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- Relationship between Distress Related to Caregiver Burden and Physical Activity in Informal Caregivers of Patients with COPDPublication . Hipólito, Nádia; Ruivo, Adriana; Martins, Sara; Dinis, Beatriz; Flora, Sofia; Marques, Alda; Brooks, Dina; Silva, Cândida G.; Januário, Filipa; Silva, Sónia; Cruz, JoanaChronic obstructive pulmonary disease (COPD) can lead to increased dependence on the informal caregiver and, consequently, to distress associated with caregiving burden. In the general population, higher levels of physical activity (PA) are related to lower distress levels; however, this relationship has been scarcely studied in COPD. This study aimed to explore the relationship between distress and PA in informal caregivers of patients with COPD, and the influence of caregivers’ (age, sex) and patients’ (age, sex, lung function) characteristics and caregiving duration on this relationship. A cross-sectional study was conducted with 50 caregivers (62.7 ± 9.8 years, 88% female; 78% caring for a spouse/partner; 38% caring >40 h/week; patients’ FEV1=45.2 ± 21.3% predicted). Data collection comprised questions related to the caregiving context, distress related to caregiving burden assessed with the Informal Caregiver Burden Assessment Questionnaire (QASCI; total score, 7 subscales), and self-reported PA with the Habitual Physical Activity Questionnaire (HPAQ). Spearman’s correlation coefficient and linear regressions were used. Significant, negative and moderate correlations were found between the QASCI (28.5 ± 19.8) and the HPAQ (5.2 ± 1.3) (ρ=-0.46; p = 0.01); and between the HPAQ and some QASCI subscales (emotional burden ρ=-0.47; implications for personal life ρ=-0.52; financial burden ρ=-0.44; perception of efficacy and control mechanisms ρ=-0.42; p < 0.01). Two linear regression models were tested to predict QASCI total score including as predictors: 1) HPAQ alone (p = 0.001; r2=0.23); 2) HPAQ and caregiving h/week (p < 0.001; r2=0.34). Higher self-reported PA levels are related to decreased levels of distress associated with caregiver burden in COPD caregivers. Duration of caregiving may negatively influence this relationship.
- What Motivates Patients with COPD to Be Physically Active? A Cross-Sectional StudyPublication . Pimenta, Sara; Silva, Cândida G.; Flora, Sofia; Hipólito, Nádia; Burtin, Chris; Oliveira, Ana; Morais, Nuno; Brites-Pereira, Marcelo; Carreira, Bruno P.; Januário, Filipa; Andrade, Lília; Martins, Vitória; Rodrigues, Fátima; Brooks, Dina; Marques, Alda; Cruz, JoanaMotivation can be broadly defined as what moves people to act. Low motivation is a frequently reported factor for the reduced physical activity (PA) levels observed in patients with chronic obstructive pulmonary disease (COPD). This study assessed patients’ motives to be physically active, according to three pulmonary rehabilitation (PR) participation groups (Never PR, Previous PR and Current PR) and explored whether these motives were related to the PA levels and clinical characteristics. The motives to be physically active were assessed with the Exercise Motivation Inventory-2 (EMI-2, 14 motivational factors, five dimensions) and PA with accelerometry (PA groups: <5000 steps/day vs. ≥5000 steps/day). The clinical variables included symptoms, impact of the disease, exercise capacity and comorbidities. Ninety-two patients (67.4 ± 8.1 years, 82.6% male, forced expiratory volume in 1s (FEV1) 48.3 ± 18.9% predicted; 30.4% Never PR, 51% Previous PR and 18.5% Current PR) participated. The motivational dimensions related to health/fitness presented the highest scores (3.8 ± 1.1; 3.4 ± 1.3). The motives to be active were not significantly different between PA groups (p > 0.05) but having less symptoms and ≥two comorbidities were associated with higher scores in psychological/health and body-related motives, respectively (p < 0.05). The findings may encourage health professionals to actively explore with patients their motives to be physically active to individualise PA promotion.
