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1.
Health Qual Life Outcomes ; 19(1): 187, 2021 Jul 28.
Artigo em Inglês | MEDLINE | ID: mdl-34321045

RESUMO

BACKGROUND: Advances in paediatric cardiology have improved the prognosis of children with inherited cardiac disorders. However, health-related quality of life (QoL) and physical activity have been scarcely analysed in children with inherited cardiac arrhythmia or inherited cardiomyopathy. Moreover, current guidelines on the eligibility of young athletes with inherited cardiac disorders for sports participation mainly rely on expert opinions and remain controversial. METHODS: The QUALIMYORYTHM trial is a multicentre observational controlled study. The main objective is to compare the QoL of children aged 6 to 17 years old with inherited cardiac arrhythmia (long QT syndrome, Brugada syndrome, catecholaminergic polymorphic ventricular tachycardia, or arrhythmogenic right ventricular dysplasia), or inherited cardiomyopathy (hypertrophic, dilated, or restrictive cardiomyopathy), to that of age and gender-matched healthy subjects. The secondary objective is to assess their QoL according to the disease's clinical and genetic characteristics, the level of physical activity and motivation for sports, the exercise capacity, and the socio-demographic data. Participants will wear a fitness tracker (ActiGraph GT3X accelerometer) for 2 weeks. A total of 214 children are required to observe a significant difference of 7 ± 15 points in the PedsQL, with a power of 90% and an alpha risk of 5%. DISCUSSION: After focusing on the survival in children with inherited cardiac disorders, current research is expanding to patient-reported outcomes and secondary prevention. The QUALIMYORYTHM trial intends to improve the level of evidence for future guidelines on sports eligibility in this population. Trial registration ClinicalTrials.gov Identifier: NCT04712136, registered on January 15th, 2021 ( https://clinicaltrials.gov/ct2/show/NCT04712136 ).


Assuntos
Arritmias Cardíacas/genética , Cardiomiopatias/genética , Exercício Físico , Qualidade de Vida/psicologia , Adolescente , Arritmias Cardíacas/psicologia , Cardiomiopatias/psicologia , Criança , Morte Súbita Cardíaca , Exercício Físico/fisiologia , Exercício Físico/psicologia , Feminino , Humanos , Masculino , Oxigênio , Consumo de Oxigênio , Estudos Prospectivos
2.
BMC Cardiovasc Disord ; 21(1): 398, 2021 08 18.
Artigo em Inglês | MEDLINE | ID: mdl-34407750

RESUMO

BACKGROUND: Congenital heart disease (CHD) accounts for nearly a third of all major congenital anomalies. Advances in pediatric cardiology shifted attention from mortality to morbidity and health-related quality of life (HRQOL) of patients with CHD and impact on their families. The purposes of this study were to assess the validity and reliability of the Italian version of the Pediatric Quality of Life (PedsQL) Cardiac Module and to create normative data for the Italian population. METHODS: This was an observational cross-sectional study of pediatric patients (aged 2-18 years) with congenital or acquired Heart Disease (HD) and their parents. Families were asked to complete the cardiac pediatric health-related quality of life questionnaire (the Italian PedsQL™ 3.0 Cardiac Module) and the generic pediatric health-related quality of life questionnaire (PedsQL™ 4.0 Generic Core Scales). The sequential validation procedure of the original United States version of the PedsQL™ 3.0 Cardiac Module was carried out under the instruction of the MAPI Research Institute. To assess construct validity, Pearson's correlation coefficients were assessed between scores on the Cardiac Module scales and scores on the scales of the General Module. To determine agreement between patient self-report and parent proxy-report, we used intraclass correlation coefficients (ICCs). To evaluate Internal consistency of items, we used Cronbach's alpha Coefficient. RESULTS: The study enrolled 400 patients. Construct validity is good between PedsQL Cardiac Module total scores and PedsQL total scores (p < 0.001). The recommended standard value of 0.7 was reached on the Cardiac and General Module core scales. Intercorrelations between PedsQL Cardiac module and PedsQL scores revealed medium to large correlations. In general, correlations between Patient self-reports are poorer than Parent-proxy ones. CONCLUSIONS: Cardiac PedsQL scores are valid and reliable for pediatric patients with congenital and acquired HD and may be useful for future research and clinical management.


