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2.
Qual Life Res ; 29(8): 2111-2118, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32180099

RESUMO

PURPOSE: To assess the dynamic of various health-related quality of life (HRQoL) parameters 3 years after pulmonary thromboendarterectomy (PTE), and to identify factors affecting HRQoL parameters in patients with chronic thromboembolic pulmonary hypertension (CTEPH) in the long-term follow-up after surgery. METHODS: This prospective cohort study included 128 patients with CTEPH before and after the PTE (3 year follow-up). The HRQoL was examined using the Short-Form 36 Health Survey Questionnaire (SF-36). RESULTS: In patients with CTEPH 3 years after PTE, a significant improvement in all the HRQoL parameters. The summary indicators of the physical and mental components of health remained at the same level as 1 year after the PTE and did not exceed 50 points. The residual pulmonary hypertension was a leading factor limiting parameters of physical and mental health 3 years after a PTE. In addition, the parameters of physical activity were adversely affected by age and the age-adjusted Charlson Comorbidity Index. CONCLUSIONS: In the study group of patients with CTEPH, PTE contributes to a significant improvement in all HRQoL parameters, which observed both 1 year and 3 years after surgery. The leading factor adversely affecting the physical and emotional components of health in the long-term period after PTE was residual pulmonary hypertension recorded in the early postoperative period. In addition, some physical HRQoL parameters are affected by age and age-adjusted Charlson Comorbidity Index.


Assuntos
Hipertensão Pulmonar/cirurgia , Embolia Pulmonar/cirurgia , Adulto , Doença Crônica , Estudos de Coortes , Feminino , Humanos , Hipertensão Pulmonar/psicologia , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Embolia Pulmonar/psicologia , Qualidade de Vida/psicologia , Resultado do Tratamento
3.
Pneumologie ; 73(11): 677-685, 2019 Nov.
Artigo em Alemão | MEDLINE | ID: mdl-31715636

RESUMO

BACKGROUND: Pulmonary hypertension (PH) is defined as an elevation of mean pulmonary-arterial pressure by > 20 mmHg at rest, which may lead to right heart failure. Physical exercise has not been regularly recommended for PH patients for fear of symptom deterioration or occurrence of exercise-induced adverse events. METHODS: Three electronic databases were searched for randomized, controlled trials investigating exercise training in PH patients using the following keywords: "pulmonary hypertension" OR "pulmonary arterial hypertension" AND "exercise" OR "pulmonary rehabilitation" AND "randomized". RESULTS: Five studies involving 187 PH patients were included in this systematic review. Exercise programs lasted for 3 - 12 weeks (e. g. endurance training for 10 - 45 minutes; 60 - 80 % of the peak heart rate). PH patients significantly improved exercise capacity compared to controls in 6-minute walk distance (+ 45 m; 95 % CI: 26 m - 64 m) or peak oxygen consumption (+ 2.3 ml/kg/min; 95 % CI: 1.8 - 2.9 ml/kg/min), both p < 0.001. Also, physical and mental quality of life improved significantly by exercise training. No exercise-induced adverse events were observed. CONCLUSION: Supervised exercise training can safely and significantly improve physical performance and quality of life in clinically stable PH patients with optimal drug treatment. However, larger studies including a wider range of PH are mandatory.


Assuntos
Terapia por Exercício/métodos , Tolerância ao Exercício , Exercício Físico , Hipertensão Pulmonar/terapia , Ensaios Clínicos Controlados Aleatórios como Assunto , Humanos , Hipertensão Pulmonar/psicologia , Aptidão Física , Qualidade de Vida/psicologia , Resultado do Tratamento
4.
Acta Clin Croat ; 58(1): 3-12, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31363319

RESUMO

Pulmonary hypertension (PH) is a chronic disease which severely impairs quality of life (QoL). The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) is the first disease-specific tool to assess patient-reported symptoms, functioning and QoL in PH patients. The aim of this study was to adapt and validate the CAMPHOR for use in Croatia. The adaptation process involved three stages: translation (bilingual and lay panel), cognitive debriefing interviews with patients and psychometric validation. For the latter stage, a postal survey was conducted with 50 patients to examine the reliability and validity of the adapted scale. All three scales of the Croatian CAMPHOR demonstrated excellent internal consistency (Symptoms = 0.93; Activity limitations = 0.94; QoL = 0.92) and test-retest reliability correlations (Symptoms = 0.90; Activity limitations = 0.95; QoL = 0.90). Predicted correlations with the SF-36 scales provided evidence for construct validity of the CAMPHOR scales. Evidence for known group validity was shown by the ability of the scales to distinguish between participants based on patient-perceived general health and disease severity. The Croatian version of the CAMPHOR is a valid and reliable tool for use in clinical routine and clinical research.


