Browsing by Author "Souto-Miranda, Sara"
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- Assessing caregiving experience in COPD: content validity of the Zarit Burden InterviewPublication . Cruz, Joana; Marques, Alda; Souto-Miranda, Sara; Goldstein, Roger; Brooks, DinaCaring for a relative with COPD influences multiple dimensions of carers' lives. Several instruments have been used to assess the caregiving experience in COPD,1 e.g. the Zarit Burden Interview (ZBI). This instrument was originally developed for use in carers of people with dementia, however, its applicability in COPD has not been tested. This study explored the content validity of the ZBI in carers of patients with COPD. Ten carers (68.2±6.9yrs, all female) of patients with COPD (74.7±5.3yrs, all male, FEV1=49.2±19.0%pred) participated in cognitive debriefing interviews. They were asked to complete the ZBI and verbalise their thinking process to assess the adequacy of its content and instructions. Interviews were recorded and transcribed for further analysis using the qualitative data analysis software (WebQDA). Responses to the ZBI were also analysed to explore floor/ceiling effects. From the 22 items of the ZBI, 6 items were relevant for all carers and 11 items were not relevant for at least one participant. Five of these 11 items were not relevant for ≥40% of the sample and were related to stress for providing care, embarrassment about patient’s behaviour and impacts on social/leisure time. The remaining 5 items were not consensual. Overall, the ZBI was well-understood although 8 items were less clear for some carers. They suggested: improving questions (n=1) and scoring (n=5); eliminating item 4 (n=2); including 2 questions about the caregiving context (n=1). Responses were mostly distributed in the option ‘Never/Not at all’. The ZBI in its current form should not be used to assess carer experience among those caring for patients with COPD. 1Cruz, J et al. Resp Med 2017;128:13-27
- Assessing caregiving experience in COPD: Content validity of the Zarit Burden Interview in Canadian and Portuguese caregiversPublication . Selzler, Anne-Marie; Brooks, Dina; Marques, Alda; Souto-Miranda, Sara; Goldstein, Roger; Cruz, JoanaInformal caregivers play an important role in chronic disease management but their experience is often neglected. The objective of this study was to explore the content validity of the Zarit Burden Interview (ZBI) in caregivers of individuals with COPD in Canada and Portugal.
- COPD profiles and treatable traits using minimal resources: Identification, decision tree and longitudinal stabilityPublication . Marques, Alda; Souto-Miranda, Sara; Machado, Ana; Oliveira, Ana; Jácome, Cristina; Cruz, Joana; Enes, Vera; Afreixo, Vera; Martins, Vitória; Andrade, L; Valente, Carla; Ferreira, Diva; Simão, Paula; Brooks, Dina; TavaresBackground: Chronic obstructive pulmonary disease (COPD) is highly heterogeneous and complex. Hence, personalising assessments and treatments to this population across different settings and available resources imposes challenges and debate. Research efforts have been made to identify clinical phenotypes or profiles for prognostic and therapeutic purposes. Nevertheless, such profiles often do not describe treatable traits, focus on complex physiological/pulmonary measures which are frequently not available across settings, lack validation and/or their stability over time is unknown. Objective: To identify profiles and their treatable traits based on simple and meaningful measures; to develop and validate a profile decision tree; and to explore profiles’ stability over time in people with COPD. Methods: An observational, prospective study was conducted with people with COPD. Clinical characteristics, lung function, symptoms, impact of the disease (COPD assessment test–CAT), health-related quality of life, physical activity, lower-limb muscle strength and functional status were collected cross-sectionally and a subsample was followed-up monthly over six months. A principal component analysis and a clustering procedure with k-medoids were applied to identify profiles. Pulmonary and extrapulmonary (i.e., physical, symptoms and health status, and behavioural/life-style risk factors) treatable traits were identified in each profile based on the established cut-offs for each measure available in the literature. The decision tree was developed with 70% and validated with 30% of the sample, cross-sectionally. Agreement between the profile predicted by the decision tree and the profile defined by the clustering procedure was determined using Cohen’s Kappa. Stability was explored over time with a stability score defined as the percentage ratio between the number of timepoints that a participant was classified in the same profile (most frequent profile for that participant) and the total number of timepoints (i.e., 6). Results: 352 people with COPD (67.4±9.9 years; 78.1% male; FEV1=56.2±20.6% predicted) participated and 90 (67.6±8.9 years; 85.6% male; FEV1=52.1±19.9% predicted) were followed-up. Four profiles were identified with distinct treatable traits. The decision tree was composed by the CAT, age and FEV1% predicted and had an agreement of 71.7% (Cohen’s Kappa=0.62, p<0.001) with the actual profiles. 48.9% of participants remained in the same profile whilst 51.1% moved between two (47.8%) and three (3.3%) profiles over time. The overall stability of profiles was 86.8±15%. Conclusion: Profiles and treatable traits can be identified in people with COPD with simple and meaningful measures possibly available even in minimal-resource settings. Regular assessments are recommended as people with COPD may change profile over time and hence their needs of personalised treatment.
