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BACKGROUND: In the context of cancer research, identifying social isolation and loneliness is a priority given how both exacerbate poor outcomes and lead to increased mortality in oncological populations. The purpose of this systematic review is to identify all quantitative instruments that have been used to assess either social isolation or loneliness in patients previously or currently diagnosed with cancer in the pre-COVID-19 period. METHOD: PubMed (Web), Scopus, CINAHL, and PsycINFO were searched on August 22, 2019. All databases were searched from inception with no filters applied. The search strategies included terms that captured the following concepts: instruments/tools, social isolation or loneliness, and cancer. RESULTS: A total of 289 titles/abstracts were returned. Upon review, 114 titles/abstracts were deemed to be potentially eligible and the full text was retrieved. Of the 114 full texts, 69 articles met inclusion criteria and comprised the final sample. Publications span years 1980 through 2019, with the majority (71%) occurring in the last decade prior to this review, between 2009 and 2019. Average age of the study samples, with few exceptions, was often over 50 years old. Many studies used all-female samples, while only one study used an all-male sample. The most common cancer diagnosis of participants was breast cancer. The most common measure was the UCLA Loneliness Scale, used in 22 studies. Most measures we identified were used only once, and 11 measures were used 2-3 times. When the information was given, response ranges were always Likert-type scales most often ranging from 1-4 or 1-5, and sometimes from 1-10 possible response options. In terms of psychometrics, test-retest reliability and validity were rarely reported; by contrast, internal consistency (Cronbach's alpha) was reported more than half of the time (60.9%). CONCLUSION: When selecting a measure to assess loneliness in cancer populations, the UCLA Loneliness Scale is both psychometrically strong and versatile across patients with different cancers, ages, and racial backgrounds. When selecting a measure to assess social isolation in cancer populations, both the PROMIS-SF V 2.0 social isolation and the Berkman-Syme Network Index are brief and have been used in patients with non-White racial backgrounds.
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BACKGROUND: Elicitation of patients' preferences is an integral part of shared decision-making, the recommended approach for prostate cancer decision-making. Existing decision aids for this population often do not specifically focus on patients' preferences. Healium is a brief interactive web-based decision aid that aims to elicit patients' treatment preferences and is designed for a low health literate population. OBJECTIVE: This study used a randomized controlled trial to evaluate whether Healium, designed to target preference elicitation, is as efficacious as Healing Choices, a comprehensive education and decision tool, in improving outcomes for decision-making and emotional quality of life. METHODS: Patients diagnosed with localized prostate cancer who had not yet made a treatment decision were randomly assigned to the brief Healium intervention or Healing Choices, a decision aid previously developed by our group that serves as a virtual information center on prostate cancer diagnosis and treatment. Assessments were completed at baseline, 6 weeks, and 3 months post baseline, and included decisional outcomes (decisional conflict, satisfaction with decision, and preparation for decision-making), and emotional quality of life (anxiety/tension and depression), along with demographics, comorbidities, and health literacy. RESULTS: A total of 327 individuals consented to participate in the study (171 were randomized to the Healium intervention arm and 156 were randomized to Healing Choices). The majority of the sample was non-Hispanic (272/282, 96%), White (239/314, 76%), married (251/320, 78.4%), and was on average 62.4 (SD 6.9) years old. Within both arms, there was a significant decrease in decisional conflict from baseline to 6 weeks postbaseline (Healium, P≤.001; Healing Choices, P≤.001), and a significant increase in satisfaction with one's decision from 6 weeks to 3 months (Healium, P=.04; Healing Choices, P=.01). Within both arms, anxiety/tension (Healium, P=.23; Healing Choices, P=.27) and depression (Healium, P=.001; Healing Choices, P≤.001) decreased from baseline to 6 weeks, but only in the case of depression was the decrease statistically significant. CONCLUSIONS: Healium, our brief decision aid focusing on treatment preference elicitation, is as successful in reducing decisional conflict as our previously tested comprehensive decision aid, Healing Choices, and has the added benefit of brevity, making it the ideal tool for integration into the physician consultation and electronic medical record. TRIAL REGISTRATION: ClinicalTrials.gov NCT05800483; https://clinicaltrials.gov/study/NCT05800483.
