individual, while also maintaining maximum spatial correspondence across individuals. Second, we determined the degree of spatial overlap between distinct networks, using test-retest and twin data. Third, we systematically tested multiple hypotheses (spatial mixing, temporal switching, and coupling) as candidate explanations for why networks overlap spatially. To estimate weighted network organization, we adopt the Probabilistic Functional Modes (PROFUMO) algorithm, which implements a Bayesian framework with hemodynamic and connectivity priors to supplement optimization for spatial sparsity/independence. Our findings showed that replicable individual-specific estimates of weighted resting state networks can be derived using high quality fMRI data within individual subjects. Network organization estimates using only data from each individual subject closely resembled group-informed network estimates (which was not explicitly modeled in our individual-specific analyses), suggesting that cross-subject correspondence was largely maintained. Furthermore, our results confirmed the presence of spatial overlap in network organization, which was replicable across sessions within individuals and in monozygotic twin pairs. Intriguingly, our findings provide evidence that network overlap is indicative of linear additive coupling. These results suggest that regions of network overlap concurrently process information from all contributing networks, potentially pointing to the role of overlapping network organization in the integration of information across multiple brain systems.

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Distress and quality of life in patient and caregiver dyads facing stem cell transplant: identifying overlap and unique contributions.

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Distress and quality of life in patient and caregiver dyads facing stem cell transplant: identifying overlap and unique contributions.

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