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1.
Qual Life Res ; 32(4): 1095-1105, 2023 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-36520266

RESUMO

PURPOSE: To (1) Compare vision-related quality of life (VRQOL) in adolescent and young adult (AYA) unilateral versus bilateral retinoblastoma (RB) survivors using a vision-targeted measure and a generic health-related quality of life (HRQOL) measure and (2) Assess associations among VRQOL and generic HRQOL domains and overall QOL and estimate associations of the VRQOL and HRQOL domains with overall QOL. METHODS: The National Institute for Health (NIH) Toolbox® VRQOL instrument, PROMIS®-29 Profile v 2.1, and a single-item QOL measure were administered in a cross-sectional study of 101 RB survivors. Reliability for multi-item scales was estimated. Product-moment and Spearman rank correlation coefficients and stepwise ordinary least squares were used to measure associations of other variables with overall QOL. RESULTS: Significantly worse VRQOL was reported by bilateral than unilateral RB survivors. Cronbach's alpha coefficients for all VRQOL scales ranged from 0.83 to 0.95. Medium to large correlations were found between all NIH Toolbox® VRQOL scales and the PROMIS®-29 measures. Depression and ability to participate in social roles and activities from the PROMIS®-29 Profile accounted for 38% of the variance in overall QOL with the psychosocial domain of the NIH Toolbox® VRQOL explaining 16% of the variance. CONCLUSION: VRQOL is impaired in bilateral RB survivors. VRQOL is associated substantially with the PROMIS-29 generic HRQOL measure but has significant unique associations with overall QOL. The NIH Toolbox® VRQOL measure provides important information about the vision-related effects on daily life of AYA RB survivors.


Assuntos
Neoplasias da Retina , Retinoblastoma , Adolescente , Adulto Jovem , Humanos , Qualidade de Vida/psicologia , Retinoblastoma/psicologia , Estudos Transversais , Reprodutibilidade dos Testes , Inquéritos e Questionários , Neoplasias da Retina/psicologia , Sobreviventes/psicologia
2.
J Cardiovasc Nurs ; 2022 Dec 23.
Artigo em Inglês | MEDLINE | ID: mdl-36563323

RESUMO

BACKGROUND: Individuals living with mechanical circulatory support (MCS) devices are confronted with risks for catastrophic outcomes such as stroke and systemic infection. Considering these complexities, ongoing advance care planning (ACP) is important for shared decision making. OBJECTIVE: The purpose of this study was to describe how experiences of the MCS trajectory informed decision making about ACP. METHODS: All aspects of the research were guided by constructivist grounded theory. Focused conversations were conducted with a semistructured interview guide. RESULTS: A total of 24 community-dwelling patients living with MCS were interviewed (33% female; mean age, 60.6 years; 50% White). Participants were implanted with MCS (average duration, 29.8 months; bridge to transplant, 58%). Reflected in the narratives were tensions between initial expectations of living with the device in contrast with the realities that emerged over time. A crucial finding was that ACP decision making pivoted around the growing awareness of uncertainties in the MCS trajectory. Yet, clinicians were perceived to be silent in initiating ACP, and their reticence was understood as a sign of encouragement to hold on to hope for a heart transplant. The complex and dynamic decision-making processes around ACP were organized into the theory of pivoting uncertainties. CONCLUSIONS: In this sample, patients were ready to share their concerns about the uncertainties of living with MCS and waited for MCS clinicians to initiate ACP. The theory of pivoting uncertainties is useful for elucidating the ebb and flow of ACP and lending clinicians' guidance for opportunities to initiate these sensitive conversations.

3.
Cardiol Young ; 32(3): 465-471, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34162456

RESUMO

BACKGROUND: Caring for infants after the first-stage palliative surgery for single-ventricle heart disease bring challenges beyond the usual parenting responsibilities. Current studies fail to capture the nuances of caregivers' experiences during the most critical "interstage" period between the first and second surgery. OBJECTIVES: To explore the perceptions of caregivers about their experiences while transitioning to caregiver roles, including the successes and challenges associated with caregiving during the interstage period. METHODS: Constructivist Grounded Theory methodology guided the collection and analysis of data from in person or telephonic interviews with caregivers after their infants underwent the first-stage palliative surgery for single-ventricle heart disease, and were sent to home for 2-4 months before returning for their second surgery. Symbolic interactionism informed data analyses and interpretation. RESULTS: Our sample included 14 parents, who were interviewed 1-2 times between November, 2019 and July, 2020. Most patients were mothers (71%), Latinx (64%), with household incomes <$30K (42%). Data analysis led to the development of a Grounded Theory called Developing a Sense of Self-Reliance with three categories: (1) Owning caregiving responsibilities despite grave fears, (2) Figuring out how "to make it work" in the interstage period, and (3) Gaining a sense of self-reliance. CONCLUSIONS: Parents transitioned to caregiver roles by developing a sense of self-reliance and, in the process, gained self-confidence and decision-making skills. Our study responded to the key research priority from the AHA Scientific Statement to address the knowledge gap in home monitoring for interstage infants through qualitative research design.