Assuntos
Hipertensão Pulmonar/psicologia , Qualidade de Vida/psicologia , Índice de Gravidade de Doença , Inquéritos e Questionários/normas , Atividades Cotidianas/psicologia , Adaptação Fisiológica , Adulto , Idoso , Croácia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde , Reprodutibilidade dos Testes , Tradução
5.
J Bras Pneumol ; 45(6): e20180332, 2019 Jul 29.
Artigo em Inglês, Espanhol | MEDLINE | ID: mdl-31365733

RESUMO

OBJECTIVE: To conduct a cross-cultural adaptation of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) as an instrument to evaluate the perception of symptoms, functional limitation, and health-related quality of life (HRQoL) in subjects diagnosed with pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH) in Colombia. METHODS: The adaptation process involved 3 phases: translation, cognitive debriefing interviews, and a validation survey. To evaluate the psychometric properties, we recruited individuals ≥ 18 years of age who had been diagnosed with PAH or CTEPH to take part in the latter two stages of the adaptation process. All individuals were being followed on an outpatient basis by the pulmonary hypertension programs at Hospital Universitario San Ignacio, Fundación Clínica Shaio,and Clínicos IPS, all located in the city of Bogotá, Colombia. RESULTS: A Spanish-language version of the CAMPHOR was developed for use in Colombia. The internal consistency was excellent for the symptoms, functioning, and quality of life scales (Cronbach's alpha coefficients of 0.92, 0.87, and 0.93, respectively). Test-retest reliability was above 0.70. The evaluation of the convergent validity and known group validity of the CAMPHOR scales confirmed that there were moderate and strong correlations with the related constructs of the Medical Outcomes Study 36-item Short-Form Health Survey, version 2, as well as showing their capacity to discriminate disease severity. CONCLUSIONS: The Spanish-language version of the CAMPHOR developed for use in Colombia was the result of a translation and cultural adaptation process that allows us to consider it equivalent to the original version, having shown good psychometric properties in the study sample. Therefore, its use to assess the impact of interventions on the HRQoL of patients with PAH or CTEPH is recommended, in research and clinical practice.


Assuntos
Hipertensão Pulmonar/fisiopatologia , Embolia Pulmonar/fisiopatologia , Qualidade de Vida , Inquéritos e Questionários/normas , Adolescente , Adulto , Idoso , Colômbia , Comparação Transcultural , Feminino , Humanos , Hipertensão Pulmonar/psicologia , Idioma , Masculino , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo Paciente , Psicometria , Embolia Pulmonar/psicologia , Qualidade de Vida/psicologia , Valores de Referência , Reprodutibilidade dos Testes , Índice de Gravidade de Doença , Estatísticas não Paramétricas , Traduções , Adulto Jovem
6.
Lakartidningen ; 1162019 May 01.
Artigo em Sueco | MEDLINE | ID: mdl-31192407

RESUMO

For patients living with chronic conditions, the daily life will change due to symptoms, drug treatment, and psychosocial factors caused by the disease. Our studies show that Swedish patients with PAH or CTEPH are satisfied with the information they have received, but still have a wish for more. Therefore, it is important to repeat the information on a regular basis and to make sure that patients have understood and remember the messages. In order to increase the knowledge about their disease, improve compliance with treatment and quality of life, patients and next of kin should continuously be informed by the multidisciplinary team at the PAH/CTEPH-specialist care centers.


Assuntos
Hipertensão Pulmonar/psicologia , Educação de Pacientes como Assunto , Embolia Pulmonar/psicologia , Adolescente , Adulto , Distribuição por Idade , Idoso , Idoso de 80 Anos ou mais , Criança , Doença Crônica , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Hipertensão Pulmonar/epidemiologia , Masculino , Adesão à Medicação , Pessoa de Meia-Idade , Equipe de Assistência ao Paciente , Satisfação do Paciente , Embolia Pulmonar/epidemiologia , Qualidade de Vida , Distribuição por Sexo , Inquéritos e Questionários , Suécia/epidemiologia , Adulto Jovem
7.
Health Qual Life Outcomes ; 17(1): 103, 2019 Jun 14.
Artigo em Inglês | MEDLINE | ID: mdl-31200710