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Tomada de Decisões , Neoplasias da Próstata , Masculino , Humanos , Criança , Técnicas de Apoio para a Decisão , Qualidade de Vida , Neoplasias da Próstata/diagnóstico , Neoplasias da Próstata/terapia , EmoçõesRESUMO
BACKGROUND: Minimal research has leveraged qualitative data methods to gain a better understanding of the experiences and needs of older adults (OAs) and care partners of OAs with and without Alzheimer's Disease (AD) and AD-related dementias (AD/ADRD) during the first surge of the COVID-19 pandemic. In this study, we: 1) quantitatively evaluated the psychosocial health of community-dwelling OAs; 2) quantitatively evaluated the perceived stress of care partners for OAs; 3) qualitatively characterized the experiences and needs of community-dwelling OAs and their care partners; and 4) explored differences in the experiences of care partners of OAs with and without AD/ADRD during the first surge of the COVID-19 pandemic in the New York metropolitan area. METHODS: In this mixed-methods study, telephone interviews were conducted with 26 OAs and 29 care partners (16 of whom cared for OAs with AD/ADRD) from April to July 2020. Quantitative data included: demographics; clinical characteristics (Katz Index of independence in activities of daily living (Katz ADL) and the Lawton-Brody instrumental activities of daily living scale (Lawton-Brody)); and psychosocial health: stress was assessed via the Perceived Stress Scale (PSS), social isolation via the Lubben Social Network Scale (LSNS), loneliness via the DeJong Loneliness Scale (DeJong), and depression and anxiety via the Patient Health Questionnaire-Anxiety and Depression (PHQ). Qualitative questions focused on uncovering the experiences and needs of OAs and their care partners. RESULTS: OAs (N = 26) were mostly female (57.7%), and White (76.9%), average age of 81.42 years. While OAs were independent (M = 5.60, Katz ADL) and highly functional (M = 6.92, Lawton-Brody), and expressed low levels of loneliness, stress, depression and anxiety (M = 1.95 on DeJong; M = 12.67 on PSS; M = 1.05 on PHQ depression; and M = 1.09 on PHQ anxiety), open-ended questions elicited themes of fear and worry. Care partners (N = 29) were mostly female (75.9%), White (72.4%), and married (72.4%), and reported moderate stress (M = 16.52 on the PSS), as well as a psychological impact of the pandemic. CONCLUSIONS: Early in the pandemic, OAs reported minimal stress and loneliness; this may have been related to their reports of frequent interaction with family, even if only virtually. By contrast, care partners were moderately stressed and worried, potentially more than usual due to the additional challenges they face when trying to meet their loved ones' needs during a pandemic.
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Doença de Alzheimer , COVID-19 , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , Doença de Alzheimer/psicologia , COVID-19/epidemiologia , Cuidadores , Feminino , Humanos , Solidão/psicologia , Masculino , PandemiasRESUMO
BACKGROUND: Many prostate cancer (PC) survivors experience disease and treatment-related symptomatology in both the physical and psychosocial domains. Although the benefits and barriers to using web-based resources for cancer patients are well-documented, less research has focused on the personal characteristics important for efficient tailoring and targeting of information that are associated with usage. OBJECTIVE: We used the Cognitive-Social Health Information Processing (C-SHIP) framework to guide our exploration of personal characteristics associated with use of PROGRESS, an informational PC survivorship website that addresses physical, emotional, interpersonal, and practical concerns relevant for PC survivors. METHODS: PC survivors (N=217) were randomized to the intervention arm (PROGRESS) of a randomized controlled trial. Of those randomized to the intervention arm, 84 used PROGRESS, and 133 did not use PROGRESS. Multivariable analyses evaluated demographic and psychosocial characteristics (eg, style of coping, health literacy, self-efficacy, affective states of depression, anxiety, and fatigue) associated with website use. RESULTS: A larger proportion of non-Hispanic White (68/160, 42.5%), compared with non-Hispanic Black (9/40, 23%), participants used PROGRESS (P<.001). Further, PROGRESS users were older in age (P<.001), had a monitoring style of coping (P=.01), and were less depressed (P=.004), anxious (P=.02), and fatigued (P<.001) than nonusers. Education, income, health literacy, blunting style of coping, self-efficacy, and treatment type (radiation therapy or surgery) were not significantly related to use. On multivariable analyses, race (OR 0.28, P<.001), age (OR 1.05, P<.001), monitoring style of coping (OR 1.27, P=.02), and overall mood (OR 0.98, P<.001) remained significant. CONCLUSIONS: A combination of monitoring and low levels of negative affect were associated with website use. Additionally, users were older, non-Hispanic White survivors. To ensure that important survivorship-relevant information reaches users, future efforts need to focus on enhancing patient engagement. TRIAL REGISTRATION: ClinicalTrials.gov NCT02224482; https://clinicaltrials.gov/ct2/show/NCT02224482.
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Sobreviventes de Câncer , Neoplasias da Próstata , Demografia , Humanos , Masculino , Próstata , Neoplasias da Próstata/terapia , SobrevivênciaRESUMO
Telehealth has emerged as an evolving care management strategy that is playing an increasingly vital role, particularly with the onset of the coronavirus disease 2019 pandemic. A meta-analysis of 20 randomized controlled trials was conducted to test the effectiveness of home telemonitoring (HTM) in patients with type 2 diabetes in reducing A1C, blood pressure, and BMI over a median 180-day study duration. HTM was associated with a significant reduction in A1C by 0.42% (P = 0.0084). Although we found statistically significant changes in both systolic and diastolic blood pressure (-0.10 mmHg [P = 0.0041] and -0.07 mmHg [P = 0.044], respectively), we regard this as clinically nonsignificant in the context of HTM. Comparisons across different methods of transmitting vital signs suggest that patients logging into systems with moderate interaction with the technology platform had significantly higher reductions in A1C than those using fully automatic transmission methods or fully manual uploading methods. A1C did not vary significantly by study duration (from 84 days to 5 years). HTM has the potential to provide patients and their providers with timely, up-to-date information while simultaneously improving A1C.