Assuntos
Cardiopatias Congênitas , Síndrome do Coração Esquerdo Hipoplásico , Coração Univentricular , Cuidadores , Feminino , Cardiopatias Congênitas/cirurgia , Humanos , Lactente , Cuidados Paliativos , Pais
4.
Circulation ; 137(8): 865-871, 2018 02 20.
Artigo em Inglês | MEDLINE | ID: mdl-29459472

RESUMO

Cardiovascular disease (CVD) risk factors are well established. However, little is known about a woman's cardiovascular response to pregnancy, which appears to be an early marker of future maternal CVD risk. Spontaneous preterm delivery (sPTD) has been associated with a ≤3-fold increased risk of maternal CVD death later in life compared with having a term delivery. This review focuses on 3 key areas to critically assess the association of sPTD and future maternal CVD risk: (1) CVD risk factors, (2) inflammatory biomarkers of interest, and (3) specific forms of vascular dysfunction, such as endothelial function and arterial stiffness, and mechanisms by which each may be linked to sPTD. The association of sPTD with subsequent future maternal CVD risk suggests that a woman's abnormal response to pregnancy may serve as her first physiological stress test. These findings suggest that future research is needed to understand why women with sPTD may be at risk for CVD to implement effective interventions earlier in a woman's life.


Assuntos
Trabalho de Parto Prematuro , Complicações Cardiovasculares na Gravidez , Endotélio Vascular/metabolismo , Endotélio Vascular/fisiopatologia , Feminino , Humanos , Trabalho de Parto Prematuro/etiologia , Trabalho de Parto Prematuro/metabolismo , Trabalho de Parto Prematuro/fisiopatologia , Gravidez , Complicações Cardiovasculares na Gravidez/metabolismo , Complicações Cardiovasculares na Gravidez/fisiopatologia , Fatores de Risco , Rigidez Vascular
5.
J Radiol Nurs ; 36(3): 180-183, 2017 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-29081724

RESUMO

OBJECTIVE: Signs and symptoms of ischemia but no obstructive coronary artery disease (CAD) is often a diagnostic dilemma in women. The use of stress cardiac magnetic resonance imaging (CMRI) for advanced diagnostic assessment in these patients is a non-ionizing radiation option, but the diagnostic utility in this population is unknown. We examined the diagnostic role of stress CMRI in our patient population of these women. METHODS: We analyzed 113 consecutive female patients from 2/2006-11/2007 who had prior cardiac evaluations for signs and symptoms of ischemia but no obstructive CAD who underwent stress CMRI, which included anatomic, functional, adenosine stress perfusion and delayed enhancement imaging. RESULTS: The population demographics of 113 women included a mean age of 55±12.2 years with an average body mass index (BMI) of 25 ± 4.5. Overall, 43% had hypertension, 4% had diabetes and 3% were smokers. Overall, 80/113 (70%) demonstrated abnormal stress CMRI results. The majority of patients demonstrated findings consistent with subendocardial perfusion abnormalities suggestive of coronary microvascular dysfunction (CMD). Of note, 3 patients (4%) were diagnosed with congenital coronary anomalies or cardiomyopathy not detected in prior cardiac evaluations. CONCLUSION: Among women with signs and symptoms of ischemia but no obstructive CAD, stress CMRI is frequently abnormal and is valuable in diagnosis of CMD. Stress CMRI appears useful for advanced diagnostic assessment in these diagnostically challenged patients.

6.
J Behav Med ; 39(4): 687-93, 2016 08.
Artigo em Inglês | MEDLINE | ID: mdl-27017335

RESUMO

This paper evaluated long-term associations between psychosocial factors and premature mortality among women with suspected coronary artery disease (CAD). We tracked total mortality events over a median 9.3 years in a cohort of 517 women [baseline mean age = 58.3 (11.4) years]. Baseline evaluations included coronary angiography, psychosocial testing, and CAD risk factors. Measures included the Spielberger Trait Anxiety Scale, Beck Depression Inventory, self-rated health, and Social Network Index. Cox regression analysis was used to assess relationships. Covariates included age, CAD risk factors, and CAD severity. BDI scores (HR 1.09, 95 % CI 1.02-1.15), STAI scores (HR .86, 95 % CI .78-.93), and very good self-rated health (relative to the poor self-rated health group; HR .33, 95 % CI .12-.96) each independently predicted time to mortality outcomes in the combined model. SNI scores (HR .91, 95 % CI .81-1.06) and other self-rated health categories (i.e., fair, good, and excellent categories) were not significant mortality predictors after adjusting for other psychosocial factors. These results reinforce and extend prior psychosocial research in CAD populations.


