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OBJECTIVES: Patients undergoing autologous hematopoietic stem cell transplant (HCT) are at risk for death and remain understudied relative to those undergoing allogeneic HCT. Cognitive functioning may be a useful indicator of mortality risk. We examined cognition among patients who underwent autologous HCT and its relationship to mortality. METHODS: Participants (N = 51; 11 patients deceased) completed tasks of processing speed, working memory, executive-mediated learning, and visual recall using the computerized CogState battery prior to HCT, 30 days post-autologous HCT, and 100 days post-autologous HCT. RESULTS: Slower processing speed (HR = 3.00) and more errors on an executive-mediated visual learning task (HR = 2.78) prior to HCT were associated with an increased risk of death following HCT. Our sample size limited longitudinal analyses of whether cognitive change predicted survival, however descriptive cognitive data of the deceased versus living patient's performances over time suggested different patterns of performance across groups. CONCLUSIONS: Pre-HCT cognition may have utility as an indicator of mortality risk following autologous HCT. More research is needed to examine whether cognitive changes after HCT could also predict mortality.
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Introduction: Caregiver self-efficacy in providing nutritional support to pediatric hematopoietic stem cell transplantation (HSCT) patients has been little studied despite the increased risk of these children potentially being over- or under-nourished after HSCT, and nutritional status could possibly affect treatment outcomes. The current study aimed to describe caregiver dietary self-efficacy and its associated psychosocial factors and barriers to following dietary recommendations. Methods: Caregivers completed questionnaires pre-HSCT and 30 days, 100 days, and one year post-HSCT. A subset provided a 24-h recall of food intake. Results: Results showed generally high caregiver confidence and low difficulty supporting their child nutritionally. However, lower confidence was associated with higher caregiver depression, anxiety, and stress 30 days post-HSCT. Further, higher difficulty at various time points was correlated with lower income, higher depression and anxiety, stress, and miscarried helping (i.e., negative caregiver-child interactions surrounding eating), as well as child overweight status and failure to meet protein intake guidelines. Nutritional criteria for protein, fiber, added sugar, and saturated fat were met by 65%, 0%, 75%, and 75%, respectively. Caregiver attitudes and child behavior were the most frequently reported barriers to healthy eating. Discussion: Results suggest that directing resources to caregivers struggling emotionally, economically, or transactionally could support pediatric patients undergoing HSCT in maintaining optimal nutritional status.
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Background: Coping styles employed by parents of children with cancer have significant implications for parents' and children's well-being. To supplement the minimal literature in this area, activism (participation in activities that serve to benefit children with cancer as a group) was investigated as a potential coping strategy. Method: Parents (N = 67) of children with cancer completed an online survey that included measures of COPE inventory (COPE), hopefulness (Adult Hope Scale), and depression (Patient Health Questionnaire-9-item). Participants retrospectively reported their engagement in activism to benefit children with cancer and to benefit other causes, including actions that were taken before and after their child's cancer diagnosis. Relations between activism, overall styles of coping, hopefulness, and depression were assessed. Results: Activism was positively correlated with hope and active coping, but not associated with depression. Participants reported a significant increase in childhood-cancer-related activism following their own child's diagnosis, with 100% of parents endorsing engagement in such activism. Postdiagnosis childhood-cancer-related activism uniquely explained 17% of the variance in hopefulness after other forms of activism had been accounted for. Discussion: Childhood-cancer-related activism is a common activity among parents of children with cancer that has significant implications for parental hopefulness. Parents who endorse an active, solution-focused approach to coping with the childhood cancer experience may be more likely than others to engage in activism. Further research is needed to clarify the role of activism in the lives of families of children with cancer.