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OBJECTIVES: Prostate cancer (PCa) survivors report poor physical functioning alongside negative psychological outcomes as they cope with treatment side effects and practical concerns after treatment completion. This study evaluated PROGRESS, a web-based intervention designed to improve adaptive coping among PCa survivors. METHODS: Localized PCa patients (N = 431) within one year of treatment completion were randomized to receive educational booklets or PROGRESS + educational booklets. Surveys completed at baseline, 1-, 3-, and 6-months assessed patient characteristics; functional quality of life and coping (primary outcomes); and psychosocial outcomes (e.g., self-efficacy, marital communication; secondary outcomes). Intent-to-treat and as-treated analyses were completed to assess change in outcomes from baseline to 6 months using linear mixed effects regression models. RESULTS: In the intent-to-treat analyses, participants randomized to the intervention group had improved diversion coping (i.e., healthy redirection of worrying thoughts about their cancer), but more difficulties in marital communication (ps < 0.05). However, PROGRESS usage was low among those randomized to the intervention group (38.7%). The as-treated analyses found PROGRESS users reported fewer practical concerns but had worse positive coping compared to PROGRESS non-users (ps < 0.05). CONCLUSIONS: The findings suggest PROGRESS may improve certain aspects of adaptive coping among PCa survivors that use the website, but does not adequately address the remaining coping and psychosocial domains. Additional research is needed to better understand the gaps in intervention delivery contributing to low engagement and poor improvement across all domains of functional quality of life and adaptive coping.
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Sobreviventes de Câncer , Intervenção Baseada em Internet , Neoplasias da Próstata , Adaptação Psicológica , Humanos , Masculino , Neoplasias da Próstata/terapia , Qualidade de Vida , SobreviventesRESUMO
BACKGROUND: Age has been implicated as the main risk factor for COVID-19-related mortality. Our objective was to utilize administrative data to build an explanatory model accounting for geriatrics-focused indicators to predict mortality in hospitalized older adults with COVID-19. METHODS: Retrospective cohort study of adults age 65 and older (N = 4783) hospitalized with COVID-19 in the greater New York metropolitan area between 3/1/20-4/20/20. Data included patient demographics and clinical presentation. Stepwise logistic regression with Akaike Information Criterion minimization was used. RESULTS: The average age was 77.4 (SD = 8.4), 55.9% were male, 20.3% were African American, and 15.0% were Hispanic. In multivariable analysis, male sex (adjusted odds ration (adjOR) = 1.06, 95% CI:1.03-1.09); Asian race (adjOR = 1.08, CI:1.03-1.13); history of chronic kidney disease (adjOR = 1.05, CI:1.01-1.09) and interstitial lung disease (adjOR = 1.35, CI:1.28-1.42); low or normal body mass index (adjOR:1.03, CI:1.00-1.07); higher comorbidity index (adjOR = 1.01, CI:1.01-1.02); admission from a facility (adjOR = 1.14, CI:1.09-1.20); and mechanical ventilation (adjOR = 1.52, CI:1.43-1.62) were associated with mortality. While age was not an independent predictor of mortality, increasing age (centered at 65) interacted with hypertension (adjOR = 1.02, CI:0.98-1.07, reducing by a factor of 0.96 every 10 years); early Do-Not-Resuscitate (DNR, life-sustaining treatment preferences) (adjOR = 1.38, CI:1.22-1.57, reducing by a factor of 0.92 every 10 years); and severe illness on admission (at 65, adjOR = 1.47, CI:1.40-1.54, reducing by a factor of 0.96 every 10 years). CONCLUSION: Our findings highlight that residence prior to admission, early DNR, and acute illness severity are important predictors of mortality in hospitalized older adults with COVID-19. Readily available administrative geriatrics-focused indicators that go beyond age can be utilized when considering prognosis.