Assuntos
Ansiedade/psicologia , Angiografia Coronária , Doença da Artéria Coronariana/mortalidade , Depressão/psicologia , Isquemia Miocárdica/mortalidade , Idoso , Doença da Artéria Coronariana/diagnóstico por imagem , Doença da Artéria Coronariana/psicologia , Feminino , Humanos , Pessoa de Meia-Idade , Isquemia Miocárdica/diagnóstico por imagem , Isquemia Miocárdica/psicologia , National Heart, Lung, and Blood Institute (U.S.) , Escalas de Graduação Psiquiátrica , Fatores de Risco , Índice de Gravidade de Doença , Estados Unidos
7.
J Cardiovasc Nurs ; 30(6): 479-83, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25203238

RESUMO

BACKGROUND: The American Heart Association created Go Red Heart Match, a free and secure online program that enables women to connect with each other to fight heart disease either personally or as a caregiver for someone with heart disease. Through these connections, participants have an opportunity to develop a personal, private, and supportive relationship with other women; share common experiences; and motivate and encourage each other to follow a heart-healthy lifestyle. OBJECTIVE: The aims of this study were to describe the demographic characteristics of the Go Red Heart Match responders and to determine whether participation in the program prompted participants to engage in heart-healthy behaviors. METHODS: A secondary analysis of data collected as part of a needs assessment survey from the American Heart Association Go Red Heart Match was conducted. RESULTS: A total of 117 (35%) of the 334 invited women completed the survey. Most responders were female, married, and college educated. A total of 105 (90%) responders were diagnosed with a type of heart disease or stroke and 77 (73%) responders had undergone treatment. As a result of participating in the program, 75% of the responders reported the following improvements in heart-healthy behaviors: eating a more heart-healthy diet (54%), exercising more frequently (53%), losing weight (47%), and quitting smoking (10%). Responders who had a diagnosis of heart attack (n = 48) were more likely (P = .003) to quit smoking than were those with other diagnoses (n = 69). Notably, 48% of responders reported encouraging someone else in their life to speak to their doctor about their risk for heart disease. CONCLUSIONS: Most women who participated in Heart Match reported engaging in new heart-healthy behaviors. The findings support expanding the existing program in a more diverse population as a potentially important way to reach women and encourage cardiovascular disease risk reduction for those with heart disease and stroke.


Assuntos
Comportamentos Relacionados com a Saúde , Promoção da Saúde , Cardiopatias/prevenção & controle , Adolescente , Adulto , American Heart Association , Dieta , Exercício Físico , Feminino , Humanos , Internet , Estilo de Vida , Pessoa de Meia-Idade , Motivação , Comportamento de Redução do Risco , Abandono do Hábito de Fumar , Apoio Social , Estados Unidos , Adulto Jovem
8.
J Cardiovasc Nurs ; 30(4): 319-24, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-24763358

RESUMO

AIMS: The aim of this study was to evaluate the relationship of ejection fraction (EF) and depressive symptoms in cardiac surgery patients assigned to nurse-guided cognitive behavioral therapy (CBT) or usual care (UC). METHODS: Depressive symptoms were assessed using the Beck Depression Inventory (BDI). Seventy-seven patients (31% women; mean [SD] age, 63.6 [9.8] years) received 8 weeks of either CBT or UC. Using repeated-measures analysis of variance, changes in depressive symptoms over time were evaluated. RESULTS: There was a significant interaction among time, treatment group, and EF status (p = 0.019). In the patients with preserved EF (≥40%), mean BDI scores in the UC group worsened by 1.9%, whereas those in the CBT group improved by 31.0%. In the patients with low EF (<40%), mean BDI scores worsened by 26.8% and improved by 75.3% in the UC and CBT groups, respectively. CONCLUSIONS: Nurse-guided CBT is effective in reducing depressive symptoms after cardiac surgery, particularly in patients with low EF.


