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1.
JMIR Res Protoc ; 13: e55452, 2024 May 07.
Artigo em Inglês | MEDLINE | ID: mdl-38713508

RESUMO

BACKGROUND: Physical capacity and physical activity are important aspects of physical functioning and quality of life in people with a chronic disease such as Parkinson disease (PD) or chronic obstructive pulmonary disease (COPD). Both physical capacity and physical activity are currently measured in the clinic using standardized questionnaires and tests, such as the 6-minute walk test (6MWT) and the Timed Up and Go test (TUG). However, relying only on in-clinic tests is suboptimal since they offer limited information on how a person functions in daily life and how functioning fluctuates throughout the day. Wearable sensor technology may offer a solution that enables us to better understand true physical functioning in daily life. OBJECTIVE: We aim to study whether device-assisted versions of 6MWT and TUG, such that the tests can be performed independently at home using a smartwatch, is a valid and reliable way to measure the performance compared to a supervised, in-clinic test. METHODS: This is a decentralized, prospective, observational study including 100 people with PD and 100 with COPD. The inclusion criteria are broad: age ≥18 years, able to walk independently, and no co-occurrence of PD and COPD. Participants are followed for 15 weeks with 4 in-clinic visits, once every 5 weeks. Outcomes include several walking tests, cognitive tests, and disease-specific questionnaires accompanied by data collection using wearable devices (the Verily Study Watch and Modus StepWatch). Additionally, during the last 10 weeks of this study, participants will follow an aerobic exercise training program aiming to increase physical capacity, creating the opportunity to study the responsiveness of the remote 6MWT. RESULTS: In total, 89 people with PD and 65 people with COPD were included in this study. Data analysis will start in April 2024. CONCLUSIONS: The results of this study will provide information on the measurement properties of the device-assisted 6MWT and TUG in the clinic and at home. When reliable and valid, this can contribute to a better understanding of a person's physical capacity in real life, which makes it possible to personalize treatment options. TRIAL REGISTRATION: ClinicalTrials.gov NCT05756075; https://clinicaltrials.gov/study/NCT05756075. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/55452.


Assuntos
Doença de Parkinson , Doença Pulmonar Obstrutiva Crônica , Dispositivos Eletrônicos Vestíveis , Humanos , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/psicologia , Doença de Parkinson/fisiopatologia , Doença de Parkinson/diagnóstico , Estudos Prospectivos , Masculino , Idoso , Feminino , Teste de Caminhada/métodos , Pessoa de Meia-Idade , Estudos Observacionais como Assunto , Desempenho Físico Funcional , Qualidade de Vida
2.
Psychother Psychosom Med Psychol ; 74(5): 183-191, 2024 May.
Artigo em Alemão | MEDLINE | ID: mdl-38492567

RESUMO

Understanding trigger and maintaining factors regarding psychiatric comorbidities in COPD is of great importance. In the presented mixed-methods study, qualitative interview data on burden experience and coping were related to psychiatric comorbidity (using PHQ-D) and quality of live (Positive Affect Negative Affect Schedulde, PANAS and Satisfaction with Life Scale, SWLS) and extended by the Freiburg Questionnaire on Coping with Illness (FKV-LIS). The two interview questions prompting narrative were 1.) "What is currently bothering you most?"; 2.) "How do you cope with your chronic disease in everyday life?" A total of 62 patients who were hospitalized due to COPD participated. The severity of physical impairment was assessed using GOLD stage and the Charlson Comorbidity Index (CCI). The interviews conducted were content analyzed and then quantified. The collected data were then compared between two groups with regard to mental distress. 13 themes of burden and 11 coping strategies were identified by content analysis. A total of 42 patients showed signs of mental distress, while 20 patients did not show signs of distress. There were no significant differences between the two groups in terms of sociodemographic characteristics and the severity of their physical symptoms. In the first interview question, the stressed group more frequently addressed issues related to death (35.7% versus 15.0%) and social stress (21.4% versus 0.0%). With respect to the second interview question, the nonstressed group was significantly more likely to mention strategies for consciously emphasizing positive emotions (70.0% versus 31.0%). In addition, higher scores on the FKV scales for depressive coping and trivialization and wishful thinking were evident in the stressed group. Quality of life and mental distress should be considered in clinical care for COPD. Interventions to influence illness perception and related coping styles are important, especially with regard to the development of a realistic and optimistic perspective on life and disease burden, as well as the inclusion of group and family therapeutic interventions.