- COPD profiles and treatable traits using minimal resources: Identification, decision tree and stability over timePublication . Marques, Alda; Souto-Miranda, Sara; Machado, Ana; Oliveira, Ana; Jácome, Cristina; Cruz, Joana; Enes, Vera; Afreixo, Vera; Martins, Vitória; Andrade, Lília; Valente, Carla; Ferreira, Diva; Simão, Paula; Brooks, Dina; Tavares, Ana HelenaBackground and objective: Profiles of people with chronic obstructive pulmonary disease (COPD) often do not describe treatable traits, lack validation and/or their stability over time is unknown. We aimed to identify COPD profiles and their treatable traits based on simple and meaningful measures; to develop and validate a decision tree and to explore profile stability over time. Methods: An observational, prospective study was conducted. Clinical characteristics, lung function, symptoms, impact of the disease (COPD Assessment Test—CAT), health-related quality of life, physical activity, lower-limb muscle strength and functional status were collected cross-sectionally and a subsample was followed-up monthly over six months. A principal component analysis and a clustering procedure with k-medoids were applied to identify profiles. A decision tree was developed and validated cross-sectionally. Stability was explored over time with the ratio between the number of timepoints that a participant was classified in the same profile and the total number of timepoints (i.e., 6). Results: 352 people with COPD (67.4 ± 9.9 years; 78.1% male; FEV1 = 56.2 ± 20.6% predicted) participated and 90 (67.6 ± 8.9 years; 85.6% male; FEV1 = 52.1 ± 19.9% predicted) were followed-up. Four profiles were identified with distinct treatable traits. The decision tree included CAT (< 18 or ≥ 18 points); age (< 65 or ≥ 65 years) and FEV1 (< 48 or ≥ 48% predicted) and had an agreement of 71.7% (Cohen’s Kappa = 0.62, p < 0.001) with the actual profiles. 48.9% of participants remained in the same profile whilst 51.1% moved between two (47.8%) or three (3.3%) profiles over time. Overall stability was 86.8 ± 15%. Conclusion: Four profiles and treatable traits were identified with simple and meaningful measures possibly available in low-resource settings. A decision tree with three commonly used variables in the routine assessment of people with COPD is now available for quick allocation to the identified profiles in clinical practice. Profiles and treatable traits may change over time in people with COPD hence, regular assessments to deliver goal-targeted personalised treatments are needed.
- Monthly follow-ups of functional status inpeople with COPD: A longitudinal studyPublication . Rocha, Vânia; Cabral, Jorge; Souto-Miranda, Sara; Machado, Ana Filipa; Cristina, Jácome; Cruz, Joana; Martins, Vitória; Simão, Paula; Mendes, Maria Aurora; Afreixo, Vera; Marques, AldaFunctional status is an important and meaningful outcome in people with chronic obstructive pulmonary disease (COPD), although its measurement is not embedded in routine clinical assessments. This study described the functional status of people with COPD using the 1-min sit-to-stand test (1minSTS) over a 6-month period and the examined sociodemographic and clinical characteristics associated with this outcome. Data from a prospective study including people with COPD were analyzed. Functional status was assessed monthly with the 1minSTS over 6 months. Linear-mixed effect models assessed the 1minSTS number of repetitions mean change. One-hundred and eight participants (82.4% men; 66.9 +-9.5 years) were included. A significantly lower number of repetitions in the 1minSTS over the 6-month period was associated with being female (estimate: -4.69, 95%CI: -8.20; -1.18), being older (estimate: -0.56, 95%CI: -0.77; -0.34), having higher BMI (estimate: -0.55, 95%CI: -0.81; -0.28) and having higher activity-related dyspnea (estimate: -2.04, 95%CI: -3.25; -0.83). Half of the participants showed improvements above three repetitions in the 1minSTS over the 6-month period, independently of their baseline impairment (1minSTS < 70% predicted: 52.5%; 70% predicted: 54.4%). To conclude, monthly follow-up assessments were associated with clinically relevant benefits in the functional status of people with COPD. Age, body composition, and activity-related dyspnea were the main predictors of functional status over time. Further research is needed to corroborate our findings and to support the beneficial effects of regular COPD monitoring.