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COVID-19 , Geriatria , Idoso , Comorbidade , Mortalidade Hospitalar , Hospitalização , Humanos , Masculino , Estudos Retrospectivos , Fatores de Risco , SARS-CoV-2RESUMO
OBJECTIVE: Research on the relationship between post-traumatic stress disorder (PTSD)/post-traumatic stress symptoms (PTSS) and post-traumatic growth (PTG) in cancer patients and survivors is increasing. METHODS: We conducted a systematic review and meta-analysis of 51 studies that assessed the relationship between PTSD/PTSS and PTG, in cancer patients/survivors. Five databases were searched through 29 April 2019. The purpose of this manuscript is to report a summary of this literature, the aggregate effect size of the relationship between PTSD and PTG, and the examination of potential moderators that may impact the relationship between PTSD and PTG. RESULTS: The aggregate weighted effect size for the association between PTSD/PTSS and PTG was small, r = .08, but significantly different from zero. We examined whether time since diagnosis, stage of cancer, type of measure used to assess PTSD/PTSS, or type of measure used to assess PTG explained the significant heterogeneity among the individual effect sizes. The relationship was significantly stronger for the small subset of studies that included only stage 4 patients compared with those that included only non-stage 4 patients. Additionally, the strongest relationship was for those studies that used the Impact of Events Scale-Revised to assess PTSD. CONCLUSIONS: The relationship between PTSD/PTSD and PTG is modestly positive and robust. There is evidence that the threat of advanced cancer is more strongly associated with growth, but none supporting that more time since cancer diagnosis allows survivors the opportunity to positively reinterpret and find meaning in the traumatic aspects of the disease resulting in more growth.
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Sobreviventes de Câncer/psicologia , Neoplasias/psicologia , Crescimento Psicológico Pós-Traumático , Transtornos de Estresse Pós-Traumáticos/psicologia , HumanosRESUMO
BACKGROUND: Patients with advanced cancer have high rates of psychological distress, including depression, anxiety, and spiritual despair. This study examined the effectiveness of individual meaning-centered psychotherapy (IMCP) in comparison with supportive psychotherapy (SP) and enhanced usual care (EUC) in improving spiritual well-being and quality of life and reducing psychological distress in patients with advanced cancer. METHODS: Patients (n = 321) were randomly assigned to IMCP (n = 109), SP (n = 108), or EUC (n = 104). Assessments were conducted at 4 time points: before intervention, midtreatment (4 weeks), 8 weeks after treatment, and 16 weeks after treatment. RESULTS: Significant treatment effects (small to medium in magnitude) were observed for IMCP, in comparison with EUC, for 5 of 7 outcome variables (quality of life, sense of meaning, spiritual well-being, anxiety, and desire for hastened death), with Cohen's d ranging from 0.1 to 0.34; no significant improvement was observed for patients receiving SP (d < 0.15 and P > .05 for all variables). The effect of IMCP was significantly greater than the effect of SP for quality of life and sense of meaning (d = 0.19) but not for the remaining study variables. CONCLUSIONS: This study provides further support for the efficacy of IMCP as a treatment for psychological and existential/spiritual distress in patients with advanced cancer. Significant treatment effects (small to moderate effect sizes) were observed in comparison with usual care, and somewhat more modest differences in improvement (small effect sizes) were observed in comparison with SP. Thus, the benefits of meaning-centered psychotherapy appear to be unique to the intervention and highlight the importance of addressing existential issues with patients approaching the end of life. Cancer 2018. © 2018 American Cancer Society.
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Depressão/terapia , Existencialismo , Neoplasias/terapia , Psicoterapia Centrada na Pessoa , Adulto , Idoso , Idoso de 80 Anos ou mais , Depressão/complicações , Depressão/patologia , Depressão/psicologia , Emoções/fisiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , Neoplasias/patologia , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Qualidade de Vida , EspiritualidadeRESUMO
OBJECTIVE: The burden experienced by informal caregivers (ICs) of patients with advanced cancer is well documented. ICs are at risk for anxiety and depression, as well as existential concerns that arise when a loved one is facing a terminal illness. Few psychosocial interventions focus on existential concerns of ICs. However, a growing body of literature indicates that finding meaning in the experience of being an IC for a person with cancer has the potential to buffer against burden. The purpose of this study was to collect preliminary descriptive data regarding caregiver burden, meaning, and psychosocial service use to inform the adaptation of a meaning-centered intervention for ICs. METHOD: Twenty-five caregivers and 32 patients completed brief, anonymous questionnaires that asked about their role as a caregiver or their perception of their loved one as a caregiver, caregiver burden, and psychosocial service use. RESULTS: Caregivers and patients identified anxiety and depression as top correlates of burden experienced by caregivers, whereas guilt, issues with role/sense of identity, and self-care were additional areas of concern. The majority of caregivers were not receiving psychosocial services, although they almost unanimously reported desiring services. A greater proportion of patients than caregivers believed that an intervention designed to enhance meaning would ameliorate burden, but, nevertheless, close to three quarters of caregivers reported interest in participating in such an intervention. SIGNIFICANCE OF RESULTS: These study findings provide further support for, at a minimum, engaging ICs of persons with advanced cancer in interventions that address existential issues, mental health, self-care, and service use. Such interventions are likely to improve the quality of life of both patients with cancer and their ICs.