Assuntos
Adaptação Psicológica , Saúde Mental , Doença Pulmonar Obstrutiva Crônica , Qualidade de Vida , Humanos , Doença Pulmonar Obstrutiva Crônica/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Qualidade de Vida/psicologia , Efeitos Psicossociais da Doença , Inquéritos e Questionários , Comorbidade , Idoso de 80 Anos ou mais , Capacidades de Enfrentamento
3.
Patient Educ Couns ; 123: 108220, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38458089

RESUMO

OBJECTIVE: To compare the effect of motivational interviewing (MI) and tailored health literacy (HL) follow-up with usual care on hospitalization, costs, HL, self-management, Quality of life (QOL), and psychological stress in people with chronic obstructive pulmonary disease (COPD). METHODS: A RCT was undertaken in Norway between March 2018-December 2020 (n = 127). The control group (CG, n = 63) received usual care. The intervention group (IG, n = 64) received tailored HL follow-up from MI-trained COPD nurses with home visits for eight weeks and phone calls for four months after hospitalization. Primary outcomes were hospitalization at eight weeks, six months, and one year from baseline. The trial was registered with ClinicalTrials.gov (NCT03216603) and analysed per protocol. RESULTS: Compared with the IG, the CG had 2.8 higher odds (95% CI [1.3 to 5.8]) of hospitalization and higher hospital health costs (MD=€ -6230, 95% CI [-6510 to -5951]) and lower QALYs (MD=0.1, 95% CI [0.10 to 0.11]) that gives an ICER = - 62,300. The IG reported higher QOL, self-management, and HL (p = 0.02- to <0.01). CONCLUSION: MI-trained COPD nurses using tailored HL follow-up is cost-effective, reduces hospitalization, and increases QOL, HL, and self-care in COPD. PRACTICE IMPLICATION: Tailored HL follow-up is beneficial for individuals with COPD and the healthcare system.


Assuntos
Letramento em Saúde , Doença Pulmonar Obstrutiva Crônica , Autogestão , Humanos , Qualidade de Vida , Hospitalização , Custos de Cuidados de Saúde , Doença Pulmonar Obstrutiva Crônica/terapia , Doença Pulmonar Obstrutiva Crônica/psicologia
4.
Neuromuscul Disord ; 33(2): 187-195, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36669462

RESUMO

In myotonic mystrophy type 1 (DM1), combining respiratory symptom screening and respiratory function testing, is crucial to identify the appropriate time for ventilatory support initiation. Dyspnea has been little investigated in DM1. To provide a multidimensional description of dyspnea, questionnaires assessing dyspnea were administered to 34 consecutive adult patients with DM1 (median (25th-75th centile) age of 36 (28-49), Vital Capacity (VC) of 74 (64-87)% of predicted value). Dyspnea scores were low whatever the questionnaire used: Multidimensional Dyspnea Profile score of 2(0-4.7)/50 for dyspnea sensory descriptor and of 0 (0-4.7)/60 for the emotional descriptor, Visual Analogue Scale score of 0 (0-0)/10 in sitting and supine position and Borg score after six-minute walk test (6MWT) of 2.2 (1.8-4.2)/10. Eleven patients (32%) reported disabling dyspnea in daily living (modified Medical Research Council (mMRC) score ≥ 2). In comparison with patients with mMRC score < 2, patients with mMRC score ≥ 2 had a more severe motor handicap (Muscular Impairment Rating score of 4.0 (4.0-4.0) vs 3.0 (2.0-3.5), p<0.01), a lower 6MWT distance (373 (260-424) vs 436 (346-499)m, p = 0.03) and a lower VC (64 (48-74)% vs 75 (69-89)%, p = 0.02). These data suggest that the mMRC scale might be an easy-to-use and useful tool to assess dyspnea in daily living in DM1 patients. However, the interest of integrating the mMRC dyspnea scale in clinical practice to guide therapeutic management of DM1 patients remains to be assessed in further studies.


Assuntos
Distrofia Miotônica , Doença Pulmonar Obstrutiva Crônica , Adulto , Humanos , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/psicologia , Distrofia Miotônica/complicações , Distrofia Miotônica/diagnóstico , Índice de Gravidade de Doença , Dispneia/diagnóstico , Dispneia/etiologia , Capacidade Vital , Inquéritos e Questionários
5.
Chronic Illn ; 19(2): 327-338, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-34812655

RESUMO

OBJECTIVES: To examine the association between chronic obstructive pulmonary disease status and indicators of economic instability and stress to better understand the magnitude of these issues in persons with chronic obstructive pulmonary disease. METHODS: Analyzed 2017 Behavioral Risk Factor Surveillance System data from 16 states that administered the 'Social Determinants of Health' module, which included economic instability and stress measures (N = 101,461). Associations between self-reported doctor-diagnosed chronic obstructive pulmonary disease status and each measure were examined using multinomial logistic models. RESULTS: Adults with chronic obstructive pulmonary disease were more likely (p < 0.001) than adults without to report not having enough money at month end (21.0% vs. 7.9%) or just enough money (44.9% vs. 37.2%); being unable to pay mortgage, rent, or utility bills (19.2% vs. 8.8%); and that often or sometimes food did not last or could not afford to eat balanced meals (37.9% vs. 20.6%), as well as stress all or most of the time (27.3% vs. 11.6%). Associations were attenuated although remained significant after adjustments for sociodemographic and health characteristics. DISCUSSION: Financial, housing, and food insecurity and frequent stress were more prevalent in adults with chronic obstructive pulmonary disease than without. Findings highlight the importance of including strategies to address challenges related to economic instability and stress in chronic obstructive pulmonary disease management programs.