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Adaptação Psicológica , Neoplasias , Criança , Adulto , Humanos , Estresse Psicológico/etiologia , Estudos Retrospectivos , Pais , Neoplasias/terapiaRESUMO
Introduction: Digital health technology-based interventions have the potential to support cancer caregivers in caregiving responsibilities and in managing their own health and well-being. The objective of this study was to examine the association between caregiving characteristics and different types of digital health technologies used in a national sample of caregivers of patients undergoing hematopoietic cell transplantation (HCT). Methods: We conducted an online, cross-sectional survey of 948 HCT caregivers. Results: Spousal caregivers comprised nearly one-third of respondents (27.1%) with a median age of 59 years (range: 18-80 years), compared with parents (32.9%: 38 years), adult children (28.9%: 38 years), and other (11.1%; e.g. friend, other family member: 36 years). Almost two-thirds (65.4%) of all respondents reported using an app for fitness or step counting and 41.3% reported using a smartwatch. However, spousal caregivers were the least likely group to use mobile apps (0.72; P < 0.005) or smartwatches (OR = 0.46; P < 0.005) compared with parent caregivers in models adjusted for demographics and coping style. Caregiving for six months or greater was associated with the use of fewer apps compared with caregiving for less than six months in adjusted models (OR = 0.80, P < 0.005). Caregivers of patients receiving an allogeneic transplant (i.e. non-self-donor) used more apps on average than caregivers of patients receiving an autologous transplant (i.e. self-donor) in adjusted models (OR = 1.36, P < 0.005). Conclusion: Digital health technologies reflect promising avenues for supporting cancer caregivers. While digital technologies are becoming increasingly pervasive, older caregivers remain an underserved population. Future research should integrate older adult caregivers in the co-design and development activities of technology-driven caregiver support products.
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Purpose: Digital health technology-based interventions have the potential to support caregivers in their caregiving responsibilities and in managing their own health and well-being. Designing digital health technologies to support caregivers of patients undergoing hematopoietic cell transplantation requires evaluating their engagement with these technologies. The objective of this study was to examine the association between caregiving characteristics and different types of digital health technologies used. Methods: We conducted an online cross-sectional, national survey of 948 unpaid family caregivers of patients undergoing hematopoietic cell transplantation. Results: Almost two-thirds (65.4%) of respondents reported using an app for fitness or step counting, while 41.3% reported using a smartwatch. The average number of apps used was 3.3 (range 0-9). In adjusted models, adult children who were caregivers (OR=5.82, p<0.005) and caregivers of another relative (OR=2.51, p<0.005) were significantly more likely to use a fitness tracker than caregivers of a child. Caregiving for six months or greater was associated with use of fewer apps compared with caregiving for less than six months in adjusted models (OR=0.80, p<0.005). Caregivers of patients receiving an allogeneic transplant used more apps on average than caregivers of patients receiving an autologous transplant, in adjusted (OR=1.36, p<0.005) models. Conclusion: Digital health technologies may reflect promising avenues for supporting caregivers of patients undergoing HCT. The rapid insurgence of telehealth, propelled by the current COVID-19 pandemic, emphasizes the need for a better understanding of digital health technology for future study design.
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BACKGROUND: As family caregivers of patients undergoing hematopoietic cell transplantation have multifaceted caregiving responsibilities (such as medical, household, financial) of long duration, they also have multiple physical, social, psychological, and informational needs. OBJECTIVE: This study explored the prevalence of electronic health record patient portal use by family caregivers for managing both their own and their hematopoietic cell transplantation care recipient's health, as well as potential factors associated with portal use. METHODS: An electronic caregiver health survey, first developed via cognitive interviewing methods of hematopoietic cell transplantation caregivers, was distributed nationally (in the United States) by patient advocacy organizations to family caregivers of hematopoietic cell transplantation patients. It was used to assess self-reported caregiver demographics, caregiving characteristics, depression and anxiety with the Patient Health Questionnaire-4, coping with the Brief COPE, and caregiver portal use to manage care recipient's and their own health. RESULTS: We found that 77% of respondents (720/937) accessed electronic health record patient portals for their care recipients, themselves, or both. Multivariate models indicated use of care recipient electronic health record portals by caregivers was more likely with young, White, married, low-income caregivers caring for a parent, residing with the care recipient, and experiencing more caregiver depression. Caregiver use of their own electronic health record portal was more likely with young, White, high-income caregivers caring for a parent and experiencing chronic medical conditions of their own. Partially due to multicollinearity, anxiety and coping did not contribute independently to this model. CONCLUSIONS: Findings from the survey could open avenues for future research into caregiver use of technology for informational support or intervention, including wearables and mobile health. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/4918.