RESUMO

BACKGROUND: Pulmonary arterial hypertension (PAH) remains a life-threatening condition, despite modern therapies. We prospectively investigated the therapeutic health-related quality of life (HRQOL) effects of goal-oriented sequential combination therapy based on exercise capacity in patients newly diagnosed with PAH. METHODS: To examine the changes in HRQOL in PAH patients, we treated 30 patients newly diagnosed with PAH with goal-oriented sequential combination therapy based on exercise capacity. We monitored exercise capacity by cardiopulmonary exercise testing and observed the benefit of using a peak VO2 cut-off of 15 mL/kg/min to guide combination therapy. First-line treatment was an endothelin receptor antagonist (ERA); second-line treatment was the addition of a phosphodiesterase-5 inhibitor (PDE-5I). At baseline and at 3, 6, and 12 months, HRQOL was evaluated by using the eight-item Medical Outcomes Survey Short Form Health Survey. RESULTS: At 12 months, 100% of PAH patients were receiving an ERA, and 82% an ERA + PDE-5I. The mean physical component summary (PCS) score was 33.5 at baseline, 41.2 at 3 months, 40.8 at 6 months, and 42.0 at 12 months, and the mean mental component summary (MCS) scores were 45.6, 47.0, 50.0, and 50.1, respectively. PCS score was significantly greater at 3 months than at baseline (P = 0.035). MCS score was comparable at 3 months and at baseline, but was significantly greater at 6 and 12 months than at baseline (P = 0.033, P = 0.028, respectively). Thus, PCS score improved soon after initiation of therapy, and MCS score improved later. CONCLUSIONS: Together, these results suggest that goal-oriented sequential combination therapy based on exercise capacity improves HRQOL in patients with PAH.


Assuntos
Antagonistas dos Receptores de Endotelina/uso terapêutico , Exercício Físico , Hipertensão Pulmonar , Inibidores da Fosfodiesterase 5/uso terapêutico , Qualidade de Vida , Adulto , Terapia Combinada , Tolerância ao Exercício , Feminino , Humanos , Hipertensão Pulmonar/psicologia , Hipertensão Pulmonar/terapia , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários
8.
Eur Respir J ; 54(2)2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31073087

RESUMO

STUDY QUESTION: We investigated whether domiciliary oxygen therapy (DOXT) increases exercise capacity and quality of life in patients with pulmonary arterial or distal chronic thromboembolic pulmonary hypertension (PAH/CTEPH) presenting with mild resting hypoxaemia and exercise-induced oxygen desaturation. MATERIALS AND METHODS: 30 patients with PAH/CTEPH, mean±sd age 60±15 years, pulmonary artery pressure 39±11 mmHg, resting arterial oxygen saturation measured by pulse oximetry (S pO2 ) ≥90%, S pO2 drop during a 6-min walk test ≥4%, on pulmonary hypertension-targeted medication, were randomised in a double-blind crossover protocol to DOXT and placebo (ambient air) treatment, each over 5 weeks, at 3 L·min-1 via nasal cannula overnight and when resting during the day. Treatment periods were separated by 2 weeks of washout. Co-primary outcomes were changes in 6-min walk distance (6MWD, breathing ambient air) and physical functioning scale of the 36-item short-form medical outcome questionnaire during treatment periods. RESULTS: DOXT increased the 6MWD from baseline 478±113 m by a mean (95% CI) of 19 (6-32) m, and physical functioning from 52±29 by 4 (0-8) points. Corresponding changes with placebo were 1 (-11-13) m in 6MWD and -2 (-6-2) points in physical functioning. Between-treatment differences in changes were 6MWD 18 (1-35) m (p=0.042) and physical functioning 6 (1-11) points (p=0.029). DOXT significantly improved the New York Heart Association functional class versus placebo. ANSWER TO THE QUESTION: This first randomised trial in PAH/CTEPH patients with exercise-induced hypoxaemia demonstrates that DOXT improves exercise capacity, quality of life and functional class. The results support large long-term randomised trials of DOXT in PAH/CTEPH.


Assuntos
Tolerância ao Exercício , Hipertensão Pulmonar/fisiopatologia , Oxigenoterapia , Tromboembolia/fisiopatologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Doença Crônica , Estudos Cross-Over , Método Duplo-Cego , Feminino , Humanos , Hipertensão , Hipertensão Pulmonar/psicologia , Análise de Intenção de Tratamento , Masculino , Pessoa de Meia-Idade , Oximetria , Pressão , Artéria Pulmonar , Qualidade de Vida , Tromboembolia/psicologia , Resultado do Tratamento , Caminhada , Adulto Jovem
9.
Am Heart J ; 213: 91-96, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-31129442