Assuntos
Procedimentos Cirúrgicos Cardíacos , Terapia Cognitivo-Comportamental , Depressão/fisiopatologia , Depressão/terapia , Complicações Pós-Operatórias/fisiopatologia , Complicações Pós-Operatórias/terapia , Volume Sistólico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
9.
J Cardiovasc Nurs ; 29(3): 227-31, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-23507705

RESUMO

BACKGROUND: Perceived control has been suggested as a modifiable factor associated with health-related quality of life (HRQOL). However, the relationship between perceived control and HRQOL has not been evaluated in patients with heart failure (HF). The purpose of this study was to determine whether perceived control independently predicts HRQOL in HF patients. METHODS: A total of 423 HF patients were included. Hierarchical linear regression was performed to determine the independent association of perceived control to HRQOL after controlling for covariates. RESULTS: Higher levels of perceived control were associated with better HRQOL in univariate analysis. However, this relationship was strongly attenuated after controlling for relevant demographic, clinical, and psychological factors; the variance in HRQOL explained by the addition of perceived control to this model was small (1.4%). CONCLUSIONS: We found only a weak relationship between perceived control and HRQOL when considered in the presence of demographic, clinical, and psychological factors.


Assuntos
Adaptação Psicológica , Insuficiência Cardíaca , Qualidade de Vida , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Insuficiência Cardíaca/prevenção & controle , Insuficiência Cardíaca/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Modelos Teóricos , Análise de Regressão , Adulto Jovem
10.
Stroke ; 44(11): 3246-8, 2013 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-23982714

RESUMO

BACKGROUND AND PURPOSE: No approved acute therapy exists for thousands of patients with ischemic stroke who present ineligible for thrombolytics. The purpose of this proof-of-concept study was to evaluate the efficacy of acute antiplatelet loading on stroke outcome in the rabbit small clot embolic model. METHODS: Sixty male New Zealand white rabbits were embolized via small clots into the middle cerebral artery. Two hours later, animals were treated with (1) aspirin (5 mg/kg; n=20); (2) usual dual antiplatelet loading (aspirin 10 mg/kg+clopidogrel 10 mg/kg; n=20); or (3) high-dose dual antiplatelet loading (aspirin 10 mg/kg+clopidogrel 30 mg/kg; n=20). The coprimary outcomes were as follows: (1) platelet inhibition and (2) behavioral outcome as measured by the P50 (milligrams of clot that leads to neurological dysfunction in 50% of animals in a group). RESULTS: There was a significant difference in 3-hour arachidonic acid and ADP (P<0.011); 6-hour collagen and ADP (P<0.01, P<0.01); and 24-hour collagen, arachidonic acid, and ADP (P=0.02, P<0.01, P<0.01) platelet inhibition. The behavioral outcome was significantly better in the usual dual antiplatelet loading versus aspirin group (P=0.02). CONCLUSIONS: This study suggests that usual dual antiplatelet loading is clinically beneficial in a validated model of acute stroke. Study of usual dual antiplatelet loading in acute stroke is warranted to provide treatment to stroke victims ineligible for current therapies.


Assuntos
Plaquetas/efeitos dos fármacos , Isquemia Encefálica/tratamento farmacológico , Inibidores da Agregação Plaquetária/farmacologia , Difosfato de Adenosina/sangue , Animais , Ácido Araquidônico/sangue , Aspirina/farmacologia , Colágeno/sangue , Modelos Animais de Doenças , Embolização Terapêutica , Fibrinolíticos/farmacologia , Masculino , Coelhos , Distribuição Aleatória , Resultado do Tratamento
11.
Psychosom Med ; 74(3): 263-70, 2012 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-22434916

RESUMO

BACKGROUND: There is overlap among psychosocial predictors of cardiovascular disease (CVD). The usefulness of combining psychosocial variables as risk markers for CVD needs investigation. METHODS: Participants were 493 women in the NHLBI WISE study. Multivariate combination of Beck Depression Inventory (BDI), State-Trait Anxiety Inventory (STAI), Social Network Index (SNI), and Cook-Medley hostility subscales was evaluated, and principal components analysis also conducted. Relationships of composite psychosocial risk markers to CVD events and risk factors were assessed. RESULTS: The multivariate block of SNI, Cook-Medley Hostile Affect subscale, STAI, and BDI predicted CVD events (χ(2) = 27.8, df = 6, p < .001). Scalewise factor analysis revealed 2 factors: negative affectivity (NA) and hostility (explained variance, 45.6% and 17.1%, respectively). NA was associated with BMI (ß [SE] = 0.18 [0.09], p = .04), hostility with metabolic syndrome (exp(ß) = 0.60 [0.28], p = .04). Both factors were associated with blood pressure (BP): NA with SBP (ß = 2.53 [1.04], p = .02) and DBP (ß = 1.66 [0.60], p = .02); hostility with SBP (ß = 2.72 [1.13], p = .02) and DBP (ß = 1.83 [0.65], p = .005). Neither factor predicted CVD events. Original scales predicted CVD events: lower SNI (HR = 0.74, CI = 0.57-0.96), lower Hostile Affect (HR = 0.80, CI = 0.56-1.03), and higher BDI (HR = 1.33, CI = 1.08-1.74). CONCLUSIONS: In women with suspected ischemia, multivariate combination of psychosocial risk markers predicts CVD events; derived psychosocial factors were associated with CVD risk factors but not events. Measuring common variance among psychosocial variables may be a useful research strategy.