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Cuidadores/psicologia , Aconselhamento/estatística & dados numéricos , Neoplasias/psicologia , Apoio Social , Estresse Psicológico/psicologia , Atividades Cotidianas , Ansiedade/etiologia , Ansiedade/psicologia , Ansiedade/terapia , Institutos de Câncer , Depressão/etiologia , Depressão/psicologia , Depressão/terapia , Relações Familiares , Humanos , Pacientes Ambulatoriais , Estresse Psicológico/etiologia , Estresse Psicológico/terapia , Inquéritos e QuestionáriosRESUMO
PURPOSE: Oropharyngeal dysphagia (OD) affects nearly 90% of hospitalized persons with dementia. Yet, little is known about the care partner experience. The purpose of our study was to describe the experience of care partners related to OD management in patients with dementia as they transition from the hospital to the community setting. METHOD: Using a mixed-methods approach, we conducted telephone interviews with care partners of recently hospitalized older adults with dementia and OD. Interviews consisted of quantitative/qualitative assessments: communication with health care team, perception about risks/benefits of dysphagia diet, and informational needs. Descriptive statistics were used for quantitative data. For the qualitative data, transcripts were independently coded by research team and categorized into themes. RESULTS: Of the care partners interviewed (N = 24), mean age was 63.5 (SD = 14.9), 62.5% were female, and 66.7% were White. Nearly 60% of patients had severe dementia, and 66.7% required feeding assistance. Care partners (n = 18) reported moderate burden of 14.11 (SD = 10.03). Most care partners (83.3%) first learned about OD during hospitalization. Only 29.2% of care partners reported that they discussed OD with a physician. Care partner perception of dysphagia diet risks/benefits ranged widely: 33.3% thought dysphagia diets would promote a more enjoyable existence. Over half (54.2%) of care partners indicated no choice regarding dysphagia diets was presented to them. Two thirds (n = 16) of care partners were nonadherent to diet recommendations; the top reason (n = 13%) was diet refusal by patients. Although 83.3% of care partners wanted additional information regarding dysphagia management, only 20.8% sought any. CONCLUSIONS: Our findings highlight that care partners of persons with dementia face significant OD-related communication and informational gaps, which may lead to elevated burden. Future studies are needed to address unmet OD-related care partner needs.
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Transtornos de Deglutição , Demência , Humanos , Feminino , Idoso , Pessoa de Meia-Idade , Masculino , Transtornos de Deglutição/diagnóstico , Transtornos de Deglutição/etiologia , Transtornos de Deglutição/terapia , Cuidadores , Hospitalização , Demência/complicações , Demência/terapia , DietaRESUMO
We conducted a nationwide, randomized controlled trial to evaluate the impact of Healing Choices, a novel interactive education and treatment decision program rooted in the self-regulation theory framework, on decisional conflict and psychological distress at 2-month post-intervention in women with early-stage breast cancer. Patients were randomized to receive the National Cancer Institute's standard print material (control) or standard print material plus Healing Choices (the intervention). The final sample at 2-month post-intervention consisted of N = 388 participants (intervention: n = 197; control: n = 191). There were no significant differences in decisional conflict or its subscales; however, psychological distress was higher in the intervention group (16.09 ± 10.25) than in the control group (14.37 ± 8.73) at follow-up, B = 1.88, 95% CI [-0.03, 3.80], t(383) = 1.94, p = .05. Upon further examination, we found that engagement with the intervention was low-41%-prompting as-treated analyses, which showed no difference in distress between users and nonusers and a positive impact of Healing Choices on decisional conflict: decisional support subscale: users (35.36 ± 15.50) versus nonusers (39.67 ± 15.99), B = -4.31 (s.e. = 2.09), p = .04. Multiple recommendations for moving ahead stem from this work: (i) intent-to-treat analyses appeared to cause distress, cautioning against interventions that may lead to information overload; (ii) engagement with the intervention is low and future work needs to focus on increasing engagement and monitoring it throughout the study; and (iii) in studies with low engagement, as-treated analyses are critical.
Healing Choices is a multimedia software program that provides information and decision-making support for women with early-stage breast cancer. We present the results of a randomized controlled trial that evaluated the impact of Healing Choices, compared with standard of care (National Cancer Institute's standard print material), on decisional conflict and psychological distress. In total, 388 participants (197 in the intervention and 191 in the control group) completed the 2-month post-intervention assessment. Results indicated that Healing Choices did not help with treatment decision-making but was associated with higher levels of psychological distress. Use among women assigned to Healing Choices, however, was low, at 41%. When comparing women who used the program with those who did not, we found that the effect of elevated distress disappeared, while program users felt more support than nonusers during the decision-making process. In the future, interventions such as Healing Choices should be regulated so as not to cause distress via information overload, a focus on monitoring and increasing engagement with the intervention is necessary, and, when engagement is low, as-treated analyses are critical to explore the efficacy of the intervention.