RESUMO

BACKGROUND: Patients considering destination therapy left ventricular assist devices (DT LVAD) often have high comorbid burden but the association between these comorbidities and post-decision outcomes is unknown. METHODS: We included subjects in DECIDE-LVAD (NCT02344576), a stepped-wedge multicenter trial of patients considering LVADs, recording comorbidities per INTERMACS protocol. We compared decisional conflict, regret, perceived stress, quality of life (EQ-VAS), depression (PHQ-2), struggle with- and acceptance of illness by comorbid burden and amongst the most common comorbidities. RESULTS: Of 239 patients, LVAD recipients (n = 164) and non-recipients (n = 75) had a similar proportion with ≥1 comorbidity (70% v. 80%, P = .09). Patients with comorbidities were younger regardless of LVAD implantation status. After adjusting for age, overall and amongst LVAD recipients, patients with ≥1 comorbidity had higher mean decision conflict at baseline (23.2 ±â€¯1.5 vs. 17.4 ±â€¯2.2), and at 6 months, higher stress (13.0 ±â€¯0.6 vs. 10.4 ±â€¯1.0) and struggle with illness (13.3 ±â€¯0.4 vs. 11.1 ±â€¯0.6) than those without comorbidities (P < .05). No difference was noted in decision regret, PHQ-2, EQ-VAS, acceptance of illness and survival overall and amongst LVAD recipients. Of the three most common comorbidities, while patients with pulmonary hypertension had worse decision regret, depression, stress and acceptance of illness at 6-month follow-up than those who did not have pulmonary hypertension, no difference was noted in patients with chronic renal disease or high body mass index. CONCLUSION: Patients considering LVAD implantation with comorbidities experience increased decision conflict, stress and struggle with illness. These findings provide insights in the role comorbidities play in patient decision-making and decisional outcomes.


Assuntos
Conflito Psicológico , Emoções , Insuficiência Cardíaca/psicologia , Insuficiência Cardíaca/terapia , Coração Auxiliar/psicologia , Implantação de Prótese/psicologia , Adaptação Psicológica , Fatores Etários , Idoso , Índice de Massa Corporal , Comorbidade , Contraindicações de Procedimentos , Tomada de Decisão Compartilhada , Feminino , Seguimentos , Inquéritos Epidemiológicos , Insuficiência Cardíaca/epidemiologia , Coração Auxiliar/estatística & dados numéricos , Humanos , Hipertensão Pulmonar/epidemiologia , Hipertensão Pulmonar/psicologia , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Insuficiência Renal Crônica/epidemiologia , Insuficiência Renal Crônica/psicologia , Estresse Psicológico , Fatores de Tempo , Escala Visual Analógica
10.
BMC Pulm Med ; 19(1): 67, 2019 Mar 21.
Artigo em Inglês | MEDLINE | ID: mdl-30898139

RESUMO

BACKGROUND: Pulmonary Hypertension Association UK (PHA-UK) is the only charity in the UK especially for people affected by pulmonary hypertension (PH). To better understand the impact of PH on patients and carers beyond clinical symptoms, the PHA-UK carried out a cross-sectional survey on the effect of PH on daily living, along with a follow-up survey assessing the financial impact of PH. METHODS: This is a descriptive cross-sectional survey of adult patients with PH in the UK. A quantitative survey of four key topics (time to diagnosis, quality of life [QoL], financial impact and specialist treatment), was made available to PHA-UK members and patients on PH therapy, with a follow-up financial impact survey sent to those responders who agreed to be contacted further. Data collection was carried out in January and February 2017 for the main survey, and November and December 2017 for the financial impact survey. RESULTS: The main survey was completed by 567 individuals, and the financial follow-up survey by 171. Mean age of responders was 69 ± 17 years with 70% female. 60% of respondents said PH had a major impact on their QoL, with 45% reporting that treatment and management improves their QoL 'a lot'. The time between first experiencing symptoms and diagnosis was ≥1 year for 48% of patients, with 40% seeing 4+ doctors before diagnosis. 63% of patients reported financial worries. Patients in part-time and full-time work reported the greatest financial burden, with a 13 and 33% fall in monthly income respectively. Patients had positive experiences of treatment in specialist centres, with 62% rating their care 'excellent', and 92% saying they preferred travelling to a specialist centre rather than seeing a local non-specialist. CONCLUSIONS: This study reports the largest UK survey exploring issues affecting patients with PH. The study shows that despite the availability of new therapies, patients are still experiencing delays prior to diagnosis, and experiencing both emotional and financial impacts from the disease. By identifying the areas patients find most important in their treatment, this research can inform future care policies and long-term management to support patients living with PH and their families.


Assuntos
Hipertensão Pulmonar/economia , Hipertensão Pulmonar/psicologia , Satisfação do Paciente/estatística & dados numéricos , Qualidade de Vida/psicologia , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Diagnóstico Tardio , Assistência à Saúde/normas , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Inquéritos e Questionários , Reino Unido
11.
J Eval Clin Pract ; 25(5): 896-902, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-30793455

RESUMO

RATIONALE, AIMS, AND OBJECTIVES: The aim of the study was to evaluate the reliability and validity of the Turkish version of the EmPHasis-10 questionnaire to ensure cultural adaptation. METHODS: This study involved translation, back translation, and cross-cultural adaptation. One hundred and one patients who were diagnosed as having pulmonary hypertension (PH) for at least 6 months were evaluated using the Turkish version of EmPHasis-10. Turkish version of the Minnesota Living with Heart Failure Questionnaire (MLHFQ) was used as gold standard to assess the validation of the Turkish version of the EmPHasis-10 questionnaire. Relationship between MLHFQ and EmPHasis-10 was analysed using Spearman correlation analysis to assess the validation. Cronbach alpha (internal consistency) and exploratory factor analyses were used to assess the questionnaire's reliability. RESULTS: The statistical analysis showed that the EmPHasis-10 questionnaire showed a high validity with MLHFQ (r = 0.85) (P = 0.001). Reliability analysis showed that EmPHasis-10 had a high level of Cronbach alpha (α = 0.98) and internal consistency (ICC = 0.97). CONCLUSIONS: The Turkish version of EmPHasis-10 is a quality of life questionnaire specific to PH. It has a high-level validity and reliability questionnaire that can be used by researchers and physicians.