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Cognitive deficits following hematopoietic cell transplantation (HCT) are common and affect post-HCT treatment regimen adherence and quality-of-life. Little is known about effects of age on cognition following HCT. The current study aimed to identify the effects of age on cognition one-year post-HCT, compared to pre-HCT baseline functioning. Participants were 78 autologous and allogeneic transplant recipients who underwent neuropsychological assessments at baseline and one-year post-HCT. Mixed model analyses indicated that no statistically significant main effect of age was observed for any cognitive variable. The Repeatable Battery for the Assessment of Neuropsychological Status (RBANS) Total Index Score and Trail Making Test (parts A and B) showed significant interaction effects between age and transplant type. These findings indicate that older autologous and allogeneic transplant recipients were predicted to perform similarly; however, young allogeneic HCT recipients were predicted to perform substantially below young autologous transplant recipients. Hierarchical regressions indicated that age failed to predict changes in neuropsychological test performance between baseline and one-year post-HCT. These findings indicate that advanced age may not be a risk factor for worse cognitive outcome post-HCT, though younger allogeneic transplant recipients may be at risk for worse cognitive outcomes, relative to younger autologous recipient counterparts. Clinical implications are discussed.
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Transplante de Células-Tronco Hematopoéticas , Condicionamento Pré-Transplante , Cognição , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Testes Neuropsicológicos , Fatores de RiscoRESUMO
This longitudinal study examined feasibility of "Roadmap 1.0," a modular health information application integrated with the electronic medical record, provided to 30 adolescent and young adult (AYA) inpatients 11-24 years of age undergoing hematopoietic stem cell transplantation (HSCT). Feasibility was demonstrated: 70% accessed the application. Utilization was highest the first 2 weeks of hospitalization, with the laboratory results module used most. Users' tension and fatigue were higher than nonusers' at baseline, but not hospital discharge or day 100. Results suggest AYAs utilize health information technology in ways consistent with the HSCT trajectory and Roadmap 1.0 addressed informational and psychological needs.
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Transplante de Células-Tronco Hematopoéticas , Informática Médica , Adolescente , Idoso , Fadiga , Feminino , Humanos , Pacientes Internados , Estudos Longitudinais , Masculino , Adulto JovemRESUMO
PURPOSE: Hematopoietic stem cell transplant (HSCT) recipients are at risk for cognitive decline. Cross-sectional studies show patients' complaints of cognitive decline do not correlate well with concurrently measured objective neuropsychological performance, but rather with emotional variables and health-related quality of life. This longitudinal study investigated whether patient self-report of cognitive status would be concordant with objectively measured neuropsychological performance after accounting for change from their own pre-transplant objective baseline. METHODS: Pre-HSCT and at 30 and 100 days post-HSCT, 46 patients underwent computerized neuropsychological testing (CogState) and completed surveys assessing patient-reported cognitive complaints, emotional symptoms (depression, anxiety), sleep quality, daytime sleepiness, and physical and functional well-being. Correlations were calculated between cognitive complaints and neuropsychological performance (at each time-point and across time-points), as well as all other patient-reported variables. RESULTS: Patient-reported cognitive complaints were largely independent of concurrently assessed objective neuropsychological performance. Uniquely, our longitudinal data demonstrated significant medium to large effect size associations between subjective cognitive complaints post-HSCT with objectively measured change from pre-HSCT in attention, visual learning, and working memory (p < .05-.01). Subjective cognitive complaints post-HSCT were also associated with depression, anxiety, daytime sleepiness and physical well-being (p < .05-.001). CONCLUSIONS: Patients appear better able to assess their cognitive functioning relative to their own baseline and changes across time rather than relative to community norms. Thus, patient complaints of cognitive compromise justify further in-depth neuropsychological, emotional, and functional assessment. Future research into relationships between cognitive complaints and neuropsychological performance should account for changes in performance over time.