Assuntos
Cardiomiopatias/diagnóstico , Cardiopatias Congênitas/diagnóstico , Qualidade de Vida , Inquéritos e Questionários , Adolescente , Fatores Etários , Cardiomiopatias/fisiopatologia , Cardiomiopatias/psicologia , Criança , Pré-Escolar , Estudos Transversais , Feminino , Nível de Saúde , Cardiopatias Congênitas/fisiopatologia , Cardiopatias Congênitas/psicologia , Humanos , Itália , Masculino , Saúde Mental , Pais , Valor Preditivo dos Testes , Procurador , Psicometria , Reprodutibilidade dos Testes , Autorrelato
3.
J Cardiovasc Nurs ; 34(1): 20-28, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30273257

RESUMO

BACKGROUND: Psychological distress can adversely affect heart failure prognosis, yet the immediate and ongoing challenges faced by women diagnosed with peripartum cardiomyopathy (PPCM) are not well studied. OBJECTIVE: We examined psychological distress and quality of life in a large, national sample of patients with PPCM and evaluated whether these characteristics differ among newly diagnosed (0-1 year), short-term (2-4 years), and long-term (5-10 years) survivors. METHODS: One hundred forty-nine patients with PPCM (mean age, 33.9 ± 5.0 years) recruited from a web-based registry completed questionnaires about generalized anxiety (Generalized Anxiety Disorder-7), cardiac anxiety (Cardiac Anxiety Questionnaire [CAQ]), health status (Medical Outcomes Study Short-Form 12 [SF-12] Health Survey), and PPCM-specific quality-of-life concerns. Group differences were evaluated using multivariate statistics with adjustments for disease severity and psychiatric history. RESULTS: Generalized anxiety symptoms higher than the clinical cutoff were reported by 53% of patients with PPCM. Mean scores on the CAQ (1.9 ± 0.7) and CAQ subscale scores (cardiac-specific fear [2.1 ± 0.8], avoidance [1.7 ± 0.9], and heart-focused attention [1.6 ± 0.8]) were elevated in the overall sample. Psychological symptoms and quality-of-life concerns were generally similar across patients except for cardiac avoidance, which was significantly higher in newly diagnosed women after adjustments for disease severity (P = .05) and psychiatric history (P = .01). Peripartum cardiomyopathy-specific quality-of-life concerns were also prevalent; however, group differences were nonsignificant (P = .07). CONCLUSIONS: Generalized anxiety, cardiac anxiety, and quality-of-life concerns are prevalent among patients with PPCM at all stages of recovery. Psychological issues may be an underrecognized aspect of women's recovery from PPCM.


Assuntos
Cardiomiopatias/psicologia , Depressão/psicologia , Período Periparto/psicologia , Complicações Cardiovasculares na Gravidez/psicologia , Qualidade de Vida/psicologia , Sobreviventes/psicologia , Adulto , Cardiomiopatias/complicações , Depressão/etiologia , Feminino , Humanos , Gravidez , Inquéritos e Questionários
4.
J Genet Couns ; 27(4): 927-934, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29243008

RESUMO

Inherited cardiomyopathies, including hypertrophic cardiomyopathy (HCM) and dilated cardiomyopathy (DCM), are the most common monogenic cause of cardiac disease and can rarely lead to sudden cardiac death (SCD). They are characterized by incomplete and age-dependent penetrance and are usually initially symptomatic in adulthood yet can present in childhood as well. Over 20 genes have been identified to cause HCM, and more than 40 genes are known to cause DCM. Genetic testing for these genes has been integrated into medical care; however, the psychological impact of genetic testing and the impact of the uncertainty that comes with receiving these results have not been well studied. This study surveyed 90 adult probands and relatives with a personal or family history of cardiomyopathy from a single hospital-based cardiac genetic program to determine the psychosocial impact of genetic testing for cardiomyopathies. Standardized psychological instruments including an adapted Multidimensional Impact of Cancer Risk Assessment (aMICRA), Impact of Event Scale (IES), and Satisfaction with Decision (SWD) scales were utilized. Patients with positive genetic test results had higher scores for intrusive thoughts, avoidance, and distress when compared to those with negative genetic test results and were also more likely to make or plan to make life changes because of the results of their genetic testing. Satisfaction with the decision to undergo genetic testing was similar regardless of genetic test results. The results of this study provide insight into the patient experience of genetic testing for cardiomyopathies and how these experiences are associated with genetic test results and cardiac history.


Assuntos
Cardiomiopatias/genética , Cardiomiopatias/psicologia , Família/psicologia , Aconselhamento Genético/psicologia , Predisposição Genética para Doença/psicologia , Adulto , Cardiomiopatias/prevenção & controle , Cardiomiopatia Hipertrófica/genética , Cardiomiopatia Hipertrófica/psicologia , Estudos Transversais , Feminino , Aconselhamento Genético/métodos , Predisposição Genética para Doença/genética , Testes Genéticos/métodos , Humanos , Masculino , Fatores de Risco
5.
BMC Psychiatry ; 17(1): 14, 2017 01 13.
Artigo em Inglês | MEDLINE | ID: mdl-28086847