Assuntos
Hipertensão Pulmonar , Psicometria , Qualidade de Vida , Traduções , Adulto , Competência Cultural , Avaliação da Deficiência , Análise Fatorial , Feminino , Humanos , Hipertensão Pulmonar/diagnóstico , Hipertensão Pulmonar/epidemiologia , Hipertensão Pulmonar/psicologia , Masculino , Pessoa de Meia-Idade , Psicometria/métodos , Psicometria/normas , Reprodutibilidade dos Testes , Inquéritos e Questionários , Turquia/epidemiologia
12.
Respir Physiol Neurobiol ; 261: 40-47, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30630111

RESUMO

We aimed to assess detailed ventilatory and sensory responses to exercise contrasting subjects with and without PAH. 20 non-smoking patients with PAH (37.5 ± 12.1 ys; FEV1/FVC = 0.77 ± 0.04; mPAP by heart catheterization = 50.6 ± 18.1 mmHg) and 10 matched controls performed cycling cardiopulmonary exercise test with serial assessments of dyspnea, airway occlusion pressure during the first 0.1 s (P0.1) of tidal volume and inspiratory capacity (IC). Patients showed lower spirometric variables compared to controls. Dyspnea and ventilation (VE) were significantly higher in patients for a given work rate. Dyspnea persisted more intense in patients even when expressed as a function of VE. Lower IC at rest (in non-hyperinflators; n = 10) or exercise-induced reduction in IC (in hyperinflators) predisposed patients to achieve earlier and at lower workloads a critical inspiratory reserve volume (IRV). At this point, there was a sudden rise in P0.1 and dyspnea perception. Attainment of a critical IRV at premature workloads leads to neuromechanical dissociation with an abrupt increment in exertional dyspnea.


Assuntos
Dispneia/fisiopatologia , Dispneia/psicologia , Exercício Físico/fisiologia , Hipertensão Pulmonar/fisiopatologia , Hipertensão Pulmonar/psicologia , Respiração , Adulto , Estudos Transversais , Teste de Esforço , Feminino , Humanos , Masculino , Percepção , Estudos Prospectivos , Testes de Função Respiratória , Músculos Respiratórios/fisiopatologia , Sensação
13.
Eur Respir J ; 53(2)2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30578391

RESUMO

Objectives of this European Respiratory Society task force were to summarise current studies, to develop strategies for future research and to increase availability and awareness of exercise training for pulmonary hypertension (PH) patients.An evidence-based approach with clinical expertise of the task force members, based on both literature search and face-to-face meetings was conducted. The statement summarises current knowledge and open questions regarding clinical effects of exercise training in PH, training modalities, implementation strategies and pathophysiological mechanisms.In studies (784 PH patients in total, including six randomised controlled trials, three controlled trials, 10 prospective cohort studies and four meta-analyses), exercise training has been shown to improve exercise capacity, muscular function, quality of life and possibly right ventricular function and pulmonary haemodynamics. Nevertheless, further studies are needed to confirm these data, to investigate the impact on risk profiles and to identify the most advantageous training methodology and underlying pathophysiological mechanisms.As exercise training appears to be effective, cost-efficient and safe, but is scarcely reimbursed, support from healthcare institutions, commissioners of healthcare and research funding institutions is greatly needed. There is a strong need to establish specialised rehabilitation programmes for PH patients to enhance patient access to this treatment intervention.


Assuntos
Terapia por Exercício/métodos , Hipertensão Pulmonar/reabilitação , Pneumologia/normas , Reabilitação/métodos , Doença Crônica , Ecocardiografia , Europa (Continente)/epidemiologia , Medicina Baseada em Evidências , Hemodinâmica , Humanos , Hipertensão Pulmonar/psicologia , Comunicação Interdisciplinar , Segurança do Paciente , Qualidade de Vida , Reabilitação/normas , Risco , Resultado do Tratamento
14.
Eur Respir J ; 53(1)2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-30545977