- Phenotyping Adopters of Mobile Applications Among Patients With COPD: A Cross-Sectional StudyPublication . Flora, Sofia; Hipólito, Nádia; Brooks, Dina; Marques, Alda; Morais, Nuno; Silva, Cândida; Silva, Fernando; Ribeiro, José; Caceiro, Rúben; Carreira, Bruno; Burtin, Chris; Pimenta, Sara; Cruz, Joana; Oliveira, AnaEffectiveness of technology-based interventions to improve physical activity (PA) in people with COPD is controversial. Mixed results may be due to participants' characteristics influencing their use of and engagement with mobile health apps. This study compared demographic, clinical, physical and PA characteristics of patients with COPD using and not using mobile apps in daily life. Patients with COPD who used smartphones were asked about their sociodemographic and clinic characteristics, PA habits and use of mobile apps (general and PA-related). Participants performed a six-minute walk test (6MWT), gait speed test and wore an accelerometer for 7 days. Data were compared between participants using (App Users) and not using (Non-App Users) mobile apps. A sub-analysis was conducted comparing characteristics of PA–App Users and Non-Users. 59 participants were enrolled (73% Male; 66.3 ± 8.3 yrs; FEV1 48.7 ± 18.4% predicted): 59% were App Users and 25% were PA-App Users. Significant differences between App Users and Non-App Users were found for age (64.2 ± 8.9 vs. 69.2 ± 6.3yrs), 6MWT (462.9 ± 91.7 vs. 414.9 ± 82.3 m), Gait Speed (Median 1.5 [Q1–Q3: 1.4–1.8] vs. 2.0 [1.0–1.5]m/s), Time in Vigorous PA (0.6 [0.2–2.8] vs. 0.14 [0.1–0.7]min) and Self-Reported PA (4.0 [1.0–4.0] vs. 1.0 [0.0–4.0] Points). Differences between PA–App Users and Non-Users were found in time in sedentary behavior (764.1 [641.8–819.8] vs. 672.2 [581.2–749.4] min) and self-reported PA (4.0 [2.0–6.0] vs. 2.0 [0.0–4.0] points). People with COPD using mobile apps were younger and had higher physical capacity than their peers not using mobile apps. PA-App Users spent more time in sedentary behaviors than Non-Users although self-reporting more time in PA.
- Reliability and validity of the QASCI questionnaire to assess caregiving burden in COPDPublication . Hipólito, Nádia; Ruivo, Adriana; Martins, Sara; Flora, Sofia; Marques, Alda; Brooks, Dina; Silva, Cândida G.; Januário, Filipa; Cruz, JoanaIntroduction: Chronic obstructive pulmonary disease (COPD) often leads to an increased dependence on the informal carer, which can result in higher levels of distress, anxiety or depression associated with the burden of caregiving and, consequently, reduced quality of life (1). Several instruments have been used to assess carer burden in COPD; however, their measurement properties have been poorly assessed in this population (2). The Questionário de Avaliação de Sobrecarga do Cuidador Informal (QASCI) is a Portuguese questionnaire, originally created for carers of patients with stroke (3) and later validated in a sample with various chronic diseases, including respiratory diseases (4). However, its reliability and validity in informal carers of patients with COPD have yet to be established. Therefore, this study aimed to assess the reliability and validity of the QASCI questionnaire for informal carers of patients with COPD. Materials and Methods: The Portuguese questionnaire QASCI evaluates the distress associated with burden of caregiving (scores range from 0 to 100, with higher scores indicating higher levels of burden). It has 32 items divided in 7 subscales (emotional burden; personal life implications; financial burden; reactions to demands; mechanism of efficacy and control; familiar support; and satisfaction with the role). Each item is scored with a 5-point Likert scale. Reliability included internal consistency assessment using the Cronbach’s alpha. Construct validity was assessed using the following questionnaires: Zarit Burden Interview (ZBI) for concurrent validity; the Hospital Anxiety and Depression Scale (HADS) (anxiety and depression) and WHOQOL-Bref (quality of life) for convergent validity. Pearson’s (r) or Spearman’s (ρ) correlation coefficients were used according to the distribution of each variable. QASCI was expected to present a stronger (positive) correlation with ZBI than with HADS (r≥0.5) and a negative correlation with WHOQOL-Bref (r≤-.4) (3, 4). Results: Forty-one carers (62.4±10.1 years, 90.2% female; patients’ FEV1=43.7±19.7%pred) completed the questionnaires. Cronbach’s alpha of the full QASCI scale was .767 and the subscales presented values between .633 and .929. QASCI and ZBI had a very strong positive correlation (r=.914; p=.01). QASCI had a strong positive correlation with HADS anxiety (r=.608; p=.01) and depression (ρ=.617; p=.01) subscales and moderate to strong negative correlations with all the WHOQOL-Bref subscales (-.418 to .723, p=.01). Discussion and Conclusions: QASCI presented good internal consistency and construct validity results. QASCI seems to be a promising measure to evaluate distress levels associated with burden of caregiving in informal carers of patients with COPD.