Assuntos
Doenças Cardiovasculares/epidemiologia , Doenças Cardiovasculares/psicologia , Apoio Social , Saúde da Mulher/estatística & dados numéricos , Ira , Pressão Sanguínea/fisiologia , Índice de Massa Corporal , Angiografia Coronária , Interpretação Estatística de Dados , Métodos Epidemiológicos , Feminino , Hostilidade , Humanos , Síndrome Metabólica/epidemiologia , Pessoa de Meia-Idade , Isquemia Miocárdica/diagnóstico por imagem , Isquemia Miocárdica/epidemiologia , National Heart, Lung, and Blood Institute (U.S.) , Determinação da Personalidade/estatística & dados numéricos , Escalas de Graduação Psiquiátrica/estatística & dados numéricos , Estresse Psicológico/epidemiologia , Estados Unidos/epidemiologia
12.
Pediatr Cardiol ; 33(5): 705-12, 2012 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-22314368

RESUMO

Single-ventricle congenital heart disease (SVCHD) requires multiple palliative surgical procedures that leave visible surgical scars and physical deficits, which can alter body-image and self-esteem. This study aimed to compare sex and age differences in body-image, self-esteem, and body mass index (BMI) in adolescents and adults with SVCHD after surgical palliation with those of a healthy control group. Using a comparative, cross-sectional design, 54 adolescent and adult (26 male and 28 female) patients, age 15­50 years, with SVCHD were compared with 66 age-matched healthy controls. Body-image and self-esteem were measured using the Multidimensional Body-Self Relations Questionnaire­Appearance Scale and Rosenberg Self-Esteem Scale. Height and weight were collected from retrospective chart review, and BMI was calculated. Female adolescents and adult patients with SVCHD reported lower body image compared with males patients with SVCHD and healthy controls (p = 0.003). Specific areas of concern were face (p = 0.002), upper torso or chest (p = 0.002), and muscle tone (p = 0.001). Patients with SVCHD who were \21 years of age had lower body image compared with healthy controls (p = 0.006). Self-esteem was comparable for both patients with SVCHD and healthy peers. There were no sex differences in BMI; BMI was higher in subjects[21 years of age (p = 0.01). Despite the similarities observed in self-esteem between the two groups, female patients with SVCHD\21 years of age reported lower perceived body-image. Our findings support the need to recognize poor psychological adjustment related to low self-esteem in patients with SVCHD; female patients warrant increased scrutiny. Strategies to help patients with SVCHD cope with nonmodifiable aspects of body-image during the difficult adolescent­to­young adult years may potentially enhance self-esteem and decrease psychological distress.


Assuntos
Imagem Corporal , Índice de Massa Corporal , Cardiopatias Congênitas/psicologia , Cardiopatias Congênitas/cirurgia , Cuidados Paliativos , Autoimagem , Adolescente , Adulto , Fatores Etários , Análise de Variância , Estudos de Casos e Controles , Estudos Transversais , Feminino , Humanos , Masculino , Fatores Sexuais , Inquéritos e Questionários , Resultado do Tratamento
13.
J Cardiovasc Nurs ; 27(6): 539-46, 2012.
Artigo em Inglês | MEDLINE | ID: mdl-21912272

RESUMO

BACKGROUND: Quality of life (QOL) in adolescents and adults who have undergone the Fontan procedure and are living with only 1 ventricle is presumed to be diminished. OBJECTIVES: This study aimed to compare QOL, health status, and prevalence of depression in adolescents/adults after the Fontan procedure with healthy counterparts and to identify predictors of QOL in the Fontan group. METHODS: Using a comparative, cross-sectional design, 54 adolescents and adults with single ventricle congenital heart disease who have undergone the Fontan procedure were compared with 66 age-matched healthy counterparts. Quality of life, health status, depression, and social support were measured using the Satisfaction With Life Scale, Short Form Survey Version 2, Patient Health Questionnaire Depression Module, and Multidimensional Scale of Perceived Social Support. Clinical variables were abstracted from medical records. Predictors of QOL were determined using multiple linear regression. RESULTS: Adolescents and adults in the Fontan group reported lower physical health status (mean [SD] = 46.5 [9.3] vs mean [SD] = 55.9 [5.1], P < .001) and were more depressed (mean [SD] = 7.3 [5.9] vs mean [SD] = 4.5 [4.3], P < .004) than their healthy counterparts. There were no differences in QOL, mental health status, or social support between the 2 groups. Functional status (New York Heart Association class), depression, and social support accounted for 55% of the variance in QOL in the Fontan group. CONCLUSIONS: Despite lower levels of physical health, the QOL of Fontan patients was comparable with that of their healthy counterparts; this finding contradicts previous proxy reports, self-reports, and assumptions that QOL is lower in patients with complex single ventricle congenital heart disease. However, because Fontan patients were more depressed than their healthy counterparts, the need for early screening and detection is warranted.