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Disfunção Cognitiva/psicologia , Transplante de Células-Tronco Hematopoéticas/psicologia , Testes Neuropsicológicos , Qualidade de Vida/psicologia , Autoavaliação (Psicologia) , Transplantados/psicologia , Adulto , Ansiedade/psicologia , Atenção , Cognição/fisiologia , Estudos Transversais , Feminino , Humanos , Estudos Longitudinais , Masculino , Memória de Curto Prazo/fisiologia , Pessoa de Meia-Idade , Psicometria/métodos , Autorrelato , Inquéritos e QuestionáriosRESUMO
Objectives: Acute graft versus host disease (aGVHD) is a common complication of allogeneic hematopoietic cell transplant (HCT) and is associated with morbidity and mortality. Identifying those at risk for developing aGVHD is crucial for early intervention. The current study assessed whether scores on a brief cognitive screening measure could identify those that develop aGVHD by 100 days post-HCT.Methods: Participants were 37 patients undergoing allogeneic HCT, assessed prior to transplant, and at 30- and 100-days post-HCT. Of those completing all evaluations, patients were divided into those who did (n = 14) and did not (n = 16) develop aGVHD by day 100 post-HCT. At 100 days post-transplant, groups did not differ on relevant demographic factors, disease, conditioning regimen, relatedness of donor, stem cell source, steroid use, total body irradiation use, human leukocyte antigens (HLA) match, or frequency of infection.Results: At 100 days post-HCT, those with aGVHD performed significantly worse on a working memory measure than those without aGvHD. The presence of aGVHD at day 100 increased significantly with every one standard deviation decrease in working memory from baseline to 30 days post-HCT (odds ratio = 3.08; 95% CI: 1.00-9.36). These findings were observed despite a small sample size and statistically controlling for multiple analyses.Conclusions: While this study is exploratory in nature, and has a small sample size, findings suggest that early detection of working memory declines could coincide with, or signal the development of, aGVHD. Potential etiologies are discussed. Implementing early cognitive screening within the first 30 days post-HCT may be useful in identifying patients at risk for aGVHD.
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Disfunção Cognitiva/etiologia , Doença Enxerto-Hospedeiro/complicações , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Testes Neuropsicológicos/normas , Condicionamento Pré-Transplante/efeitos adversos , Adolescente , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto JovemRESUMO
Myeloablative conditioning allogeneic hematopoietic cell transplantation (HCT) puts patients at greater risk for significant cognitive and quality of life decline compared with recipients of reduced-intensity conditioning or autologous HCT. Vorinostat, a histone deacetylase inhibitor, has been shown to have neuroprotective and neurorestorative effects in preclinical models of neurologic diseases. Thus, within the context of a myeloablative conditioning phase II clinical trial of vorinostat combined with tacrolimus and methotrexate for graft-versus-host disease prophylaxis, we conducted an ancillary study to evaluate feasibility of assessing associations between vorinostat and neurocognitive function and quality of life (ClinicalTrials.gov NCT02409134). Nine patients (mean age, 53 years; range, 36 to 66) underwent computerized neuropsychological testing (Cogstate) and completed surveys of mood (Patient Health Questionnaire-9), anxiety (General Anxiety Disorder-7), and quality of life (Functional Assessment of Cancer Therapy-General). Control cohorts from a separate concurrent longitudinal study (19 autologous and 18 allogeneic HCT patients, who matched the vorinostat patients on relevant medical and demographic variables) completed the same test battery. All allogeneic patients received busulfan-based myeloablative conditioning and were transplanted with HLA-matched unrelated donors. The total neurocognitive performance score of vorinostat patients did not change significantly across the study duration (ie, baseline, day 30, day 100, and day 160). Depression, anxiety, and quality of life also did not differ significantly across time. In univariate analyses (analysis of variance), vorinostat-treated patients showed no difference in neurocognitive function or quality of life compared with autologous and allogeneic control subjects. However, when medical variables were accounted for in a linear mixed effects regression model, the total neurocognitive performance of vorinostat-treated patients was comparable with autologous control subjects. Notably, autologous control subjects performed significantly better than allogeneic control subjects (estimate, .64; standard error, .23; P ≤ .01). Moreover, a smaller percentage of vorinostat-treated patients were classified as mildly, moderately, or severely impaired across neurocognitive domains as well as time points compared with both control cohorts. Thus, vorinostat may have neurorestorative or neuroprotective effects in the HCT setting. Accordingly, we recognize the need for a future, full-scale randomized controlled trial to further examine this hypothesis.