Assuntos
Estabilidade Econômica , Doença Pulmonar Obstrutiva Crônica , Determinantes Sociais da Saúde , Estresse Psicológico , Adulto , Humanos , Sistema de Vigilância de Fator de Risco Comportamental , Habitação/economia , Habitação/estatística & dados numéricos , Doença Pulmonar Obstrutiva Crônica/economia , Doença Pulmonar Obstrutiva Crônica/epidemiologia , Doença Pulmonar Obstrutiva Crônica/psicologia , Autorrelato , Estados Unidos/epidemiologia , Estresse Psicológico/epidemiologia , Determinantes Sociais da Saúde/economia , Determinantes Sociais da Saúde/estatística & dados numéricos , Insegurança Alimentar/economia
6.
Psychiatr Genet ; 32(3): 116-124, 2022 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-35102127

RESUMO

PURPOSE: Chronic obstructive pulmonary disease (COPD) is characterized by pulmonary and extra-pulmonary multi-morbidity including depression, anxiety and cognitive disorders. Several studies investigated the association of the FKBP5 gene polymorphisms with susceptibility to anxiety, depression, and behavioral disorders. The FKBP5 gene codifies the FKBP51 protein which modulates the glucocorticoid receptor in the adaptive stress response. Genetic variants of the FKBP5 gene have been associated to a higher risk of developing mental disorders. We analyzed the association of genetic variants and stress exposure investigating the susceptibility to psychological distress and the impact on cognitive balance and quality of life (QoL) of COPD patients carrying the rs4713916 polymorphism (G/A) and we examined its association, with COPD rehabilitative outcomes. MATERIALS AND METHODS: A pilot study evaluated cognitive, psychological, clinical alterations/disorders, QoL, and coping strategies in 70 older adults with COPD, undergoing pulmonary rehabilitation, stratified according to the FKBP5 rs4713916 genotype (GG or GA). RESULTS: Carriers of rs4713916 polymorphisms (G/A) show better cognitive performances, a higher degree of independence in the daily living activities, better QoL, no presence of depressive mood and anxiety symptoms, no family history of psychiatric disorders, more ability to cope with stressors by avoiding emotions but demanding emotional support, and lesser use of anti-anxiety, anti-depressant, anti-psychotic, hypnotic-sedative drugs. No difference was found in the number of comorbidities. CONCLUSION: These results offer valuable insights into the role of FKBP5 in the complex network of mechanisms associated to clinical, psychological and behavioral features of COPD patients.


Assuntos
Doença Pulmonar Obstrutiva Crônica , Qualidade de Vida , Proteínas de Ligação a Tacrolimo , Idoso , Cognição , Humanos , Projetos Piloto , Polimorfismo de Nucleotídeo Único/genética , Estudo de Prova de Conceito , Doença Pulmonar Obstrutiva Crônica/genética , Doença Pulmonar Obstrutiva Crônica/psicologia , Doença Pulmonar Obstrutiva Crônica/reabilitação , Proteínas de Ligação a Tacrolimo/genética
7.
COPD ; 18(4): 385-392, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-34156315

RESUMO

Computer-adaptive tests use respondents' answers to previous questions to select the subsequent questions. They are gaining popularity for their increased measurement precision and decreased administration time compared to static questionnaires. The purpose of this study was to estimate the test-retest reliability and construct validity of the computer-adaptive test version of a participation measure, the Late Life Disability Instrument (LLDI-CAT) for people with COPD and to compare scores and administration time with those of the static LLDI. Among 76 older adults with COPD, scores on the LLDI-CAT were compared to scores on measures of related constructs, between groups based on symptom severity, prognosis and frailty phenotype, and to scores on the static LLDI. A subsample of 28 people completed the LLDI-CAT a second time within one week of the initial administration for test-retest reliability. The LLDI-CAT had very good test-retest reliability (ICC2,1 0.88; SEM 2.74 points), fair correlations with physical function (r = 0.37-0.50), anxiety (r=-0.42), and depression (r=-0.50), fair to moderately-strong correlations with quality of life (r = 0.48-0.63), and strong correlation with the static LLDI limitation domain (r = 0.80). The LLDI-CAT scores differed between people with different symptom severity, prognosis and frailty phenotype (p ≤ 0.004). The mean administration time for the LLDI-CAT was 3.3 (1.5) minutes, less than that of the static LLDI at 6.3 (2.8) minutes (p < 0.001). The LLDI-CAT demonstrates evidence of test-retest reliability and construct validity, and correlates well with the limitation domain of the static LLDI for people with COPD. The LLDI-CAT can be used to assess participation for this population.