Assuntos
Depressão/epidemiologia , Depressão/etiologia , Técnica de Fontan/efeitos adversos , Nível de Saúde , Qualidade de Vida , Adolescente , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Estudos Retrospectivos , Inquéritos e Questionários , Adulto Jovem
14.
World J Pediatr Congenit Heart Surg ; 13(4): 443-450, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35585726

RESUMO

Background: Infants born with single ventricle heart disease require in-home medicalized care during the interstage period (time between the first and second staged heart surgery). These caregivers rely on extended family, friends, and hired caretakers to provide respite time. However, the coronavirus pandemic removed these families' options due to stay-at-home and social distancing directives. We explored the caregivers' experiences during the interstage period, including impacts on their lifestyle, as they managed their infants' critical needs during the coronavirus disease 2019 pandemic. Method: In-person or telephonic interviews of 14 caregivers interviewed once or twice were conducted between November 2019 and July 2020. Constructivist Grounded Theory methodology guided both data collection and analysis for the inductive and abductive exploration of caregivers' experiences. Results: Data analysis led to the development of 2 concepts: Accepting and adapting to a restrictive home environment and Reconciling what is and what is yet to come. Refinement of the relationship between the 2 concepts led to the development of a theory grounded in the words and experiences of the participants called: A Continuous Process of Compromise. Conclusions: Our findings increase understanding of caregivers' experiences related to psychosocial and lifestyle impacts and the need for additional support during the interstage period.


Assuntos
COVID-19 , Serviços de Assistência Domiciliar , Síndrome do Coração Esquerdo Hipoplásico , Humanos , Síndrome do Coração Esquerdo Hipoplásico/cirurgia , Lactente , Pandemias , Resultado do Tratamento
15.
Heart Lung ; 54: 34-41, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35338939

RESUMO

BACKGROUND: People living with mechanical circulatory support (MCS) are at risk for catastrophic complications that require advance care planning (ACP) as part of the preimplantation work up. Palliative care consultants are a mandatory and essential component of the MCS team tasked to enhance conversations. However, in reality, there is often a serious deficiency of ACP communication after the initial implant counseling. A better understanding of opportunities and challenges in ACP can mobilize intensive care unit and step-down nurses to bridge this gap in crucial communication. OBJECTIVES: To identify and describe MCS individuals' perceptions of opportunities and challenges for ongoing ACP communication. METHODS: A constructivist grounded theory study was conducted with 24 MCS individuals from 2 medical centers in Southern California. Semi-structured interviews were audio recorded, transcribed, and reviewed for accuracy. The data were systematically analyzed through 3 rounds of coding. RESULTS: MCS clinicians, supportive others, and peers with MCS were identified as stakeholders in ongoing communication. Four categories of opportunities and challenges for ongoing ACP were synthesized from the narratives: identifying context and timing, sharing information, understanding of ACP, and assessing satisfaction. All participants reported a preference for MCS clinicians, including nurses, to initiate ACP conversations. CONCLUSION: Understanding opportunities and challenges is key to facilitating ongoing ACP discussions among MCS patients. MCS-trained nurses are positioned to address the dearth of ongoing ACP by facilitating these sensitive discussions. The personal accounts of this sample serve to guide future research and structure training to prepare MCS clinicians for primary palliative care.