RESUMO

The assessment of objective measurement of cardiopulmonary status has helped us achieve better clinical outcomes for patients and develop new therapies through to the point of market access; however, patient surveys indicate that more can be done to improve holistic care and patient engagement. In this multidisciplinary review, we examine how clinical teams can acknowledge and embrace the individual patient's perspective, and thus improve the care for individual patients suffering from pulmonary hypertension by cultivating the importance and relevance of health-related quality of life in direct clinical care. At the individual level, patients should be provided with access to accredited specialist centres which provide a multidisciplinary approach where there is a culture focused on narrative medicine, quality of life, shared decision making and timely access to palliative care, and where there is participation in education. On a larger scale, we call for the development, expansion and promotion of patient associations to support patients and carers, lobby for access to best care and treatments, and provide input into the development of clinical trials and registries, focusing on the patients' perspective.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Hipertensão Pulmonar/psicologia , Participação do Paciente , Qualidade de Vida/psicologia , Humanos , Hipertensão Pulmonar/terapia , Cuidados Paliativos/métodos
15.
J. bras. pneumol ; 45(6): e20180332, 2019. tab, graf
Artigo em Inglês | LILACS | ID: biblio-1012579

RESUMO

ABSTRACT Objective: To conduct a cross-cultural adaptation of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) as an instrument to evaluate the perception of symptoms, functional limitation, and health-related quality of life (HRQoL) in subjects diagnosed with pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH) in Colombia. Methods: The adaptation process involved 3 phases: translation, cognitive debriefing interviews, and a validation survey. To evaluate the psychometric properties, we recruited individuals ≥ 18 years of age who had been diagnosed with PAH or CTEPH to take part in the latter two stages of the adaptation process. All individuals were being followed on an outpatient basis by the pulmonary hypertension programs at Hospital Universitario San Ignacio, Fundación Clínica Shaio,and Clínicos IPS, all located in the city of Bogotá, Colombia. Results: A Spanish-language version of the CAMPHOR was developed for use in Colombia. The internal consistency was excellent for the symptoms, functioning, and quality of life scales (Cronbach's alpha coefficients of 0.92, 0.87, and 0.93, respectively). Test-retest reliability was above 0.70. The evaluation of the convergent validity and known group validity of the CAMPHOR scales confirmed that there were moderate and strong correlations with the related constructs of the Medical Outcomes Study 36-item Short-Form Health Survey, version 2, as well as showing their capacity to discriminate disease severity. Conclusions: The Spanish-language version of the CAMPHOR developed for use in Colombia was the result of a translation and cultural adaptation process that allows us to consider it equivalent to the original version, having shown good psychometric properties in the study sample. Therefore, its use to assess the impact of interventions on the HRQoL of patients with PAH or CTEPH is recommended, in research and clinical practice.


RESUMEN Objetivo: Realizar la adaptación transcultural del cuestionario Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) como instrumento para evaluar la percepción de síntomas, la limitación funcional y la calidad de vida relacionada con la salud (CVRS) en una población colombiana de sujetos con diagnóstico de hipertensión arterial pulmonar (HAP) e hipertensión pulmonar tromboembólica crónica (HPTEC). Métodos: Estudio de validación de pruebas de determinación de precisión y propiedades psicométricas desarrollado en 3 fases: traducción con adaptación cultural mediante panel bilingüe, aplicación inicial y general para la evaluación de características psicométricas en una cohorte de pacientes > 18 años, con diagnóstico de HAP e HPTEC, en seguimiento por consulta externa de programas de hipertensión pulmonar del Hospital Universitario San Ignacio, Fundación Clínica Shaio y Clínicos IPS. Resultados: Se obtuvo una versión en castellano de la escala CAMPHOR. La consistencia interna observada para los dominios de síntomas, actividades y calidad de vida (valores del coeficiente alfa de Cronbach de 0,92, 0,87 y 0,93 respectivamente) fue adecuada. La confiabilidad prueba-reprueba estuvo por encima de 0,70 y la evaluación de la validez convergente y de grupos conocidos de las subescalas confirmó las correlaciones moderadas y fuertes con constructos relacionados del SF36v2, así como la capacidad discriminatoria según la severidad de la enfermedad. Conclusiones: La versión en castellano de la escala CAMPHOR presentó un proceso de traducción lingüística y adaptación cultural que permite considerarla equivalente a la versión original, demostrando adecuadas propiedades psicométricas en la muestra estudiada. Por ello se recomienda su utilización tanto en la investigación como en la práctica clínica, con el fin de evaluar el impacto de las intervenciones en la CVRS.