Assuntos
Teste Adaptativo Computadorizado , Avaliação da Deficiência , Fragilidade , Doença Pulmonar Obstrutiva Crônica , Qualidade de Vida , Atividades Cotidianas , Idoso , Estudos Transversais , Feminino , Fragilidade/diagnóstico , Fragilidade/etiologia , Fragilidade/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Doença Pulmonar Obstrutiva Crônica/complicações , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/psicologia , Reprodutibilidade dos Testes , Participação Social , Inquéritos e Questionários
8.
Medicine (Baltimore) ; 100(21): e26099, 2021 May 28.
Artigo em Inglês | MEDLINE | ID: mdl-34032747

RESUMO

BACKGROUND: Although home-based pulmonary rehabilitation programs have been shown in some studies to be an alternative and effective model, there is a lack of consensus in the medical literature due to different study designs and lack of standardization among procedures. Therefore, the purpose of this study was to compare the efficacy of a home-based versus outpatient pulmonary rehabilitation program for patients with chronic obstructive pulmonary disease (COPD). METHODS: Five electronic databases including Embase, PubMed, Scopus, Science Direct, and Cochrane Library will be searched in May 2021 by 2 independent reviewers. The reference lists of the included studies will be also checked for additional studies that are not identified with the database search. There is no restriction on the dates of publication or language in the search. The randomized controlled trials focusing on comparing home-based and outpatient pulmonary rehabilitation for COPD patients will be included in our meta-analysis. The following outcomes should have been measured: functional exercise capacity, disease-specific health-related quality of life, and cost-effectiveness measures. Risk ratio with a 95% confidence interval or standardized mean difference with 95% CI is assessed for dichotomous outcomes or continuous outcomes, respectively. RESULTS: It was hypothesized that these 2 methods would provide similar therapeutic benefits. REGISTRATION NUMBER: 10.17605/OSF.IO/5CV48.


Assuntos
Assistência Ambulatorial/organização & administração , Serviços Hospitalares de Assistência Domiciliar/organização & administração , Doença Pulmonar Obstrutiva Crônica/reabilitação , Qualidade de Vida , Assistência Ambulatorial/economia , Assistência Ambulatorial/métodos , Análise Custo-Benefício , Tolerância ao Exercício , Serviços Hospitalares de Assistência Domiciliar/economia , Humanos , Metanálise como Assunto , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/economia , Doença Pulmonar Obstrutiva Crônica/psicologia , Ensaios Clínicos Controlados Aleatórios como Assunto , Revisões Sistemáticas como Assunto , Resultado do Tratamento
9.
Health Qual Life Outcomes ; 19(1): 101, 2021 Mar 20.
Artigo em Inglês | MEDLINE | ID: mdl-33743746

RESUMO

BACKGROUND: Generic preference-based measures (GPBMs) are health-related quality of life (HRQoL) measures commonly used to evaluate the cost-utility of interventions in healthcare. However, the degree to which the content of GPBMs reflect the HRQoL of individuals with chronic obstructive pulmonary disease (COPD) has not yet been assessed. The purpose of this study was to examine the content and convergent validity of GPBMs in people with COPD. METHODS: COPD patients were recruited from healthcare centers in Ontario, Canada. The Patient-Generated Index (PGI) (an individualized HRQoL measure) and the RAND-36 (to obtain SF-6D scores; a GPBM) were administered. Life areas nominated with the PGI were coded using the International Classification of Functioning Disability and Health and mapped onto GPBMs. RESULTS: We included 60 participants with a mean age of 70 and FEV1% predicted of 43. The mean PGI score was 34.55/100 and the top three overarching areas that emerged were: 'mobility' (25.93%), 'recreation and leisure' (25.19%) and 'domestic life' (19.26%). Mapping of the nominated areas revealed that the Quality of Well-Being scale covered the highest number of areas (84.62%), Health Utilities Indices covered the least (15.38% and 30.77%) and other GPBMs covered between 46 and 62%. A correlation of 0.32 was calculated between the SF-6D and the PGI. CONCLUSIONS: The majority of GPBMs covered approximately half of the areas reported as being important to individuals with COPD. When areas relevant to COPD are not captured, HRQoL scores generated by these measures may inaccurately reflect patients' values and affect cost-effectiveness decisions.


Assuntos
Preferência do Paciente/psicologia , Doença Pulmonar Obstrutiva Crônica/psicologia , Qualidade de Vida , Inquéritos e Questionários/normas , Idoso , Análise Custo-Benefício , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Ontário , Doença Pulmonar Obstrutiva Crônica/economia
10.
PLoS One ; 16(3): e0247522, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33647039

RESUMO

BACKGROUND: A large body of evidence suggests that self-management interventions (SMIs) may improve outcomes in chronic obstructive pulmonary disease (COPD). However, accurate comparisons of the relative effectiveness of SMIs are challenging, partly due to heterogeneity of outcomes across trials and uncertainty about the importance of these outcomes for patients. We aimed to develop a core set of patient-relevant outcomes (COS) for SMIs trials to enhance comparability of interventions and ensure person-centred care. METHODS: We undertook an innovative approach consisting of four interlinked stages: i) Development of an initial catalogue of outcomes from previous EU-funded projects and/or published studies, ii) Scoping review of reviews on patients and caregivers' perspectives to identify outcomes of interest, iii) Two-round Delphi online survey with patients and patient representatives to rate the importance of outcomes, and iv) Face-to-face consensus workshop with patients, patient representatives, health professionals and researchers to develop the COS. RESULTS: From an initial list of 79 potential outcomes, 16 were included in the COS plus one supplementary outcome relevant to all participants. These were related to patient and caregiver knowledge/competence, self-efficacy, patient activation, self-monitoring, adherence, smoking cessation, COPD symptoms, physical activity, sleep quality, caregiver quality of life, activities of daily living, coping with the disease, participation and decision-making, emergency room visits/admissions and cost effectiveness. CONCLUSION: The development of the COPD COS for the evaluation of SMIs will increase consistency in the measurement and reporting of outcomes across trials. It will also contribute to more personalized health care and more informed health decisions in clinical practice as patients' preferences regarding COPD outcomes are more systematically included.