Assuntos
Planejamento Antecipado de Cuidados , Comunicação , Aconselhamento , Humanos , Estudos Longitudinais , Cuidados Paliativos
16.
J Pediatr Hematol Oncol Nurs ; 39(6): 342-357, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35674414

RESUMO

Background: Retinoblastoma (RB) is a malignant intraocular tumor diagnosed in early childhood that requires extensive medical and surgical treatment at a young age. Health-related quality of life (HRQOL) is thought to be diminished due to visual impairment, facial deformities, and fear of recurrence or secondary cancer. However, few studies have identified variables associated with HRQOL among those with RB. Purpose: To compare HRQOL of adolescents and young adults (AYAs) with RB to matched controls and to identify predictors of HRQOL in RB survivors. Methods: Using a cross-sectional design, 198 AYAs (101 RBs and 97 controls) completed HRQOL (PROMIS®-29 profile) and psychosocial questionnaires (Rosenberg self-esteem scale, multidimensional scale of perceived social support, and Hollingshead index for socioeconomic status). Clinical variables (age at diagnosis, visual acuity, laterality, heredity, treatment regime, and anesthesia exposure) were extracted from the medical record. Correlates of HRQOL were estimated using linear regression models. Results: RB survivors reported similar HRQOL compared to controls. Physical function (p < .001), social support (p = .013), and self-esteem (p = .028) were lower in the RB group compared to controls. Visual acuity and self-esteem accounted for 52% of the variance in PROMIS physical health summary scores and self-esteem accounted for 38% of the variance in mental health summary scores. Conclusion: Despite deficits in physical function and self-esteem HRQOL in RB survivors was comparable to healthy counterparts. However, the majority of RB survivors in this study had normal visual acuity. Clinicians should explore ways to enhance self-esteem in RB survivors.


Assuntos
Neoplasias da Retina , Retinoblastoma , Adolescente , Adulto Jovem , Pré-Escolar , Humanos , Qualidade de Vida/psicologia , Estudos Transversais , Sobreviventes/psicologia
17.
Heart Mind (Mumbai) ; 5(4): 112-118, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34966880

RESUMO

BACKGROUND: Depression is an established predictor of coronary artery disease (CAD) progression and mortality. "Somatic" symptoms of depression such as fatigue and sleep impairment overlap with symptoms of CAD and independently predict CAD events. Differentiating between "somatic" and "cognitive" depressive symptoms in at-risk patients may improve our understanding of the relationship between depression and CAD. METHODS: The study utilized data from the Women's Ischemia Syndrome Evaluation. Participants (N = 641; mean age = 58.0 [11.4] years) were enrolled to evaluate chest pain or suspected myocardial ischemia. They completed a battery of symptom and psychological questionnaires (including the Beck Depression Inventory [BDI]) at baseline, along with quantitative coronary angiography and other CAD diagnostic procedures. The BDI provided scores for total depression and for cognitive and somatic depressive symptom subscales. RESULTS: Two hundred and fourteen (33.4%) women met criteria for obstructive CAD. Logistic regression models were used to examine relationships between depression symptoms and obstructive CAD. Neither BDI total scores (odds ratio [OR] =1.02, 95% confidence interval [CI], 0.99-1.05, P = 0.053) nor BDI cognitive scores (OR = 1.02, 95% CI, 1.00-1.04, P = 0.15) predicted CAD status. BDI somatic symptom scores, however, significantly predicted CAD status and remained statistically significant after controlling for age, race, and education (OR = 1.06, 95% CI, 1.01-1.12, P = 0.02). CONCLUSION: Among women with suspected myocardial ischemia, somatic but not cognitive depressive symptoms predicted an increased risk of obstructive CAD determined by coronary angiography. Consistent with prior reports, these results suggest a focus on somatic rather than cognitive depressive symptoms could offer additional diagnostic information.

18.
Psychosom Med ; 72(6): 549-55, 2010 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-20410246

RESUMO

OBJECTIVE: To determine the association between self-rated health and major cardiovascular events in a sample of women with suspected myocardial ischemia. Previous studies showed that self-rated health is a predictor of objective health outcomes, such as mortality. METHOD: At baseline, 900 women rated their health on a 5-point scale ranging from poor to excellent as part of a protocol that included quantitative coronary angiography, cardiovascular disease (CVD) risk factor assessment, cardiac symptoms, psychotropic medication use, and functional impairment. Participants were followed for a maximum of 9 years (median, 5.9 years) to determine the prevalence of major CVD events (myocardial infarction, heart failure, stroke, and CVD-related death). RESULTS: A total of 354 (39.3% of sample) participants reported their health as either poor or fair. After adjusting for demographic factors, CVD risk factors, and coronary artery disease severity, women who rated their health as poor (hazard ratio, 2.1 [1.1-4.2]) or fair (hazard ratio, 2.0 [1.2-3.6]) experienced significantly shorter times to major CVD events compared with women who rated their health as excellent or very good. Further adjustment for functional impairment, however, attenuated the self-rated health relationships with major CVD events. CONCLUSIONS: Among women with suspected myocardial ischemia, self-rated health predicted major CVD events independent of demographic factors, CVD risk factors, and angiogram-defined disease severity. However, functional impairment seemed to explain much of the self-rated health association. These results support the clinical utility of self-rated health scores in women and encourage a multidimensional approach to conceptualizing these measures.