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Cognição/efeitos dos fármacos , Transplante de Células-Tronco Hematopoéticas , Fármacos Neuroprotetores/administração & dosagem , Condicionamento Pré-Transplante , Vorinostat/administração & dosagem , Adulto , Idoso , Aloenxertos , Autoenxertos , Feminino , Neoplasias Hematológicas/fisiopatologia , Neoplasias Hematológicas/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Doadores não RelacionadosRESUMO
PURPOSE: We developed BMT Roadmap, a health information technology (HIT) application on a tablet, to address caregivers' unmet needs with patient-specific information from the electronic health record. We conducted a preliminary feasibility study of BMT Roadmap in caregivers of adult and pediatric HSCT patients. The study was registered on ClinicalTrials.gov (NCT03161665; NCT02409121). METHODS: BMT Roadmap was delivered to 39 caregivers of adult and pediatric patients undergoing first-time HSCT at a single study site. We assessed person-reported outcome measures (PROMs) at baseline (hospital admission), discharge, and day 100: usefulness of BMT Roadmap (Perceived Usefulness); activation (Patient Activation Measure-Caregiver version [PAM-C]); mental health ([POMS-2®]: depression, distress, vigor, and fatigue); anxiety (State-Trait Anxiety Inventory); and quality of life (Caregiver Quality of Life Index-Cancer [CQOLC]). To identify determinants of caregiver activation and quality of life, we used linear mixed models. RESULTS: BMT Roadmap was perceived useful and activation increased from baseline to discharge (p = 0.001). Further, burden decreased through discharge (p = 0.007). Overall, a pattern of increasing vigor and decreasing depression, distress, fatigue, and anxiety was apparent from baseline to discharge. However, overall quality of life lowered at discharge after accounting for BMT Roadmap use, depression, anxiety, and fatigue (p = 0.04). CONCLUSIONS: BMT Roadmap was a feasible HIT intervention to implement in HSCT caregivers. BMT Roadmap was associated with increased activation and decreased burden, but quality of life lowered across hospitalization. Findings support the need to further develop caregiver-specific self-directed resources and provide them both inpatient and outpatient across the HSCT trajectory.
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Cuidadores/psicologia , Transplante de Células-Tronco Hematopoéticas/métodos , Informática Médica/métodos , Neoplasias/terapia , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida/psicologia , Condicionamento Pré-Transplante/métodos , Adulto , Idoso , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Adulto JovemRESUMO
PURPOSE: Health information technology (IT) is an ideal medium to improve the delivery of patient-centered care and increase patient engagement. Health IT interventions should be designed with the end user in mind and be specific to the needs of a given population. Hematopoietic cell transplantation (HCT), commonly referred to as blood and marrow transplantation (BMT), is a prime example of a complex medical procedure where patient-caregiver-provider engagement is central to a safe and successful outcome. We have previously reported on the design and development of an HCT-specific health IT tool, BMT Roadmap. METHODS: This study highlights longitudinal quantitative and qualitative patient-reported outcomes (PROs) in 20 adult patients undergoing allogeneic HCT. Patients completed PROs at three time points (baseline, day 30 post-HTC, and day 100 post-HCT) and provided weekly qualitative data through semistructured interviews while using BMT Roadmap. RESULTS: The mean hospital stay was 23.3 days (range, 17 to 37 days), and patients had access to BMT Roadmap for a mean of 21.3 days (range, 15 to 37 days). The total time spent on BMT Roadmap ranged from 0 to 139 minutes per patient, with a mean of 55 minutes (standard deviation, 47.6 minutes). We found that patients readily engaged with the tool and completed qualitative interviews and quantitative PROs. The Patient Activation Measure, a validated measure of patient engagement, increased for patients from baseline to discharge and day 100. Activation was significantly and negatively correlated with depression and anxiety PROs at discharge, suggesting that this may be an important time point for intervention. CONCLUSION: Given the feasibility and promising results reported in this study, next steps include expanding our current health IT platform and implementing a randomized trial to assess the impact of BMT Roadmap on critical PROs.