RESUMO

BACKGROUND: Sarcoidosis is a systemic disease of unknown etiology, in which granulomas develop in various organs, including the skin, lungs, eyes, or heart. It has been reported that patients with sarcoidosis are more likely to develop panic disorder than members of the general population. However, there are many unknown factors concerning the causal relationship between these conditions. CASE PRESENTATION: We present the case of a 57-year-old woman who appeared to have panic disorder, as she experienced repeated panic attacks induced by transient complete atrioventricular block, associated with cardiac sarcoidosis. Psychotherapy and pharmacotherapy were not effective in the treatment of her panic attacks. However, when we implanted a permanent pacemaker and initiated steroid treatment for cardiac sarcoidosis, panic attacks were ameliorated. Based on these findings, we diagnosed the patient's symptoms as an anxiety disorder associated with cardiac sarcoidosis, rather than panic disorder. CONCLUSIONS: This report highlights the importance of considering cardiac sarcoidosis in the differential diagnosis of panic disorder. This cardiac disease should be considered especially in patients have a history of cardiac disease (e.g., arrhythmia) and atypical presentations of panic symptoms. Panic disorder is a psychiatric condition that is typically diagnosed after other medical conditions have been excluded. Because the diagnosis of sarcoidosis is difficult in some patients, caution is required. The palpitations and symptoms of heart failure associated with cardiac sarcoidosis can be misdiagnosed as psychiatric symptoms of panic disorder. The condition described in the current case study appears to constitute a physical disease, the diagnosis of which requires significant consideration and caution.


Assuntos
Cardiomiopatias/diagnóstico , Cardiomiopatias/psicologia , Transtorno de Pânico/diagnóstico , Transtorno de Pânico/psicologia , Sarcoidose/diagnóstico , Sarcoidose/psicologia , Cardiomiopatias/fisiopatologia , Diagnóstico Diferencial , Erros de Diagnóstico , Eletrocardiografia/psicologia , Feminino , Humanos , Pessoa de Meia-Idade , Transtorno de Pânico/fisiopatologia , Sarcoidose/fisiopatologia
6.
BMC Pregnancy Childbirth ; 16(1): 386, 2016 12 08.
Artigo em Inglês | MEDLINE | ID: mdl-27931191

RESUMO

BACKGROUND: Peripartum cardiomyopathy is often associated with severe heart failure occurring towards the end of pregnancy or in the months following birth with debilitating, exhausting and frightening symptoms requiring person-centered care. The aim of this study was to explore women's experiences of health care while being diagnosed with peripartum cardiomyopathy. METHOD: Qualitative interviews were conducted with 19 women with peripartum cardiomyopathy in Sweden, following consent. Data were analysed using qualitative content analysis. Confirmability was ensured by peer-debriefing, and an audit trail was kept to establish the credibility of the study. RESULTS: The main theme in the experience of health care was, 'Exacerbated Suffering', expressed in three subthemes; 'not being cared about', 'not being cared for' and 'not feeling secure.' The suffering was present in relation to the illness with failing health symptoms, but most of all in relation to not being taken seriously and adequately cared for by healthcare professionals. Women felt they were on an assembly line in midwives' routine work where knowledge about peripartum cardiomyopathy was lacking and they showed distrust and dissatisfaction with care related to negligence and indifference experienced from healthcare professionals. Feelings of being alone and lost were prominent and related to a sense of insecurity, distress and uneasiness. CONCLUSIONS: This study shows a knowledge gap of peripartum cardiomyopathy in maternity care personnel. This is alarming as the deprecation of symptoms and missed diagnosis of peripartum cardiomyopathy can lead to life-threatening consequences. To prompt timely diagnosis and avoid unnecessary suffering it is important to listen seriously to, and respect, women's narratives and act on expressions of symptoms of peripartum cardiomyopathy, even those overlapping normal pregnancy symptoms.


Assuntos
Cardiomiopatias/psicologia , Período Periparto/psicologia , Cuidado Pós-Natal/psicologia , Transtornos Puerperais/psicologia , Adulto , Feminino , Humanos , Tocologia , Satisfação do Paciente , Gravidez , Relações Profissional-Paciente , Pesquisa Qualitativa , Suécia , Confiança
7.
Cardiol Young ; 26(5): 885-93, 2016 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-26277874