Assuntos
Cuidadores/psicologia , Doença Pulmonar Obstrutiva Crônica/psicologia , Doença Pulmonar Obstrutiva Crônica/terapia , Autocuidado/métodos , Autogestão/métodos , Atividades Cotidianas , Adulto , Análise Custo-Benefício , Técnica Delphi , Exercício Físico , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Inquéritos Epidemiológicos , Humanos , Masculino , Cooperação do Paciente , Qualidade de Vida , Autocuidado/economia , Autogestão/economia , Abandono do Hábito de Fumar , Resultado do Tratamento
11.
Ann Agric Environ Med ; 27(4): 689-694, 2020 Dec 22.
Artigo em Inglês | MEDLINE | ID: mdl-33356079

RESUMO

INTRODUCTION: Chronic Obstructive Pulmonary Disease (COPD) is a condition that affects over 2 million adults in Poland. In recent years, increasing attention has been focused on improving the quality of life of patients with COPD, which includes alleviating their physical discomfort and relates to their mental health. It is therefore critically important to evaluate research tools that can accurately assess the relationship between the physical and mental health of patients with this disease. OBJECTIVE: This aim of the study is to evaluate the relationship between the COPD Assessment Test (CAT) and the Distress Thermometer and Problem List results in COPD patients. MATERIAL AND METHODS: The research evaluated 70 patients with COPD as defined by the Global Initiative for Chronic Obstructive Pulmonary Disease (GOLD) criteria. Demographic data was obtained at baseline. Disease-specific quality of life was assessed using the CAT score, while overall distress was determined using the Distress Thermometer (DT) scale and a modified Problem List. The relationship between the CAT scores and the results of the Distress Thermometer and Problem List was statistically compared. The study was approved by the Bioethics Committee, and all patients provided written informed consent. RESULTS: The mean ± SD age was 69.6±9.05 (range 47-90) years. The average distress level was 4.09±1.95. A significant relationship was established between the CAT score and the results of the Distress Thermometer Scale (p<0.001); patients with higher CAT scores showed the highest level of distress. CONCLUSIONS: CAT was shown to be a simple, fast and clear measurement of disease-specific quality of life and was correlated with levels of distress in patients with COPD. Every patient with COPD should be evaluated using a scale such as the DT to measure their level of psychological distress.


Assuntos
Doença Pulmonar Obstrutiva Crônica/psicologia , Qualidade de Vida/psicologia , Termômetros/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Polônia , Doença Pulmonar Obstrutiva Crônica/etiologia
12.
BMC Pulm Med ; 20(1): 286, 2020 Nov 02.
Artigo em Inglês | MEDLINE | ID: mdl-33138804

RESUMO

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is a common respiratory condition characterised by dyspnoea during daily life. As the disease progresses, people with COPD can experience poor quality of life, reduced exercise capacity, worsening of symptoms and increased hospital admissions. Pulmonary rehabilitation, which includes exercise training, optimises both psychological and physical function, reduces symptoms and mitigates healthcare utilisation in people with COPD. There is, however, a gap in implementation of pulmonary rehabilitation programs, with global access limited to a small fraction of people with COPD. The overall aim of this study is to gather evidence that will optimise the implementation of pulmonary rehabilitation in people with COPD living in Perth, Western Australia. METHODS: This is a mixed methods study protocol informed by a critical realist perspective. The study will comprise four phases. In Phase 1, we will quantify target behaviours of healthcare professionals and people with COPD which are related to the implementation of pulmonary rehabilitation at three tertiary hospitals. In Phase 2, we will conduct semi-structured interviews to explore the determinants of these target behaviours from the perspectives of healthcare professionals, people with COPD and their primary support person. In Phase 3, knowledge gained in Phases 1 and 2 will be used by healthcare professionals and people with COPD to co-create, field test and apply strategies that optimise these target behaviours. In Phase 4, we will re-quantify these target behaviours to determine the influence of co-created strategies. The cost effectiveness of implementing the co-created strategies will be explored by an economic analysis. DISCUSSION: Understanding current clinical practice and the determinants of target behaviours pertaining to the implementation of pulmonary rehabilitation is crucial when developing strategies that successfully bridge the pulmonary rehabilitation implementation gap. If co-created strategies are effective, more people with COPD living in Perth, Western Australia will have access to pulmonary rehabilitation enabling them to derive the health benefits associated with this intervention.