- Reliability and validity of the international physical activity questionnaire short-form (IPAQ-sf) in COPDPublication . Flora, Sofia; Hipólito, Nádia; Santos, Liliana; Januário, Filipa; Silva, Sónia; Valente, Carla; Andrade, L; Rodrigues, Fátima; Marques, Alda; Cruz, JoanaPhysical activity (PA) may improve COPD prognosis, thus its assessment and promotion are crucial. The International Physical Activity Questionnaire Short-Form (IPAQ-sf) is widely used for assessing PA but there is limited evidence on its clinimetric properties in COPD. We assessed the test-retest reliability and validity of the IPAQ-sf in patients with COPD. Fifty-five participants (68.6±7.8yrs, 48 males, FEV1 52.3±22.5%pred) completed the IPAQ-sf, wore an accelerometer for 7 days and completed a second IPAQ-sf. Test-retest reliability/agreement was assessed with: Intraclass Correlation (ICC, 95%CI), 95% Limits of Agreement (LoA), standard error of measurement (SEM) and minimal detectable change (MDC95) for continuous variables; %agreement for categories (“active” vs “inactive”). Validity was assessed with Spearman’s correlations (ρ) between the IPAQ-sf (METs-min/week, time in vigorous [VPA] and moderate PA [MPA] per week) and accelerometry [time in MVPA, VPA and MPA per week] for continuous variables; %agreement, Cohen’s kappa, sensitivity and specificity (95%CI) for categories. Reliability was acceptable (ICC=0.738, 0.629→0.873) but with wide LoA (-5713→4793.3 METs-min/week). SEM and MDC95 were 1844.7 and 5113.3 METs-min/week, respectively. %agreement of the two IPAQ-sf was 85.5% (kappa=0.660, 0.444→0.876). Significant correlations were found between METsmin/week and accelerometry (0.515≤ρ≤0.596), except for VPA (p>0.05). %agreement between tools was 67.3% (kappa=0.350, 0.279→0.571) with high sensitivity (0.89, 0.887→0.891) but low specificity (0.46, 0.46→0.47). The IPAQ-sf could be used as PA measurement tool in COPD although caution is needed to avoid misclassification.
- Construct validity and reliability of the Informal Caregiver Burden Assessment Questionnaire (QASCI) in caregivers of patients with COPDPublication . Hipólito, Nádia; Martins, Sara; Ruivo, Adriana; Flora, Sofia; Silva, Cândida G.; Marques, Alda; Brooks, Dina; Cruz, JoanaIntroduction: COPD often leads to loss of independence in daily activities which may increase the dependency on the informal caregiver, resulting in caregiving burden. Several instruments have been used to assess caregiving burden in COPD; however, their measurement properties have been poorly investigated in this population. This study assessed the construct validity and reliability of the Informal Caregiver Burden Assessment Questionnaire (QASCI) in informal caregivers of patients with COPD. Methods: Participants completed the QASCI (higher scores indicate higher burden) and the following questionnaires to assess construct validity: Zarit Burden Interview (ZBI), Hospital Anxiety and Depression Scale (HADS) and World Health Organization Quality of Life Instrument – Short Form (WHOQOL-Bref). QASCI was completed again one week later to assess test-retest reliability. Statistical analyses included: Pearson’s (r) or Spearman’s (ρ) correlations (construct validity); Cronbach’s α (internal consistency); Intraclass Correlation Coefficient (ICC2,1, test-retest reliability) and Standard Error of Measurement (SEM), Minimal Detectable Change (MDC95) and Bland and Altman 95% Limits of Agreement (LoA). Results: Fifty caregivers (62.7 ± 9.8 years, 88% female; patients’ FEV1 = 45.2 ± 21.3%predicted) participated. QASCI mean score was 28.5 ± 19.8 (moderate burden). QASCI was positively correlated with ZBI (r = 0.908; p < 0.01), HADS anxiety (r = 0.613; p < 0.01) and depression (ρ = 0.634; <0.01) and negatively correlated with WHOQOL-Bref ( 0.476 to 0.739) (all p < 0.01). Cronbach’s α was 0.793 for the QASCI total score (subscales: 0.747–0.932). The ICC2,1 was 0.924, SEM 2.8 and MDC95 7.8, and the LoA were 18.3 to 11.1. Conclusions: The QASCI seems to be a promising measure to assess burden levels associated with informal caregiving in COPD.