RESUMO

Advancements in paediatric heart failure management have resulted in improved survival and a focus on long-term outcomes including health-related quality of life. We compared health-related quality of life in children with heart failure with healthy patients, children with chronic conditions, and children with cardiovascular disease. Families (n=63) and children (n=73) aged 2-20 years with heart failure were enrolled and compared with data previously published for healthy patients (n=5480), those with chronic conditions (n=247), and those with cardiovascular disease (n=347). Patients and parents completed the PedsQL 4.0 and the Cardiac 3.0 Module health-related quality-of-life questionnaires. PedsQL scores including Total, Psychosocial Health Summary, and Physical were compared between groups. In general, patients with heart failure had lower scores than the healthy population (p=0.001), and comparable scores with those with chronic conditions. Parents perceived no difference in physical scores for children with heart failure when compared with healthy children, and perceived higher scores for children with heart failure when compared with those with chronic conditions (p⩽0.003). Furthermore, children with heart failure had decremental health-related quality-of-life scores as the American Heart Association stage of heart failure increased, such that patients with stage C heart failure had scores similar to children with severe cardiovascular disease. Children with heart failure reported significantly impaired health-related quality of life compared with healthy children and similar scores compared with children with chronic conditions. Parental perceptions appear to underestimate these impairments. Children with heart failure appear to have progressive impairment of health-related quality of life with advancing stage of heart failure.


Assuntos
Cardiomiopatias/psicologia , Insuficiência Cardíaca/psicologia , Pais/psicologia , Qualidade de Vida , Adolescente , Estudos de Casos e Controles , Criança , Pré-Escolar , Doença Crônica , Estudos Transversais , Feminino , Humanos , Masculino , Pediatria , Percepção , Estudos Prospectivos , Autorrelato , Índice de Gravidade de Doença , Estados Unidos , Adulto Jovem
8.
Am Heart J ; 170(1): 87-95, 95.e1-4, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-26093868

RESUMO

OBJECTIVE: The aim of the study was to determine the relation between online health information seeking behavior and anxiety level among a sample of patients with manifested cardiomyopathy or at risk for cardiomyopathy. METHODS: The research is a cross-sectional study conducted among 104 patients with cardiomyopathy diagnosis and patients at risk for cardiomyopathy. Patients completed 3 different questionnaires: Use of Internet Health Information questionnaire about the use of Internet, Short Form SF-12 items questionnaire on quality of life, and State-Trait Anxiety Inventory measuring general anxiety levels. RESULTS: Forty-eight patients had a diagnosis of primary or secondary cardiomyopathy, and 56 patients, with conditions predisposing to cardiomyopathy. Eighty-five percent of the considered population is surfing the Internet to obtain nonspecific information about health in general, and the 65% use it to look specifically for heart disease. For both groups of patients with cardiomyopathy and at risk for cardiomyopathy, online health information seeking behavior is associated with substantially lower state anxiety levels (P = .041). CONCLUSION: Web use, as a source of health information, has been shown to be associated with anxiety reduction in patients with or at risk for cardiomyopathy, suggesting that Internet technology can be a useful instrument due to its informational power and its potentially therapeutic value.


Assuntos
Ansiedade/psicologia , Cardiomiopatias/psicologia , Informação de Saúde ao Consumidor/estatística & dados numéricos , Comportamento de Busca de Informação , Internet/estatística & dados numéricos , Adulto , Ansiedade/epidemiologia , Cardiomiopatias/epidemiologia , Estudos Transversais , Feminino , Humanos , Itália/epidemiologia , Masculino , Pessoa de Meia-Idade , Risco , Inquéritos e Questionários
9.
Pediatr Cardiol ; 36(3): 516-23, 2015 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-25287220

RESUMO

As our ability to diagnosis cardiomyopathy matures and genetic testing becomes more widespread, there has been an increase in the number of children followed for cardiomyopathy. The purpose of this study was to compare health-related quality of life (HRQoL) between children with cardiomyopathy and healthy controls and with children seen in clinic who are at risk for the development of cardiomyopathy. Patient and parent-proxy perspectives were obtained using the Pediatric Quality of Life Inventory (PedsQL(TM)) 4.0 Core Scales (ages 2-18 years) and the disease-specific Cardiac Module. Cardiomyopathy physicians' perceptions of the impact of cardiomyopathy on the functional status of the patients were collected. In addition, data regarding disease-specific medical and socioeconomic information were collected from chart review and parental report. The questionnaires were completed by 100 parent-proxies and 71 children. The PedsQL(TM) scores reported by children and their parent-proxies were compared to scores reported by pediatric norms. Compared to healthy controls, patients followed in a pediatric cardiomyopathy clinic scored lower in Total score when compared to pediatric norms (80.7 vs 86.4, p = 0.002). Interestingly, children with a family history of cardiomyopathy who are at risk for developing the disease scored similar to those children with a diagnosis of cardiomyopathy. Parental and patients perceptions were discrepant when compared, which may deter appropriate referral to behavioral health services. These results should encourage cardiomyopathy clinics to screen all patients for HRQoL impairments and to have behavioral services available to assist these children.