Assuntos
Terapia por Exercício/métodos , Doença Pulmonar Obstrutiva Crônica/reabilitação , Projetos de Pesquisa , Atitude do Pessoal de Saúde , Análise Custo-Benefício , Dispneia/fisiopatologia , Tolerância ao Exercício/fisiologia , Nível de Saúde , Hospitalização , Humanos , Entrevistas como Assunto , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Doença Pulmonar Obstrutiva Crônica/psicologia , Qualidade de Vida , Austrália Ocidental
13.
Respir Res ; 21(1): 311, 2020 Nov 25.
Artigo em Inglês | MEDLINE | ID: mdl-33238993

RESUMO

BACKGROUND: Sexual function is often affected in patients suffering from chronic diseases especially chronic obstructive pulmonary disease (COPD). However, the effect of COPD on sexual satisfaction is underappreciated in clinical practice. The aim of this study is to evaluate the impact of COPD on patient's sexuality and the explanatory variables of sexual dissatisfaction. METHODS: Questionnaires were emailed to participants and they submitted their responses on the Santé Respiratoire France website. Data about sexual well-being (Arizona Sexual Experience Scale, ASEX), Quality of life (VQ11), anxiety, depression (Hospitalized anxiety and depression, HAD) and self-declared COPD grade were collected. RESULTS: Seven hundred and fifty one subjects were included and were characterized as follows: women-51%, mean age-61 years, in a couple-62% and 70%-retired. Every grade of COPD was represented. Out of 751 participants, 301 participants (40%) had no sexual activity and 450 (60%) had sexual activity. From the 450 participants, 60% needed to change their sexual life because of their disease (rhythm, frequency and position). Subjects often used medications to improve sexual performance (43% used short-acting bronchodilator and 13% -specific erectile dysfunction drugs). ASEX questionnaire confirmed patients' dissatisfaction (diminution of sexual appetite for 68% and sexual desire for 60%) because of breathlessness and fatigue. Eighty one percent of the responders had an altered quality of life (VQ11 mean score 35) and frequent suspected anxiety or depression (HAD mean score 10.8). Ninety percent declared that sexual dysfunction had never been discussed by their doctors, while 36% of patients would have preferred to undergo a specialized consultation. CONCLUSION: Sexual dysfunction is frequent among COPD patients and leads to an altered well-being, however being a cultural taboo, it remains frequently neglected. Sexual guidance should be a part of patient's consultations improve quality of sexual life.


Assuntos
Efeitos Psicossociais da Doença , Doença Pulmonar Obstrutiva Crônica/complicações , Doença Pulmonar Obstrutiva Crônica/psicologia , Comportamento Sexual/psicologia , Disfunções Sexuais Fisiológicas/etiologia , Disfunções Sexuais Fisiológicas/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Qualidade de Vida/psicologia , Comportamento Sexual/fisiologia , Disfunções Sexuais Fisiológicas/fisiopatologia , Inquéritos e Questionários
14.
Respir Med ; 174: 106198, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33120194

RESUMO

BACKGROUND: Pulmonary rehabilitation (PR) has been recognized to be an evidence-based treatment recommended for chronic obstructive pulmonary disease (COPD). The aim of this study was to investigate COPD patients' knowledge, attitudes and practices towards PR in China. METHODS: 1138 COPD patients from 13 hospitals were enrolled in this cross-sectional study. A questionnaire designed based on an official statement was completed by the participants. Effects of PR in patients were investigated. RESULTS: Mean score of the knowledge portion was only 7.76, while 46.22% of the participants believed they needed PR. Attendance rate was 24.69%. Financial conditions and hospitalization were contributing factors for scores, attendance rate, and belief in demands for PR therapy. Severe pulmonary function impairment indicated more demands for PR (OR = 0.18) and higher uptake rate (OR = 0.30). There was a weak correlation between smoking status (rho = -0.060), diagnosis year (rho = 0.094), frequency of exacerbations (rho = 0.059) and grades. High CAT score is a facilitator for attitudes towards PR (OR = 0.022). 93.24% of patients claimed that their exercise tolerance improved with PR therapy. The improvements were positively associated with needs (rho = 0.20), family support (rho = 0.22), grades (rho = 0.18), and monthly income of the family (rho = 0.14), but negatively correlated with age (rho = -0.16), exacerbations (rho = -0.15), and CAT score (rho = -0.13). CONCLUSIONS: This study suggested poor perception, disbelief in the need for PR, and limited uptake of PR among COPD patients in China, and revealed the significant factors involved. The findings of this study may assist health professionals in developing targeted strategies to promote PR and improve access and uptake of PR.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Doença Pulmonar Obstrutiva Crônica/psicologia , Doença Pulmonar Obstrutiva Crônica/reabilitação , Inquéritos e Questionários , Idoso , China , Estudos Transversais , Tolerância ao Exercício , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Doença Pulmonar Obstrutiva Crônica/fisiopatologia
15.
PLoS One ; 15(10): e0240821, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33064747

RESUMO

BACKGROUND: Few studies have focused on patients' emotional distress with end-stage chronic obstructive pulmonary disease (COPD) and their main family caregivers. METHODS: Cross-sectional data about emotional, functional, and burden-related variables were collected from 85 patients with end-stage COPD and their 85 respective main family caregivers to determine the variables that could predict their emotional well-being. Descriptive analyses, comparison of means, hierarchical regression models, and comparative quali-quantitative analyses were carried out. RESULTS: Data show that the great majority of patients with COPD spend years with this diagnosis, and have been admitted to the hospital several times in advance stage of illness the previous year of the moment of end-of-life stage. Furthermore, only a tiny percentage of the patients were functionally independent in the advanced stage of illness. CONCLUSIONS: The emotional distress and the burden of the family caregiver play an essential role in the distress of the patient, in conjunction with the patient's own functional independence and the time living with the disease, and comorbidity. On the other hand, variables of the patient, such as time since diagnosis, number of hospital admissions, comorbidity, functional dependence, and emotional distress, play an important role in the family caregiver's emotional distress and burden. Understanding how these variables are related is key to designing appropriate programs to reduce the emotional distress the patients with COPD at the end of life and their family caregivers.