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Transplante de Células-Tronco Hematopoéticas/métodos , Informática Médica/métodos , Participação do Paciente/psicologia , Medidas de Resultados Relatados pelo Paciente , Adulto , Idoso , Estudos de Avaliação como Assunto , Feminino , Transplante de Células-Tronco Hematopoéticas/psicologia , Humanos , Entrevistas como Assunto , Tempo de Internação , Masculino , Pessoa de Meia-Idade , Assistência Centrada no Paciente , Condicionamento Pré-Transplante , Transplante Homólogo/psicologiaRESUMO
OBJECTIVES: Despite significant numbers of Afghanistan and Iraqi veterans and service members who report symptoms of posttraumatic stress disorder, depression, anxiety, and substance abuse, the majority do not seek help for these problems. A better understanding of the help-seeking process might aid providers and administrators in outreach and provision of services for those who need them. Past research has shown several variables that influence an individual's help-seeking behavior: demographic variables, the nature and severity of a mental health problem, and psychological variables. The three goals of the study were to determine which variables predicted help-seeking intentions from various sources for a psychological problem, identify barriers to help seeking, and identify sources of help sought in the past year. MATERIALS AND METHODS: All Operation Enduring Freedom and Operation Iraqi Freedom veterans and service members registered with a Midwestern VA Healthcare System between 2001 and 2007 received a letter requesting participation in an Internet-based survey. Participants completed nine questionnaires regarding their current physical and psychological health, social support, self-efficacy, public and self-stigma, and barriers to seeking help for a psychological problem. In addition, patterns of help seeking from informal (i.e., partner/spouse, family, friends) and formal (i.e., physician, psychiatrist, or psychologist, either from Veterans Affairs [VA] or the private sector) sources of help were examined. RESULTS: Results from the linear regression model including all formal and informal sources of help indicated a significant model fit with attitudes toward psychotherapy, social support, and current mental health status as significant coefficients. Of note, attitudes toward psychotherapy were a significant coefficient in all help-seeking models; stigma was a significant coefficient with formal and VA sources, and social support was found to be a significant predictor with informal sources. Documentation of a mental health problem on one's record was found to be a significant barrier to help seeking and participants indicated they would most likely seek help in the next year from their partner/spouse, family, or friends versus formal VA or non-VA sources. CONCLUSIONS: This is one of the first studies to examine attitudes toward psychotherapy as contributing to help-seeking intentions of veterans and service members and results provide strong support for inclusion of this variable in future studies in addition to social support and stigma. Limitations of the study are discussed as well as suggestions for future research. It is our hope that findings from this study may inform administrators and providers regarding assessment, outreach, and program development for our country's veterans and service members.