- Relação entre a atividade física e o distress associado à sobrecarga em cuidadores informais de indivíduos com DPOCPublication . Ruivo, Adriana; Hipólito, Nádia; Martins, Sara; Marques, Alda; Brooks, Dina; Silva, Cândida G.; Cruz, JoanaIntrodução: A doença pulmonar obstrutiva crónica (DPOC) é uma condição que pode levar ao aumento da dependência do doente em relação ao cuidador informal e, consequentemente, promover um aumento do distress associado à sobrecarga deste.1 De acordo com a literatura, na população geral, maiores níveis de atividade física (AF) contribuem para menores níveis de distress2. O objetivo principal deste estudo foi verificar se esta relação se confirma em cuidadores informais de pessoas com DPOC. Metodologia: Foi desenvolvido um estudo observacional transversal, tendo-se realizado a caracterização sociodemográfica da amostra, a recolha de informação sobre o contexto de prestação de cuidados e a aplicação dos questionários: Questionário de Avaliação de Sobrecarga do Cuidador Informal (QASCI), para avaliar o nível de distress associado à sobrecarga, e Habitual Physical Activity Questionnaire (HPAQ), para avaliar o nível de AF. Para a análise de dados foram utilizadas medidas de estatística descritiva, os coeficientes de correlação Pearson e Spearman e regressões lineares (simples e múltiplas). Resultados: Foram incluídos 26 cuidadores (63,1 ± 9,7 anos; 84,6% feminino e 15,4% masculino). A média do QASCI foi de 31,3 ± 22 e a do HPAQ foi de 5,5 ± 1,8. A correlação entre estas variáveis foi moderada negativa (r=-0,535, p=0.01). A variável AF teve a capacidade de predizer o valor do QASCI em 28,7%. Ao adicionar a variável duração de cuidados em anos, foi possível aumentar para 54,6% a capacidade de a equação predizer o valor do QASCI. Conclusões: Os resultados sugerem que existe uma relação entre o aumento do nível da AF e a diminuição do nível de distress nesta população. Estes achados suportam a importância da promoção da prática de AF nos cuidadores informais de indivíduos com DPOC. Estudos longitudinais futuros deverão ser considerados.
- What Motivates Patients with COPD to Be Physically Active? A Cross-Sectional StudyPublication . Pimenta, Sara; Silva, Cândida; Flora, Sofia; Hipólito, Nádia; Burtin, Chris; Oliveira, Ana; Morais, Nuno; Brites-Pereira, Marcelo; Carreira, Bruno P.; Januário, Filipa; Andrade, Lilia; Martins, Vitória; Rodrigues, Fátima; Brooks, Dina; Marques, Alda; Cruz, JoanaMotivation can be broadly defined as what moves people to act. Low motivation is a frequently reported factor for the reduced physical activity (PA) levels observed in patients with chronic obstructive pulmonary disease (COPD). This study assessed patients’ motives to be physically active, according to three pulmonary rehabilitation (PR) participation groups (Never PR, Previous PR and Current PR) and explored whether these motives were related to the PA levels and clinical characteristics. The motives to be physically active were assessed with the Exercise Motivation Inventory-2 (EMI-2, 14 motivational factors, five dimensions) and PA with accelerometry (PA groups: <5000 steps/day vs. ≥5000 steps/day). The clinical variables included symptoms, impact of the disease, exercise capacity and comorbidities. Ninety-two patients (67.4 ± 8.1 years, 82.6% male, forced expiratory volume in 1s (FEV1) 48.3 ± 18.9% predicted; 30.4% Never PR, 51% Previous PR and 18.5% Current PR) participated. The motivational dimensions related to health/fitness presented the highest scores (3.8 ± 1.1; 3.4 ± 1.3). The motives to be active were not significantly different between PA groups (p > 0.05) but having less symptoms and ≥two comorbidities were associated with higher scores in psychological/health and body-related motives, respectively (p < 0.05). The findings may encourage health professionals to actively explore with patients their motives to be physically active to individualise PA promotion.
- Pulmonary Rehabilitation Guideline Referral in COPD - a FHIR mapping proposalPublication . Hipólito, Nádia; Jácome, Cristina; Almeida, Rute; Vieira-Marques, PedroChronic Obstructive Pulmonary Disease (COPD) is a highly prevalent progressive respiratory disease, characterized by airflow limitation, respiratory symptoms, and exercise intolerance, which greatly impacts patient’s daily life. Pulmonary Rehabilitation (PR) is a well-recognized, cost-effective, and safe intervention with known benefits, recommended by COPD management guidelines. Despite this, there is a potential sub-diagnosis of the condition and low access rates to PR in the COPD population. Reasons may include a lack of detailed knowledge about how to refer potential patients to PR and the lack of specific criteria for the referral. Information about the patient’sstatus and available services also plays a vital role in referrals. Additionally, there is high heterogeneity of outcomes and measures reported in the literature for PR, hindering the benchmark and dissemination of its efficacy and evidence synthesis; it also prevents communication and inter-institutional and international work. Thus, improving information availability and flow can facilitate a more efficient process. This study aims to develop an interoperable digital protocol for PR referral, to support healthcare professionals in the datacollection and referral process, making the process simpler and more efficient while also contributing to a transparent and coherent interinstitutional data exchange and continuous workflow. The variables and associatedoutcomes recommended by the Portuguese General Health Direction (Direção Geral da Saúde, DGS) in the standard 014/2019 regarding PR programs referral in primary care were described and translated to the HL7-FHIR health datastandard. The flow of the protocol was also presented. This work aims to contribute to facilitating the process of PR referral by proposing a FHIR-based approach for describing relevant information and the decision-making process for PR referral, aiming to contribute for the support of health professionals in the referral decision-making process in primary care, making it simpler and more efficient while also contributing to inter-institutional workflow articulation and information availability.