Assuntos
Cardiomiopatias/psicologia , Nível de Saúde , Pais , Pediatria/métodos , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Qualidade de Vida , Fatores de Risco , Inquéritos e Questionários/normas
10.
J Card Fail ; 20(5): 378.e11-5, 2014 May.
Artigo em Inglês | MEDLINE | ID: mdl-25089314

RESUMO

Background: There are no well validated patient-reported disease status instruments for acute heart failure(HF). We assessed the feasibility of using the Kansas City Cardiomyopathy Questionnaire (KCCQ)during acute heart failure hospitalization, and the association of acute changes with 30-day readmission.Methods and Results: A convenience sample of acute HF patients were administered the KCCQ on presentation,discharge, and 30 days after discharge. We examined mean differences in KCCQ scores overtime, and we stratified by readmission status to examine differences in hospital-based changes with the use of t test and logistic regression. Among 52 patients (mean age 63 ± 15 years, 56.9% male, 46.2% white), discharge and 30-day assessments were each completed by 90%. Scores were lowest at presentation,improved during hospitalization, and were highest at 30 days. The mean change was +11.9 ± 27.0(P 5 .007) between presentation and discharge and +19.8 ± 17.8 (P <. .001) between discharge and 30 days. Within the 30-day follow-up, 10 patients were readmitted, and there were no significant differences in score changes during hospitalization between patients with and without readmission (readmitted patients: +4.8 ± 21.5 vs no readmission +16.2 ± 27.4; P = .32).Conclusions: In this pilot study, the KCCQ is feasible to use during acute HF hospitalizations and demonstrates sensitivity to acute changes, but score changes during hospitalization did not predict 30-day readmission.


Assuntos
Cardiomiopatias/diagnóstico , Serviço Hospitalar de Emergência/tendências , Insuficiência Cardíaca/diagnóstico , Alta do Paciente/tendências , Qualidade de Vida , Inquéritos e Questionários , Doença Aguda , Idoso , Cardiomiopatias/psicologia , Cardiomiopatias/terapia , Estudos de Coortes , Feminino , Insuficiência Cardíaca/psicologia , Insuficiência Cardíaca/terapia , Humanos , Kansas , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Qualidade de Vida/psicologia
11.
Transl Behav Med ; 14(6): 359-367, 2024 May 24.
Artigo em Inglês | MEDLINE | ID: mdl-38648182

RESUMO

Childhood cancer survivors have a higher risk of developing cardiomyopathy than members of the general population. Screening echocardiograms can facilitate early detection and treatment of cardiomyopathy. Furthermore, motivational interviewing can increase uptake of cardiac screening. However, such approaches are time- and resource-intensive, which limits their reach to the survivors who need them. We describe how we utilized a user-centered design process to translate an in-person motivational interviewing intervention into an eHealth tool to improve cardiac screening among childhood cancer survivors. We used an iterative, three-phase, user-centered design approach: (i) setting the stage (convening advisory boards and reviewing the original intervention), (ii) content programming and development (writing and programming intervention text and flow), and (iii) intervention testing (research team testing and cognitive interviews.) For cognitive interviews, participants were recruited via institutional participant registries and medical records. Data were analyzed using rapid qualitative analysis. During Phase 1, we identified survivor and provider advisors and outlined elements of the in-person intervention to change for the eHealth tool. During Phases 2 and 3, advisors recommended several modifications that guided the final intervention content and flow. Examples include: acknowledging potential hesitation or apprehension surrounding medical screenings, addressing barriers and facilitators to obtaining screening, and improving the tool's usability and appeal. In Phase 3, cognitive interview participants suggested additional refinements to the intervention language. This translation process shows that continued in-depth engagement of community advisors and iterative testing can improve the applicability of an eHealth to survivors' lived experiences and social contexts.


Childhood cancer survivors have a higher-than-average risk for developing heart damage compared to the general population. One-on-one interviews aimed at educating survivors about the importance of screening for heart damage can increase engagement in screening, but these programs are often too resource-intensive to be made available to large groups of survivors. Programs delivered using digital technology, like websites and smartphone apps, can be a more accessible alternative. In this article, we describe how we translated an in-person counseling program into a digital tool. We convened advisors who were childhood cancer survivors and healthcare providers to review the tool throughout the three-phase translation process: (i) setting the stage (convening advisory boards and reviewing original intervention), (ii) content programming and development (writing, and programming intervention text and flow), and (iii) intervention testing (research team testing and cognitive interviews.). Our translation process shows that continuously engaging with advisory boards and testing apps with participants can improve health programs in line with communities' diverse perspectives.