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Neoplasias da Mama , Angústia Psicológica , Humanos , Feminino , Neoplasias da Mama/terapia , Tomada de Decisões , Técnicas de Apoio para a Decisão , MultimídiaRESUMO
BACKGROUND: Bladder cancer survivors and their caregivers face profound practical (eg, use of stoma appliances and care for urinary diversion methods) and psychosocial (eg, depression and anxiety) challenges after surgical treatment with cystectomy. OBJECTIVE: To improve the health-related quality of life and postsurgical outcomes of both bladder cancer survivors and their caregivers, the team, in collaboration with Sourcetop, Inc (software design) and Dappersmith (graphic design), developed the Cancer Resource and Information Support (CRIS) software. The purpose of this manuscript is to report on the development and usability testing of the CRIS software. METHODS: The development of the CRIS software was guided by the Obesity-Related Behavioral Intervention Trials (ORBIT) model for developing behavioral treatments for chronic diseases. The ORBIT model is unique in that it proposes a flexible and progressive process with prespecific clinically significant milestones for forward movement and returns to earlier stages for refinement, and it facilitates communication among diverse groups by using terminology from the drug development model. This paper focuses on 2 phases of the ORBIT model: phase IA: define and IB: refine. During phase IA, the study team developed solutions for the stated clinical problem-adjustment to life post cystectomy-by reviewing the literature and collecting feedback from clinicians, professional organizations, bladder cancer survivors, and their caregivers. During Phase IB, the study team focused on tailoring content in the CRIS software to the user as well as usability testing with 7 participants. RESULTS: The finished product is CRIS, a web-based software for survivors of bladder cancer and their caregivers to serve as a health management and lifestyle resource after surgery. Overarching themes from phase IA (participant feedback) included how to use new medical equipment, tips and tricks for easier living with new medical equipment, questions about health maintenance, and questions about lifestyle modifications. To accommodate our target population, we also incorporated recommendations from the Americans with Disabilities Act for website design, such as large text size, large paragraph spacing, highly contrasting text and background colors, use of headings and labels to describe the purpose of the content, portrait orientation without the need for horizontal scrolling, multiple ways to access a web page within a set of pages, ability to navigate web pages in sequential order, and in-text links that are descriptive. Usability participants evaluated CRIS very positively, indicating that it was easy to use, the functions were well-integrated, and if available, they would use CRIS frequently. CONCLUSIONS: CRIS, developed over the course of 18 months by integrating feedback from experts, literature reviews, and usability testing, is the first web-based software developed for bladder cancer survivors and their caregivers to help them adjust to life following cystectomy. The efficacy of CRIS in improving patients' and caregivers' quality of life is currently being evaluated in a randomized controlled trial.
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OBJECTIVES: Dysphagia is prevalent in older adults with dementia, particularly in the acute care setting. The objective of this study was to use an innovative approach to extract a more representative sample of patients with dysphagia from the electronic health record (EHR) to determine patient characteristics, hospital practices, and outcomes associated with dysphagia in hospitalized persons with dementia. DESIGN: A retrospective study of hospitalized adults (aged ≥65 years) with dementia was conducted in 7 hospitals across the greater New York metropolitan area. SETTING AND PARTICIPANTS: Data were obtained from the inpatient EHR with the following inclusion criteria: age ≥65 years; admitted to one of 7 health system hospitals between January 1, 2019, and December 31, 2019; and documented past medical diagnosis of dementia (based on International Classification of Diseases, Ninth Revision). METHODS: A diagnosis of dysphagia was defined as nurse documentation of a positive bedside swallow screening, nurse documentation of "difficulty swallowing" as reason for not performing bedside swallow screening, and physician documentation of a dysphagia diagnosis. RESULTS: Of adults with dementia (N = 8637), the average age was 84.5 years, 61.6% were female, and 18.1% were Black and 9.3% Hispanic. Dysphagia was identified in 41.8% (n = 3610). In multivariable models, dysphagia was associated with invasive mechanical ventilation [odds ratio (OR) 4.53, 95% CI 3.55-5.78], delirium (OR 1.53, 95% CI 1.40-1.68), increased length of stay (B = 3.29, 95% CI 2.98-3.60), and mortality (OR 4.44, 95% CI 3.54-5.55). CONCLUSIONS AND IMPLICATIONS: Given its high prevalence, underrecognition, and associated poor outcomes, improving large-scale dysphagia identification can impact clinical care and advance research in hospitalized persons with dementia.