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Comportamento de Busca de Ajuda , Serviços de Saúde Mental/estatística & dados numéricos , Militares/psicologia , Veteranos/psicologia , Adulto , Campanha Afegã de 2001- , Feminino , Humanos , Guerra do Iraque 2003-2011 , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Militares/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Psicometria/instrumentação , Psicometria/métodos , Estigma Social , Apoio Social , Transtornos Relacionados ao Uso de Substâncias/epidemiologia , Transtornos Relacionados ao Uso de Substâncias/etiologia , Transtornos Relacionados ao Uso de Substâncias/psicologia , Inquéritos e Questionários , Veteranos/estatística & dados numéricosRESUMO
In 2015, the National Institutes of Health convened six working groups to address the research needs and best practices for late effects of hematopoietic stem cell transplantation survivors. The Patient-Centered Outcomes Working Group, charged with summarizing the HRQOL evidence base, used a scoping review approach to efficiently survey the large body of literature in adult and pediatric HCT survivors over 1 year after transplantation. The goals of this paper are to (1) summarize the current literature describing patient-centered outcomes in survivors, including the various dimensions of health-related quality of life affected by HCT, and describe interventions tested to improve these outcomes; (2) highlight areas with sufficient evidence allowing for integration into standard practice; (3) address methodological issues that restrict progress in this field; (4) identify major gaps to guide future research; and (5) specify priority research recommendations. Patient-centered outcomes were summarized within physical, psychological, social, and environmental domains, as well as for adherence to treatment, and health behaviors. Interventions to improve outcomes were evaluated for evidence of efficacy, although few interventions have been tested in long-term HCT survivors. Methodologic issues defined included lack of consistency in the selection of patient-centered outcome measures, along with the absence of a standard for timing, frequency, and mode of administration. Recommendations for HCT survivorship care included integration of annual screening of patient-centered outcomes, use of evidence-based practice guidelines, and provision of treatment summaries and survivorship care plans after HCT. Three priority research recommendations included the following: (1) design and test risk-targeted interventions with dose-intensity modulation matching the needs of HCT survivors with priority domains, including sexual dysfunction, fatigue, sleep disruption, nonadherence to medications and recommended health care, health behaviors including physical inactivity and healthy eating, and psychological dysfunction, with particular consideration of novel technologies to reach HCT survivors distant from their transplantation centers; (2) design a consensus-based methodologic framework for outcomes evaluation; and (3) evaluate and compare existing practices for integrating patient-centered outcome screening and interventions across HCT survivorship programs.
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Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Avaliação de Resultados em Cuidados de Saúde/normas , Transplante de Células-Tronco Hematopoéticas/métodos , Transplante de Células-Tronco Hematopoéticas/normas , Humanos , National Institutes of Health (U.S.) , Avaliação de Resultados em Cuidados de Saúde/métodos , Guias de Prática Clínica como Assunto , Qualidade de Vida/psicologia , Projetos de Pesquisa/normas , Relatório de Pesquisa , Sobreviventes/psicologia , Estados UnidosRESUMO
The 2006 National Institutes of Health (NIH) Consensus paper presented recommendations by the Ancillary Therapy and Supportive Care Working Group to support clinical research trials in chronic graft-versus-host disease (GVHD). Topics covered in that inaugural effort included the prevention and management of infections and common complications of chronic GVHD, as well as recommendations for patient education and appropriate follow-up. Given the new literature that has emerged during the past 8 years, we made further organ-specific refinements to these guidelines. Minimum frequencies are suggested for monitoring key parameters relevant to chronic GVHD during systemic immunosuppressive therapy and, thereafter, referral to existing late effects consensus guidelines is advised. Using the framework of the prior consensus, the 2014 NIH recommendations are organized by organ or other relevant systems and graded according to the strength and quality of supporting evidence.
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Antineoplásicos/uso terapêutico , Doença Enxerto-Hospedeiro/terapia , Neoplasias Hematológicas/terapia , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Imunossupressores/uso terapêutico , Transplante de Medula Óssea , Doença Crônica , Consenso , Contraindicações , Gerenciamento Clínico , Doença Enxerto-Hospedeiro/etiologia , Doença Enxerto-Hospedeiro/imunologia , Doença Enxerto-Hospedeiro/patologia , Neoplasias Hematológicas/imunologia , Neoplasias Hematológicas/patologia , Humanos , Fármacos Fotossensibilizantes , Guias de Prática Clínica como Assunto , Ensaios Clínicos Controlados Aleatórios como Assunto , Transplante HomólogoRESUMO
Hematopoietic cell transplantation recipients are at high risk for psychological distress, with reported prevalence rates as high as 40%. Although published guidelines advocate periodic routine screening, it is unclear how screening affects management of psychological symptoms at routine post-HCT outpatient clinic visits. We hypothesized that providers will be more likely to act on patients' psychological symptoms if a screening survey is completed and reviewed before a clinic visit. We used a brief, diagnostically focused Patient Health Questionnaire (PHQ), to assess for depressive disorders, anxiety, substance abuse, and problems in occupational or interpersonal functioning (functional disruption). Adult HCT survivors were randomized to complete the PHQ before meeting with their medical provider (n = 50; experimental group) or afterwards (n = 51; control group). Providers used the experimental group PHQ results at their discretion during the visits. Both providers and patients rated their satisfaction with management of psychological concerns after the visit. The prevalence of clinically significant depression (21%), anxiety (14%), or suicidal ideation (8%) did not differ between the 2 groups. Patients in the experimental group were significantly more likely to have discussion of psychological symptoms than the control group (68% versus 49%, P = .05). Medical providers were significantly more satisfied with the management of psychological issues for the experimental group (P < .001). Patients with depression or anxiety were significantly more likely to prefer the PHQ be used at future visits (P = .02 and P = .001, respectively). These findings suggest an informative yet brief self-report psychological screen can be easily integrated into routine care of hematopoietic cell transplantation survivors, stimulates discussion of psychological symptoms, and improves provider satisfaction with psychological symptom management. Future research will evaluate whether serial prospective administration improves patient outcomes.