Assuntos
Sobreviventes de Câncer , Entrevista Motivacional , Telemedicina , Design Centrado no Usuário , Humanos , Entrevista Motivacional/métodos , Sobreviventes de Câncer/psicologia , Feminino , Masculino , Criança , Cardiomiopatias/terapia , Cardiomiopatias/psicologia , Adolescente , Neoplasias/psicologia , Neoplasias/terapia , Adulto
12.
MCN Am J Matern Child Nurs ; 47(4): 207-212, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35749765

RESUMO

PURPOSE: The purpose of this study was to explore the experiences of spouses whose wives had peripartum cardiomyopathy (PPCM). DESIGN METHODS: Participants were recruited for this phenomenological study through online sites Facebook and SavetheMommies. Fifteen men from four countries participated through semistructured phone interviews conducted between October 2019 and August 2020. Data were analyzed using a modified version of the constant comparison method. RESULTS: The overarching theme of spouses' experiences was Living with the 'what ifs' of persistent uncertainty. Four main themes were: Feeling the shock, Facing the challenge, Figuring out a new normal, and Finding meaning. Spouses had to deal with the fear of their wives' heart failure relapse or death, changed marital and parental roles, and unclear expectations of the future. CLINICAL IMPLICATIONS: PPCM is a rare complication of pregnancy with uncertain implications for the future that can have a profound impact on the woman's spouse and family. Our findings should alert nurses and other health care professionals to the need for emotional, spiritual, and informational support of spouses or partners of women who have PPCM. Nurses should include spouses and partners in care and communication to make sure they are as informed as possible, have their questions and concerns addressed as needed, and receive adequate follow-up support.


Assuntos
Cardiomiopatias , Transtornos Puerperais , Cardiomiopatias/complicações , Cardiomiopatias/psicologia , Feminino , Humanos , Masculino , Período Periparto , Gravidez , Pesquisa Qualitativa , Cônjuges/psicologia , Incerteza
13.
Am J Transplant ; 10(11): 2527-35, 2010 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-20977644

RESUMO

The objective of the study was to assess cognitive function and behavior in a group of children listed for heart and/or lung transplantation. Ninety-nine children (3.7-16.8 years) listed for heart and/or lung transplant for congenital heart disease (CHD), cardiomyopathy (CM), cystic fibrosis (CF) or primary pulmonary hypertension (PPH) were evaluated with standardized measures of cognitive function, academic ability and behavior. Results were compared with a historical cohort of healthy children and comparisons were made between the four diagnostic subgroups. Mean subtest scores, overall IQ and achievement scores were within the normal range for the total group but were significantly lower than those of the healthy group. Although there were few significant differences between the diagnostic subgroups children with CHD or CF tended to perform at a lower level than those with CM or PPH. There were some significant issues with behavior for all diagnostic subgroups, particularly in the domain of social competence. Patients with end-stage heart or lung disease are at increased risk for cognitive and/or behavioral problems, particularly those with CHD. Follow-up of these patients after transplant is important to determine the role that psychological functioning prior to surgery has in the longer term after surgery.


Assuntos
Cardiomiopatias/psicologia , Comportamento Infantil/psicologia , Transtornos Cognitivos/etiologia , Fibrose Cística/psicologia , Cardiopatias Congênitas/psicologia , Transplante de Coração-Pulmão/psicologia , Hipertensão Pulmonar/psicologia , Adolescente , Cardiomiopatias/cirurgia , Criança , Transtornos do Comportamento Infantil/psicologia , Pré-Escolar , Doença Crônica/psicologia , Cognição , Estudos Transversais , Fibrose Cística/cirurgia , Feminino , Cardiopatias Congênitas/cirurgia , Transplante de Coração , Humanos , Hipertensão Pulmonar/cirurgia , Inteligência , Transplante de Pulmão , Masculino , Comportamento Social
15.
Pacing Clin Electrophysiol ; 33(12): 1455-61, 2010 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-20946285

RESUMO

BACKGROUND: It is unclear whether depression persists in patients with implantable cardioverter defibrillators (ICDs). We evaluated the prevalence and persistence of depression in ICD patients over a 2-year period. METHODS: The study included 90 consecutively hospitalized patients. Patients underlying heart disease was 24% coronary artery disease, 29% idiopathic dilated cardiomyopathy, 24% hypertrophic cardiomyopathy, 13% idiopathic VF/long QT syndrome and miscellaneous conditions 11%. A secondary indication for ICD implantation was present in 20 patients. All patients completed the Zung Self-Rating Depression Scale (SDS) at study baseline and at the their routine follow-up visit 2 years after the baseline questionnaire. Delivery of ICD therapies was tracked throughout the 2 years. RESULTS: Depression, indicated by a Zung SDS index score exceeding 60, was present in 29 (32%) of patients at study baseline. Depression was present in 11/51 (21%) patients scheduled to undergo ICD implantation, 2/2 (100%) patients whose device was upgraded to a CRT-D, 3/14 (21%) patients who had undergone pulse generator replacement, 7/14 (50%) patients who experienced electrical storm and 6/9 (66%) patients hospitalized with acute decompensated heart failure. NYHA functional class III was significantly associated with depression at baseline (HR 6.7, 95% CI 1.68-27.2, p = 0.0007). No differences were noted for female gender, demographics, ß-blocker use, or LVEF ≤35% (p = ns). Depression was present in 25 (28%) of patients at 2 years follow-up, persisting in 21 (72%) of patients whose Zung SDS scores were elevated at baseline. The median time from ICD shock therapy to completion of the 2 year questionnaire was 9 months (range, 1-22). Patients who were depressed (9/25, 36%) experienced more shocks than non-depressed patients (6/65, 9%) after 2 years (p = 0.002). CONCLUSIONS: Depression is not uncommon among patients who meet criteria for ICD implantation and persists over time particularly when functional status is impaired. Depression is associated with a higher incidence shock therapy.