Assuntos
Humanos , Masculino , Feminino , Adolescente , Adulto , Pessoa de Meia-Idade , Idoso , Adulto Jovem , Embolia Pulmonar/fisiopatologia , Inquéritos e Questionários/normas , Hipertensão Pulmonar/fisiopatologia , Psicometria , Embolia Pulmonar/psicologia , Qualidade de Vida/psicologia , Valores de Referência , Traduções , Índice de Gravidade de Doença , Comparação Transcultural , Reprodutibilidade dos Testes , Colômbia , Estatísticas não Paramétricas , Medidas de Resultados Relatados pelo Paciente , Hipertensão Pulmonar/psicologia , Idioma
16.
Vasc Health Risk Manag ; 14: 349-360, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30510427

RESUMO

Background: Anxiety and depression are frequent disorders in patients with pulmonary arterial hypertension (PAH), but despite this only less than one-fourth of them is treated. Our aim was to review the studies regarding the prevalence and the impact of anxiety and depression and to propose management challenges. Methods: A literature review regarding 1) anxiety and depression studies in PAH patients and caregivers, 2) psychological interventions, 3) slow breathing approach, and 4) pharmacological approach was performed, based on evidence of effectiveness through a search of the most well-known databases (Cochrane Library, Medline, PsychINFO [2004-2018]). Results: The prevalence of mental disorders in PAH patients lies between 7.5% and 53% for depression and 19% and 51% for anxiety and panic disorders. The latest guidelines of the European Society of Cardiology recommend a psychological support with a class of recommendation I and a level of evidence c. The analysis of psychological intervention shows that at present there is no evidence of specific psychological interventions in these patients. However, treatment approaches based on other chronic illnesses are suggested, especially based on relaxation training, slow breathing, and cognitive behavioral therapy. Finally, data concerning the use of antidepressant drugs are conflicting. Conclusion: Firstly, our data demonstrate a common underestimation of mental disorders by health professionals and secondly, the need of implementing appropriate methods of screening for mental disorders in PAH patients. However, the paucity of large observational studies in this area requires the attention of researchers. The evidence about optimal approaches for managing anxiety and depression in PAH also remains unclear and largely speculative. The challenge is the introduction of routine psychological intervention, as suggested by the European Society of Cardiology and already applied in other chronic disease.


Assuntos
Antidepressivos/uso terapêutico , Ansiedade/terapia , Exercícios Respiratórios , Terapia Cognitivo-Comportamental/métodos , Depressão/terapia , Hipertensão Pulmonar/terapia , Adaptação Psicológica , Adolescente , Adulto , Idoso , Ansiedade/diagnóstico , Ansiedade/epidemiologia , Ansiedade/psicologia , Cuidadores/psicologia , Criança , Pré-Escolar , Depressão/diagnóstico , Depressão/epidemiologia , Depressão/psicologia , Feminino , Humanos , Hipertensão Pulmonar/diagnóstico , Hipertensão Pulmonar/epidemiologia , Hipertensão Pulmonar/psicologia , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Prevalência , Fatores de Risco , Apoio Social , Resultado do Tratamento , Adulto Jovem
18.
Angiol Sosud Khir ; 24(3): 109-113, 2018.
Artigo em Russo | MEDLINE | ID: mdl-30321154

RESUMO

Analysed herein are the results of pulmonary endarterectomy (PEA) performed in a total of 169 patients presenting with chronic thromboembolic pulmonary hypertension (CTEPH) at the National Medical Research Centre named after Academician E.N. Meshalkin over the period from 2004 to 2014. Pulmonary endarterectomy was carried out according to the standard technique in the conditions of assisted circulation with the use of hypothermia and circulatory arrest. The duration of follow up of patients after surgical treatment amounted to 10 years. During the in-hospital period (30 postoperative days) and in the remote period after the intervention (averagely amounting to 7.7±2.3 years), the following parameters were evaluated: the clinical status of the patients by means of the SF-36 Quality of Life Questionnaire, the 6-minute walk test, as well as the findings of instrumental methods of study, namely, transthoracic echocardiography, multispiral computed angiography of the pulmonary artery (PA), catheterization of the right portions of the heart, perfusion scintigraphy of the lungs. The obtained results demonstrated that removal of thromboembolic obstruction of the PA was followed by significant improvement of intracardiac haemodynamics, volumetric-and-functional parameters of the right portions of the heart, pulmonary perfusion, accompanied by reverse remodelling of the right heart and lesser circulation (LC), which was manifested by a decrease in the following parameters: systolic and mean blood pressure in the PA, resistance of the LC vessels, total value of perfusion deficiency of the lung, as well as by a decrease in the dimensions of the right chambers of the heart and the diameter of the pulmonary trunk. Normalization of intracardiac haemodynamics resulted in improvement of the clinical and functional state of the patients both in the immediate and remote periods, which was confirmed by elevation of the scores on all scales of the SF-36 Quality of Life Questionnaire, a 2.25-fold increase in the distance walked over a span of 6 minutes, and a decrease in the functional class of chronic heart failure according to the NYHA classification. The obtained findings suggest high efficacy of performing PEA in patients with CTEPH, thus making it possible not only to prolong the lifespan of the patients but to increase their quality of life.