Assuntos
Cuidadores/psicologia , Angústia Psicológica , Doença Pulmonar Obstrutiva Crônica/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Comorbidade , Efeitos Psicossociais da Doença , Estudos Transversais , Morte , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Doença Pulmonar Obstrutiva Crônica/patologia , Índice de Gravidade de Doença , Inquéritos e Questionários , Adulto Jovem
16.
COPD ; 17(4): 419-428, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32635760

RESUMO

The daily impact of chronic obstructive pulmonary disease (COPD) on younger patients is often underappreciated. To assess this, we investigated the disease burden experienced by younger and older patients. A panel of questions was developed in conjunction with the European Federation of Allergy and Airways Diseases Patients' Associations and Boehringer Ingelheim. The online survey was conducted by Instar Research. Data were collected from eight countries in Europe, plus China, Japan and the United States. All patients were receiving COPD maintenance therapy. Patients were stratified by age (45-54, 55-64, ≥65 years). Data were analyzed from 1,375 patients from Europe (925), China (150), Japan (100) and the US (200); 365 were aged 45-54, 440 aged 55-64, and 570 aged ≥65 years. Mean age was 61.8 years; 771 (56%) were male. A significantly higher proportion of patients aged 45-54 years reported "poor" or "very poor" wellbeing (35% vs. 28%; p < 0.05) and "high impact" on 8 of the 11 daily activities and requirements for adjusting activities assessed (all p < 0.05), compared with patients aged ≥65 years. Significantly more patients aged 45-54 versus ≥65 years associated their COPD with feeling "anxious", "stressed", "sad", or "overwhelmed" (all p < 0.05). Younger patients with COPD reported a higher impact on their daily activities, wellbeing and requirement for adjusting their activities due to their symptoms than older patients. Our findings highlight the importance of optimizing treatment for younger patients with COPD and suggest that clinicians should not overlook the burden of disease in these patients.


Assuntos
Atividades Cotidianas , Doença Pulmonar Obstrutiva Crônica/complicações , Doença Pulmonar Obstrutiva Crônica/psicologia , Qualidade de Vida , Fatores Etários , Idoso , Atitude Frente a Saúde , Efeitos Psicossociais da Doença , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Inquéritos e Questionários
17.
Rev Bras Enferm ; 73 Suppl 1: e20190423, 2020.
Artigo em Português, Inglês | MEDLINE | ID: mdl-32667477

RESUMO

OBJECTIVE: to assess quality of life, anxiety and depression in patients with Chronic Obstructive Pulmonary Disease. METHOD: a cross-sectional, quantitative study, conducted in a reference hospital for the treatment of pulmonary diseases. Seventy patients were assessed, using a sociodemographic and clinical questionnaire, Beck's anxiety and Depression Inventories and the SF-36 Quality of Life Scale. RESULTS: the participants had better quality of life in the vitality, mental health and social role functioning domains (median=50.0) and worse in limitation by physical and emotional role functioning (median=0.0 points). Anxiety, depression and oxygen dependence were associated with poorer results in the quality of life domains. CONCLUSION: all patients were classified with severe anxiety level and moderate depression predominance. Patients had low quality of life scores in all domains.


Assuntos
Ansiedade/etiologia , Depressão/etiologia , Doença Pulmonar Obstrutiva Crônica/complicações , Adulto , Idoso , Ansiedade/fisiopatologia , Brasil , Efeitos Psicossociais da Doença , Estudos Transversais , Depressão/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Doença Pulmonar Obstrutiva Crônica/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários
18.
COPD ; 17(3): 280-288, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32419522

RESUMO

This study's purpose was to (i) assess the impact of a 7-week pulmonary rehabilitation (PR) programme upon patient outcomes; incremental shuttle walk test (ISWT), COPD assessment tool (CAT), Clinical COPD Questionnaire (CCQ) and the Hospital Anxiety and Depression Scale (HADS); (ii) assess the impact of COPD severity on ISWT, psychological functioning and quality of life measures following PR; (iii) assess the feasibility of incorporating individually prescribed one repetition maximum (1RM) training loads into the existing strength training programme. Patients were people with COPD enrolled onto one of three versions (locations A, B and C) of a 7-week PR programme, which consisted of group exercise sessions and a social plus education element. Two locations incorporated individually prescribed training loads. Minimal clinically important changes (MCICs) are reported for the ISWT across all locations. Statistically significant changes in both CAT and the CCQ were found, with MCIC's evident for CAT score overall and individually at location B. MCIC's were not found for the CCQ. No statistically significant or MCICs were evident for the HADS. MCIC's were present only in patients with mild to moderate severity for the ISWT. For the CAT, moderate, severe and very severe patients with COPD experienced MCIC's. MCIC's and statistically significant increases in 1RM strength were seen at both locations. These findings evidence an effective PR service. Basic strength exercise programming and assessment are feasible and should be implemented in PR services to maximise patient outcomes.