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Transplante de Células-Tronco Hematopoéticas/psicologia , Psicometria/métodos , Sobreviventes/psicologia , Condicionamento Pré-Transplante/psicologia , Adolescente , Adulto , Idoso , Assistência Ambulatorial , Estudos Transversais , Depressão/diagnóstico , Detecção Precoce de Câncer , Feminino , Neoplasias Hematológicas/psicologia , Neoplasias Hematológicas/cirurgia , Transplante de Células-Tronco Hematopoéticas/métodos , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Condicionamento Pré-Transplante/métodos , Adulto JovemRESUMO
Back pain is one of the most common causes of disability in industrialized nations. Despite this, the variables that contribute to disability are not well understood and optimal measurement strategies of disability have not yet been determined. The present study sought to comprehensively assess the strongest predictors of physical activity as a proxy for disability. New patients in a chronic pain specialty clinic completed questionnaires to assess the predictors of physical activity and engaged in 5 days of home data collection wearing an accelerometer to assess physical activity in daily life, which is how disability was operationalized in this study. Analysis of repeated measures patient data revealed that, of 3 composite variables each representing a theoretical model, the model representative of operant factors significantly predicted physical activity. Subsequent analyses showed that pain sensitivity, fear avoidance, and solicitous spousal responses account for a significant amount of the variance in physical activity. These findings suggest that external sources of reinforcement or punishment may serve to influence physical behavior beyond that of internal cues such as fear avoidance or pain. Implications for treatment are discussed, including the potential benefits of specifically incorporating the patient's sources of operant reinforcement or punishment into treatment.
Assuntos
Actigrafia/métodos , Dor Crônica/fisiopatologia , Avaliação da Deficiência , Dor Lombar/fisiopatologia , Monitorização Ambulatorial/métodos , Atividade Motora/fisiologia , Adulto , Dor Crônica/diagnóstico , Feminino , Humanos , Dor Lombar/diagnóstico , Masculino , Pessoa de Meia-Idade , Valor Preditivo dos Testes , Adulto JovemRESUMO
PURPOSE: The link between chronic back pain and disability is well established. Despite this, the literature also reflects an inconsistency in methods of assessing disability, as studies interchangeably use self-report measures, clinical tests, and electronic monitoring. The purpose of this study was to conduct a multimethod comparison of disability measures to identify similarities and differences in the constructs measured by each. METHOD: Twenty chronic back pain patients participated in a clinic visit to complete questionnaires and clinical tests, followed by 5 days of wearing a wrist-worn electronic ambulatory monitoring device to measure activity. RESULTS: Multiple regression analyses were conducted to identify the significant predictors of each disability assessment. Results showed that operant variables were predictive of physical activity, cognitive-behavioral variables were predictive of perceived disability, and no variables were predictive of physical ability. DISCUSSION: The results indicate substantial differences in the types of variables that predict disability when measured through 3 different methods. This is suggestive of differences in the constructs measured by each type of disability assessment. The implications for researchers who assess predictors of disability and clinicians who use disability measures in their assessment of patients are that the measures of disability they select should be carefully matched to the proposed purposes. Strong theoretical and practical considerations support using electronic ambulatory monitoring in future research and clinical service.