Assuntos
Doenças Cardiovasculares/epidemiologia , Doenças Cardiovasculares/mortalidade , Indicadores Básicos de Saúde , Nível de Saúde , Inquéritos e Questionários , Doenças Cardiovasculares/diagnóstico , Doença da Artéria Coronariana/diagnóstico , Doença da Artéria Coronariana/epidemiologia , Doença da Artéria Coronariana/mortalidade , Feminino , Insuficiência Cardíaca/diagnóstico , Insuficiência Cardíaca/epidemiologia , Insuficiência Cardíaca/mortalidade , Humanos , Estudos Longitudinais , Pessoa de Meia-Idade , Infarto do Miocárdio/diagnóstico , Infarto do Miocárdio/epidemiologia , Infarto do Miocárdio/mortalidade , Isquemia Miocárdica/diagnóstico , Isquemia Miocárdica/epidemiologia , Isquemia Miocárdica/mortalidade , National Heart, Lung, and Blood Institute (U.S.) , Probabilidade , Modelos de Riscos Proporcionais , Fatores de Risco , Classe Social , Fatores Socioeconômicos , Resultado do Tratamento , Estados Unidos , Saúde da Mulher
19.
J Pediatr Oncol Nurs ; 37(2): 116-127, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31762375

RESUMO

Background: Retinoblastoma is a malignant tumor of the eye that typically presents in early childhood and occurs in approximately 1 in 20,000 births. While active treatment of the tumor is typically completed in childhood, survivors often suffer from long-term effects from treatment including visual impairment, facial deformities, and fear of recurrence or secondary cancer. However, little is known how these long-term effects affect their health-related quality of life (HRQOL). Purpose: To review the literature on HRQOL in retinoblastoma survivors. Method: We searched three electronic databases from January 2005 to December 2018 for original research articles reporting on HRQOL or individual domains such as function, cognition, and psychosocial outcomes in retinoblastoma survivors. Results: A total of 59 articles were reviewed and 15 were identified as eligible. Five of the studies reported worse HRQOL in retinoblastoma survivors than controls or general population norms. Parent-proxy ratings were worse than survivors' self-reports. Conclusion: Our findings confirm the need for further HRQOL research to assess the factors influencing long-term outcomes associated with treatment in adolescent and young adult retinoblastoma survivors. By identifying any potential deficits in specific domains of HRQOL, early interventions might be developed to improve HRQOL in retinoblastoma survivors.


Assuntos
Sobreviventes de Câncer/psicologia , Qualidade de Vida/psicologia , Neoplasias da Retina/psicologia , Retinoblastoma/psicologia , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Autorrelato , Inquéritos e Questionários , Adulto Jovem
20.
Stress Health ; 36(3): 264-273, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31957961

RESUMO

This paper evaluated cross-sectional relationships between psychological stress and coronary artery disease (CAD) risk among women with suspected ischaemia and no obstructive coronary artery disease (INOCA). Between 1996 and 2000, 551 women with INOCA were enrolled in the Women's Ischemia Syndrome Evaluation (WISE) cohort from four U.S. institutions. Between 2009 and 2012, 376 women with INOCA were recruited from two U.S. institutions for an independent cohort study titled WISE-Coronary Vascular Dysfunction (WISE-CVD). Participants underwent coronary angiography and testing for CAD symptoms and risk factors at baseline. Psychological stress was assessed in the form of home/work stress in WISE and home/work stress and financial stress in WISE-CVD. Results showed that home/work stress predicted greater depression, functional impairment, CAD symptoms, and lower self-rated health in WISE but was inconsistent as a predictor in WISE-CVD. In contrast, >60% of WISE-CVD women reported moderate or severe financial stress. Financial stress levels predicted more CAD risk factors and cardiac symptoms, poorer self-rated health, and greater depression and functional impairment. Among women with INOCA, psychological stress was associated with CAD symptoms and CAD risk factors. The prevalence and predictive value of psychological stress in this population supports the inclusion of stress measures in future CAD research.


Assuntos
Doença da Artéria Coronariana/epidemiologia , Isquemia Miocárdica/epidemiologia , Estresse Psicológico/epidemiologia , Adulto , Idoso , Estudos de Coortes , Angiografia Coronária , Doença da Artéria Coronariana/diagnóstico por imagem , Estudos Transversais , Feminino , Fatores de Risco de Doenças Cardíacas , Hemodinâmica , Humanos , Pessoa de Meia-Idade , Isquemia Miocárdica/diagnóstico por imagem , Valor Preditivo dos Testes , Análise de Regressão , Estados Unidos/epidemiologia
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