Assuntos
Desfibriladores Implantáveis/psicologia , Desfibriladores Implantáveis/estatística & dados numéricos , Depressão/epidemiologia , Doença Aguda/epidemiologia , Doença Aguda/psicologia , Antagonistas Adrenérgicos beta/uso terapêutico , Adulto , Idoso , Cardiomiopatias/tratamento farmacológico , Cardiomiopatias/epidemiologia , Cardiomiopatias/psicologia , Doença da Artéria Coronariana/tratamento farmacológico , Doença da Artéria Coronariana/epidemiologia , Doença da Artéria Coronariana/psicologia , Feminino , Insuficiência Cardíaca/tratamento farmacológico , Insuficiência Cardíaca/epidemiologia , Insuficiência Cardíaca/psicologia , Humanos , Incidência , Síndrome do QT Longo/tratamento farmacológico , Síndrome do QT Longo/epidemiologia , Síndrome do QT Longo/psicologia , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Prevalência , Volume Sistólico , Resultado do Tratamento
16.
BMC Public Health ; 10: 285, 2010 May 27.
Artigo em Inglês | MEDLINE | ID: mdl-20507602

RESUMO

BACKGROUND: Accruing evidence supports the hypothesis that psychosocial factors are related to cardiovascular disease. However, a limited number of studies have investigated the pathophysiologic pathways through which these associations occur. The purpose of this study was to assess whether experiences of self-reported racial discrimination and reactions to unfair treatment were associated with coronary artery calcification (CAC), an indicator of subclinical coronary heart disease (CHD). METHODS: This cross-sectional study recruited 571 subjects (45 years and older) who were asymptomatic of CHD from Fort Worth, Texas from 2006 to 2008. Subjects completed a questionnaire, a multi-slice computed tomography scan to assess for CAC presence (measured as Agatston score >0), and serum chemistries. Logistic regression was used to estimate odds ratios (ORs) and 95% confidence intervals (CIs) for the association between self-reported discrimination and CAC. Results were stratified by response to unfair treatment as it was found to significantly modify the relationship between discrimination and CAC. RESULTS: Among those who passively responded to unfair treatment, the odds of having CAC present were approximately 3 times higher for those experiencing discrimination (OR, 2.95; 95% CI, 1.19-7.32) after adjusting for age, gender, race/ethnicity, education, body mass index, hyperlipidemia, smoking status, hypertension, diabetes, and first degree relative with heart disease. CONCLUSIONS: This is the first multi-racial/ethnic study to find racial discrimination associated with CAC, which differs based on how one responds to unfair treatment.


Assuntos
Calcinose/etnologia , Calcinose/psicologia , Cardiomiopatias/etnologia , Cardiomiopatias/psicologia , Preconceito , Negro ou Afro-Americano/estatística & dados numéricos , Idoso , Calcinose/diagnóstico por imagem , Calcinose/epidemiologia , Cardiomiopatias/diagnóstico por imagem , Cardiomiopatias/epidemiologia , Estudos Transversais , Feminino , Hispânico ou Latino/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Razão de Chances , Análise de Regressão , Texas/epidemiologia , Tomografia Computadorizada por Raios X , População Branca/estatística & dados numéricos
17.
Comput Inform Nurs ; 28(4): 215-21, 2010.
Artigo em Inglês | MEDLINE | ID: mdl-20571373

RESUMO

Peripartum cardiomyopathy is a devastating condition in which women without a previously identified heart condition experience heart failure in the ninth month of pregnancy or in the first 5 months after delivery of a baby. Online support groups are virtual communities for people affected by the same social or health issue. No literature exists on the benefits of women involved in an online support group for peripartum cardiomyopathy. The purpose of this descriptive study was to determine the benefits of participation in the online support group for peripartum cardiomyopathy based on a survey of active members of the group. All contacts between researchers and respondents were through e-mail. A survey of open-ended and Likert-type questions was used. Twelve women, aged 19 to 34 years, participated; all had a diagnosis of peripartum cardiomyopathy. This online support group is a vital resource for women with peripartum cardiomyopathy. Benefits to participation in the online support group included getting and sharing information, exchanging stories, being understood by other women, and gaining hope. Nurse practice implications include referring patients to reputable Web sites and support groups and serving as a professional facilitator in an online group.