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Transtornos de Deglutição , Demência , Idoso , Idoso de 80 Anos ou mais , Transtornos de Deglutição/diagnóstico , Demência/complicações , Feminino , Hospitalização , Humanos , Pacientes Internados , Masculino , Estudos RetrospectivosRESUMO
The role of early Do Not Resuscitate (DNR) in hospitalized older adults (OAs) with SARS-CoV-2 infection is unknown. The objective of the study was to identify characteristics and outcomes associated with early DNR in hospitalized OAs with SARS-CoV-2. We conducted a retrospective chart review of older adults (65+) hospitalized with COVID-19 in New York, USA, between March 1, 2020, and April 20, 2020. Patient characteristics and hospital outcomes were collected. Early DNR (within 24 hours of admission) was compared to non-early DNR (late DNR, after 24 hours of admission, or no DNR). Outcomes included hospital morbidity and mortality. Of 4961 patients, early DNR prevalence was 5.7% (n = 283). Compared to non-early DNR, the early DNR group was older (85.0 vs 76.8, P < .001), women (51.2% vs 43.6%, P = .012), with higher comorbidity index (3.88 vs 3.36, P < .001), facility-based (49.1% vs 19.1%, P < .001), with dementia (13.3% vs 4.6%, P < .001), and severely ill on presentation (57.9% vs 32.3%, P < .001). In multivariable analyses, the early DNR group had higher mortality risk (OR: 2.94, 95% CI: 2.10-4.11), less hospital delirium (OR: 0.55, 95% CI: 0.40-.77), lower use of invasive mechanical ventilation (IMV, OR: 0.37, 95% CI: .21-.67), and shorter length of stay (LOS, 4.8 vs 10.3 days, P < .001), compared to non-early DNR. Regarding early vs late DNR, while there was no difference in mortality (OR: 1.12, 95% CI: 0.85-1.62), the early DNR group experienced less delirium (OR: 0.55, 95% CI: .40-.75), IMV (OR: 0.53, 95% CI: 0.29-.96), and shorter LOS (4.82 vs 10.63 days, OR: 0.35, 95% CI: 0.30-.41). In conclusion, early DNR prevalence in hospitalized OAs with COVID-19 was low, and compared to non-early DNR is associated with higher mortality but lower morbidity.
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COVID-19 , Delírio , Humanos , Feminino , Idoso , Ordens quanto à Conduta (Ética Médica) , Pandemias , COVID-19/epidemiologia , Estudos Retrospectivos , SARS-CoV-2 , Delírio/epidemiologia , Mortalidade HospitalarRESUMO
Background: COVID-19 has been associated with an increased risk of incident dementia (post-COVID dementia). Establishing additional risk markers may help identify at-risk individuals and guide clinical decision-making. Methods: We investigated pre-COVID psychotropic medication use (exposure) and 1-year incidence of dementia (outcome) in 1,755 patients (≥65 years) hospitalized with COVID-19. Logistic regression models were used to examine the association, adjusting for demographic and clinical variables. For further confirmation, we applied the Least Absolute Shrinkage and Selection Operator (LASSO) regression and a machine learning (Random Forest) algorithm. Results: One-year incidence rate of post-COVID dementia was 12.7% (N = 223). Pre-COVID psychotropic medications (OR = 2.7, 95% CI: 1.8-4.0, P < 0.001) and delirium (OR = 3.0, 95% CI: 1.9-4.6, P < 0.001) were significantly associated with greater 1-year incidence of post-COVID dementia. The association between psychotropic medications and incident dementia remained robust when the analysis was restricted to the 423 patients with at least one documented neurological or psychiatric diagnosis at the time of COVID-19 admission (OR = 3.09, 95% CI: 1.5-6.6, P = 0.002). Across different drug classes, antipsychotics (OR = 2.8, 95% CI: 1.7-4.4, P < 0.001) and mood stabilizers/anticonvulsants (OR = 2.4, 95% CI: 1.39-4.02, P = 0.001) displayed the greatest association with post-COVID dementia. The association of psychotropic medication with dementia was further confirmed with Random Forest and LASSO analysis. Conclusion: Confirming prior studies we observed a high dementia incidence in older patients after COVID-19 hospitalization. Pre-COVID psychotropic medications were associated with higher risk of incident dementia. Psychotropic medications may be risk markers that signify neuropsychiatric symptoms during prodromal dementia, and not mutually exclusive, contribute to post-COVID dementia.
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BACKGROUND: Literature indicates an atypical presentation of COVID-19 among older adults (OAs). Our purpose is to identify the frequency of atypical presentation and compare demographic and clinical factors, and short-term outcomes, between typical versus atypical presentations in OAs hospitalized with COVID-19 during the first surge of the pandemic. METHODS: Data from the inpatient electronic health record were extracted for patients aged 65 and older, admitted to our health systems' hospitals with COVID-19 between March 1 and April 20, 2020. Presentation as reported by the OA or his/her representative is documented by the admitting professional and includes both symptoms and signs. Natural language processing was used to code the presence/absence of each symptom or sign. Typical presentation was defined as words indicating fever, cough, or shortness of breath; atypical presentation was defined as words indicating functional decline or altered mental status. RESULTS: Of 4 961 unique OAs, atypical presentation characterized by functional decline or altered mental status was present in 24.9% and 11.3%, respectively. Atypical presentation was associated with older age, female gender, Black race, non-Hispanic ethnicity, higher comorbidity index, and the presence of dementia and diabetes mellitus. Those who presented typically were 1.39 times more likely than those who presented atypically to receive intensive care unit-level care. Hospital outcomes of mortality, length of stay, and 30-day readmission were similar between OAs with typical versus atypical presentations. CONCLUSION: Although atypical presentation in OAs is not associated with the same need for acute intervention as respiratory distress, it must not be dismissed.