Assuntos
Endarterectomia , Insuficiência Cardíaca , Hipertensão Pulmonar , Artéria Pulmonar , Embolia Pulmonar/complicações , Qualidade de Vida , Angiografia/métodos , Ecocardiografia/métodos , Endarterectomia/efeitos adversos , Endarterectomia/métodos , Feminino , Insuficiência Cardíaca/diagnóstico , Insuficiência Cardíaca/etiologia , Humanos , Hipertensão Pulmonar/diagnóstico , Hipertensão Pulmonar/etiologia , Hipertensão Pulmonar/psicologia , Hipertensão Pulmonar/cirurgia , Pulmão/diagnóstico por imagem , Masculino , Pessoa de Meia-Idade , Tomografia Computadorizada Multidetectores/métodos , Imagem de Perfusão/métodos , Artéria Pulmonar/diagnóstico por imagem , Artéria Pulmonar/cirurgia , Estudos Retrospectivos , Sibéria/epidemiologia , Resultado do Tratamento
19.
Int J Cardiol ; 272S: 30-36, 2018 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-30190156

RESUMO

In the summer of 2016, delegates from the German Respiratory Society, the German Society of Cardiology and the German Society of Pediatric Cardiology met in Cologne, Germany, to define consensus-based practice recommendations for the management of patients with pulmonary arterial hypertension (PAH). These recommendations were built on the 2015 European Pulmonary Hypertension guidelines aiming at their practical implementation, considering country-specific issues, and including new evidence, where available. To this end, a number of working groups was initiated, one of which was specifically dedicated to general measures (i.e. physical activity/supervised rehabilitation, pregnancy/contraception, elective surgery, infection prevention, psychological support, travel) and supportive therapy (i.e. anticoagulants, diuretics, oxygen, cardiovascular medications, anaemia/iron deficiency, arrhythmias) for PAH. While the European guidelines provide detailed recommendations for the use of targeted PAH therapies as well as supportive care, detailed treatment decisions in routine clinical care may be challenging, and the relevance of supportive care is often not sufficiently considered. In addition, new evidence became available, thus requiring a thorough reevaluation of specific recommendations. The detailed results and recommendations of the working group on general measures and supportive therapy for PAH, which were last updated in the spring of 2018, are summarized in this article.


Assuntos
Conferências de Consenso como Assunto , Hipertensão Pulmonar/psicologia , Hipertensão Pulmonar/terapia , Cuidados Paliativos/normas , Guias de Prática Clínica como Assunto/normas , Alemanha/epidemiologia , Humanos , Hipertensão Pulmonar/epidemiologia , Hipertensão Pulmonar/fisiopatologia , Cuidados Paliativos/métodos
20.
Psychosomatics ; 59(6): 575-583, 2018 11.
Artigo em Inglês | MEDLINE | ID: mdl-29961653

RESUMO

BACKGROUND: Pulmonary hypertension is a highly disabling condition characterized by a progressive increase in pulmonary arterial pressure. Even though pulmonary hypertension may cause great emotional distress, research examining the determinants of patients' emotional well-being has been scarce and has mostly focused on the role of disease-related factors. OBJECTIVES: This study examined whether patients' emotional well-being may be effected by their life circumstances. METHODS: Sixty-four patients with pulmonary hypertension completed measures of symptoms of pulmonary hypertension, functional disability, depression and anxiety symptoms, life satisfaction, optimism, and quality of life (QoL). RESULTS: Clinically-significant symptoms of depression and anxiety were only accurately predicted in 50.5% and 56.5% of patients, respectively, based on disease severity alone. However, the addition of life satisfaction and optimism to the models improved the prediction of depressive and anxiety symptomatology. Further, symptoms of anxiety were a significant predictor of QoL, above and beyond disease severity. CONCLUSIONS: Patients with considerably different levels of disease severity may develop clinically-significant depressive and anxiety symptomatology. This suggests that there is not a perfect correspondence between the level of disease severity and the repercussions thereof across patients. Accordingly, these results suggest that emotional well-being may be better explained by taking into consideration patients' life circumstances, as these may modulate the repercussions of having pulmonary hypertension. The results also showed that anxiety symptoms constituted an extra burden to patients' QoL. The higher prevalence in this sample of clinically-significant symptoms of anxiety, compared to that of depression, suggest that feelings of fear and uncertainty may require special attention among patients with pulmonary hypertension.


Assuntos
Transtornos de Ansiedade/epidemiologia , Transtorno Depressivo/epidemiologia , Hipertensão Pulmonar/epidemiologia , Otimismo/psicologia , Satisfação Pessoal , Transtornos de Ansiedade/psicologia , Comorbidade , Transtorno Depressivo/psicologia , Feminino , Humanos , Hipertensão Pulmonar/psicologia , Masculino , Pessoa de Meia-Idade , Prevalência , Qualidade de Vida/psicologia , Espanha , Inquéritos e Questionários
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