Assuntos
Atitude Frente a Saúde , Cardiomiopatias/psicologia , Internet/organização & administração , Complicações Cardiovasculares na Gravidez/psicologia , Transtornos Puerperais/psicologia , Grupos de Autoajuda/organização & administração , Adaptação Psicológica , Adulto , Atitude Frente aos Computadores , Feminino , Humanos , Solidão/psicologia , Papel do Profissional de Enfermagem , Pesquisa Metodológica em Enfermagem , Ohio , Educação de Pacientes como Assunto , Gravidez , Encaminhamento e Consulta , Apoio Social , Inquéritos e Questionários
18.
J Am Coll Cardiol ; 76(20): 2379-2390, 2020 11 17.
Artigo em Inglês | MEDLINE | ID: mdl-33183512

RESUMO

To improve the patient-centeredness of care, patient-reported outcomes have been increasingly used to quantify patients' symptoms, function, and quality of life. In heart failure, the Kansas City Cardiomyopathy Questionnaire (KCCQ) has been qualified by the U.S. Food and Drug Administration as a Clinical Outcome Assessment and recommended as a performance measure for quantifying the quality of care. By systematically asking the same questions reproducibly over time, the KCCQ can validly and sensitively capture the impact of heart failure on patients' lives and is strongly associated with clinical events over time. This review describes how to interpret the KCCQ, how it should be analyzed in clinical trials to maximize the interpretability of results, and how it can be used in clinical practice and population health. By providing a deeper understanding of the KCCQ, it is hoped that its use can further improve the patient-centeredness of heart failure care.


Assuntos
Cardiomiopatias/terapia , Medidas de Resultados Relatados pelo Paciente , Cardiomiopatias/psicologia , Ensaios Clínicos como Assunto , Humanos , Inquéritos e Questionários
19.
Prog Transplant ; 30(1): 63-66, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31876252

RESUMO

There is a high prevalence of depression among left ventricular assist device patients, who present with an increased risk of suicidality given access to means via the device either with nonadherence or disconnection. Suicidality via device nonadherence/disconnection is an underresearched clinical issue, as paradoxically this life-saving procedure can also provide a method of lethal means to patients with significant mental health concerns. A case study is used to highlight the course of an attempted suicide by ventricular assistive device nonadherence. Clinical implications and recommendations for practice include a thorough psychological evaluation presurgery, monitoring quality of life and coping styles before and after placement, psychological testing, outlining specific suicide protocols, psychiatric care considerations for patients with highly specialized medical devices, and related ethical concerns.


Assuntos
Cardiomiopatias/terapia , Coração Auxiliar , Cooperação do Paciente , Ideação Suicida , Cardiomiopatias/psicologia , Humanos , Masculino , Pessoa de Meia-Idade
20.
MCN Am J Matern Child Nurs ; 45(3): 176-182, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32341249

RESUMO

PURPOSE: Peripartum cardiomyopathy, a traumatic life-threatening type of heart failure, occurs in the last trimester of pregnancy or shortly after childbirth. Little is known about psychological or emotional conditions women experience with peripartum cardiomyopathy. The purpose of this study was to examine relationships among post-traumatic stress, depression, and quality of life in women with peripartum cardiomyopathy. DESIGN AND METHODS: This cross-sectional, correlational survey study included 28 participants recruited via public notice on Facebook. Participants completed the Horowitz Impact of Events Scale, the Center for Epidemiology Scale-Depression 20, and the Ferrans & Powers Quality of Life Index-Cardiac Version-IV. RESULTS: Post-traumatic stress correlated significantly and positively with depression (r = .809, p < .001). Post-traumatic stress and depression correlated significantly and inversely with quality of life (r = -.455, p = .015), (r = -.544, p = .003), respectively. All participants measured positive for depression. Participants with lower education scored higher on post-traumatic stress and depression, whereas those unemployed or disabled registered a lower quality of life. CLINICAL IMPLICATIONS: Nurses, midwives, and physicians caring for women with cardiomyopathies must be vigilant for evidence of post-traumatic stress, depression, and poor quality of life. Targeted antenatal and postnatal support could be vital to emotional and psychological recovery.


Assuntos
Cardiomiopatias/complicações , Período Periparto , Qualidade de Vida/psicologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Adulto , Cardiomiopatias/psicologia , Correlação de Dados , Estudos Transversais , Feminino , Humanos , Pessoa de Meia-Idade , Gravidez , Transtornos de Estresse Pós-Traumáticos/etiologia , Inquéritos e Questionários
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