Assuntos
Terapia por Exercício/métodos , Educação de Pacientes como Assunto/métodos , Doença Pulmonar Obstrutiva Crônica/reabilitação , Qualidade de Vida , Apoio Social , Idoso , Idoso de 80 Anos ou mais , Ansiedade/psicologia , Atenção à Saúde , Depressão/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Diferença Mínima Clinicamente Importante , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Doença Pulmonar Obstrutiva Crônica/psicologia , Treinamento Resistido/métodos , Índice de Gravidade de Doença , Inquéritos e Questionários , Resultado do Tratamento , Reino Unido , Teste de Caminhada
19.
BMJ Open ; 10(3): e035700, 2020 03 09.
Artigo em Inglês | MEDLINE | ID: mdl-32156769

RESUMO

OBJECTIVE: To understand the facilitators and barriers to the self-management of chronic obstructive pulmonary disease (COPD) in rural Nepal. SETTINGS: Community and primary care centres in rural Nepal. PARTICIPANTS: A total of 14 participants (10 people with COPD and 4 health care providers) were interviewed. PRIMARY AND SECONDARY OUTCOME MEASURES: People with COPD and healthcare provider's experience of COPD self-management in rural Nepal. RESULTS: Facilitators and barriers affecting COPD self-management in Nepal operated at the patient-family, community and service provider levels. People with COPD were found to have a limited understanding of COPD and medications. Some participants reported receiving inadequate family support and described poor emotional health. At the community level, widespread use of complementary and alternative treatment was found to be driven by social networks and was used instead of western medicine. There were limited quality controls in place to monitor the safe use of alternative treatment. While a number of service level factors were identified by all participants, the pertinent concerns were the levels of trust and respect between doctors and their patients. Service level factors included patients' demands for doctor time and attention, limited confidence of people with COPD in communicating confidently and openly with their doctor, limited skills and expertise of the doctors in promoting behavioural change, frustration with doctors prescribing too many medicines and the length of time to diagnose the disease. These service level factors were underpinned by resource constraints operating in rural areas. These included inadequate infrastructure and resources, limited skills of primary level providers and lack of educational materials for COPD. CONCLUSIONS: The study findings suggest the need for a more integrated model of care with multiple strategies targeting all three levels in order to improve the self-management practices among people with COPD.


Assuntos
Pessoal de Saúde/psicologia , Atenção Primária à Saúde/estatística & dados numéricos , Doença Pulmonar Obstrutiva Crônica/terapia , Autogestão/métodos , Idoso , Idoso de 80 Anos ou mais , Competência Clínica/estatística & dados numéricos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Nepal/epidemiologia , Atenção Primária à Saúde/tendências , Doença Pulmonar Obstrutiva Crônica/epidemiologia , Doença Pulmonar Obstrutiva Crônica/psicologia , Pesquisa Qualitativa , Qualidade de Vida , Alocação de Recursos/provisão & distribuição , Alocação de Recursos/tendências , População Rural , Autogestão/estatística & dados numéricos , Rede Social
20.
Drugs Aging ; 37(4): 263-270, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-32107742

RESUMO

Benzodiazepines, available clinically for almost six decades, are still one of the most widely prescribed classes of medication. The proportion of the population prescribed benzodiazepines increases with age, and harms also increase with age. The prevalence of prescribing in people > 85 years of age is as high as one in three, including in people with chronic obstructive pulmonary disease (COPD). The prevalence of COPD also increases with age. In COPD, indications cited for prescribing a benzodiazepine include anxiety, sleep disorders, or chronic breathlessness. Each of these symptoms is prevalent in the population with COPD, especially later in the course of the illness. For anxiety and insomnia, there is evidence to support short-term use, with little robust evidence to support prescribing for the symptomatic reduction of chronic breathlessness. People prescribed benzodiazepines are more likely to experience drowsiness or somnolence, exacerbations of their COPD, and respiratory tract infections. Furthermore, the longer people take benzodiazepines, the more likely they will become dependent on them. Prescribing patterns vary internationally but prescriptions of longer-acting benzodiazepines are declining in favour of shorter-acting compounds. Other evidence-based therapies that can more safely treat these problematic symptoms are available. For people already taking benzodiazepines, there are a number of interventions that have been shown to reduce the rate of prescribing. For people with COPD and not taking a benzodiazepine, but with symptoms where there is evidence of benefit, clinicians should weigh carefully the potential net benefit and prescribe at the lowest dose for the briefest time possible.


Assuntos
Benzodiazepinas/uso terapêutico , Prescrições de Medicamentos/estatística & dados numéricos , Doença Pulmonar Obstrutiva Crônica/psicologia , Transtornos de Ansiedade/tratamento farmacológico , Humanos
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