Assuntos
COVID-19 , Pandemias , Idoso , COVID-19/epidemiologia , Feminino , Hospitalização , Hospitais , Humanos , Masculino , SARS-CoV-2RESUMO
OBJECTIVE: Posttraumatic growth and benefit finding describe the potential for positive changes resulting from traumatic experiences, including cancer. In oncology, these constructs are increasingly examined concurrently using the Posttraumatic Growth Inventory (PTGI) and the Benefit Finding Scale (BFS). However, distinctions between these constructs and their corresponding scales are not altogether clear, and the burden of administering 2 lengthy questionnaires is evident, particularly for patients at end-of-life. METHOD: Baseline data from 209 participants enrolled in a randomized controlled trial evaluating the efficacy of a psychosocial intervention were analyzed. We assessed the structure and covariance of all PTGI and BFS items using item response theory to determine the extent to which these measures overlap and the potential value of their concurrent administration in patients with advanced cancer. RESULTS: Despite conceptual differences in posttraumatic growth and benefit finding, results indicated that these measures address the same underlying construct. We subsequently analyzed 3 abbreviated scales (7, 11, and 16 items) that combine items from both scales to identify an optimal briefer combined scale. Results supported all 3 versions, with the 7- and 16-item measures appearing to have the best balance of content and concurrent validity and the 11-item version optimizing information gained with brevity. CONCLUSIONS: These findings indicate that concurrent administration of the PTGI and BFS may be unnecessary given the high degree of overlap between these 2 measures and that a brief subset of items may adequately evaluate positive change among patients with advanced cancer while reducing participant burden. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
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Neoplasias , Crescimento Psicológico Pós-Traumático , Humanos , Neoplasias/complicações , Neoplasias/psicologia , Psicometria , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
Objective: This study examined whether patients who were randomly assigned to their preferred therapy arm had stronger engagement with their treatment than those who were randomly assigned to a non-preferred therapy arm. Method: Data were drawn from a RCT comparing Individual Meaning-Centered Psychotherapy (IMCP), with Individual Supportive Psychotherapy (ISP), in patients with advanced cancer. Treatment engagement was operationalized as patients' perceptions of the therapeutic alliance with their therapist and therapy sessions attended. Two 2 by 2 Analysis of Variance (ANOVA) models were used, with treatment preference (IMCP vs. ISP) and treatment assignment (IMCP vs. ISP) as the independent variables and working alliance and number of sessions attended as outcome variables. Results: Patients who preferred and were assigned to IMCP reported a significantly stronger alliance than those who preferred IMCP but were assigned to ISP. Conclusions: The findings from this study have broader implications for research on psychotherapy beyond the appeal of IMCP in advanced cancer patients. Patients who prefer a novel psychotherapy that they cannot engage in elsewhere, but receive the standard treatment may experience weaker alliance than patients who prefer the standard but receive the novel therapy. Trial registration: Clinicaltrial.gov ID: NCT01323309.
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CONTEXT: Few studies have described the characteristics and palliative care needs in hospitalized patients with coronavirus disease 2019 (COVID-19). OBJECTIVES: Describing characteristics, consultation demands, patients' needs, and outcomes of hospitalized patients with COVID-19 who received a palliative care evaluation. METHODS: Retrospective chart review of patients (aged 18+ years) with COVID-19 admitted to an academic quaternary center and seen by the geriatrics and palliative medicine team from March 1st to May 11th, 2020. Socio-demographics, operational metrics, severity of illness, goals of care-advanced care planning documentation, and outcomes were analyzed. RESULTS: Three hundred seventy-six (17.6%) out of 2138 COVID-19 admissions were seen by the consultation team. Compared with prepandemic situation (September 1st, 2019, to February 29th, 2020), overall new consults (205 vs. 371, P < 0.001) significantly increased, particularly in the intensive care unit (ICU; 9.5% vs. 36.9%, P < 0.001). For the COVID-19 population, median age was 78 years (interquartile range, 70-87; range, 36-102); 56% were male. LACE score, D-dimer, and C-reactive protein suggested severe disease and increased risk of mortality. Seventy-five percent of consults were for goals of care-advanced care planning, and 9.6% for symptoms. During the index admission, 7.1% had documented advanced directives, and 69.7% became do not resuscitate. Of all deaths, 55.5% were in the ICU, and 87.2% were aged ≥65 years. Underserved minority patients had a disproportionate mortality. Overall consultation mortality (38.3% vs. 70.4%, P < 0.001) and ICU mortality (55.2% vs. 78.1%, P < 0.001) significantly increased compared with those before COVID-19. CONCLUSION: During this pandemic, understanding inpatient specialized palliative care needs and the vulnerable populations driving these causes may encourage health-care agencies and local, state, and federal governments to support the dedicated palliative care workforce.