Integrating palliative care education in pulmonary rehabilitation: a randomized controlled study protocol.

BACKGROUND: Palliative care addresses multiple unmet needs of people with chronic obstructive pulmonary disease (COPD) or interstitial lung diseases (ILD) and their family and/or friend caregivers, but it remains highly underused. Pulmonary rehabilitation (PR) may provide a key opportunity to introduce palliative care. We aim to explore the effects of palliative care education as part of PR on knowledge about this field in people with COPD or ILD and their family and/or friend caregivers. METHODS: A randomized controlled study will compare PR with palliative care education (experimental) with traditional PR (control) in people with COPD or ILD and their family and/or friend caregivers. Family and/or friend caregivers will be invited to take part in education and psychosocial support sessions. In addition to the usual educational content, the experimental group will have a session on palliative care, a "Peer-to-peer session", two "Get-apart sessions" and online sessions. The "Peer-to-peer session" and the "Get-apart sessions" will be discussions about topics suggested by participants. The "Get-apart sessions" will be dedicated to people with COPD or ILD apart from their family and/or friend caregivers and vice versa. The online sessions will be zoom meetings to discuss any health-related issues raised by participants, at a flexible time. A mixed-methods approach will be used to evaluate the outcomes. The primary outcome will be knowledge about palliative care. Secondary outcomes will include attitude towards palliative care referral, symptoms, disease impact, health-related quality of life, needs, knowledge about the disease, burden of providing care, adherence, adverse events and referral to a specialist palliative care team. Quantitative and qualitative data will be collected at baseline and end of PR. At 6-months post-PR, only patient-reported outcomes will be collected. For the primary outcome, time*group interaction will be analyzed with mixed analysis of variance. DISCUSSION: This study aims to demonstrate the impact of integrating palliative care into the PR education program. TRIAL REGISTRATION: The trial was registered in the ClinicalTrials.gov U.S. National Library of Medicine, on 1st September, 2023 (NCT06046547).

Effects of ActiGraph's filter, epoch length and non-wearing time algorithm on step counts in people with COPD.

The influence of the ActiGraph® processing criteria on estimating step counts in chronic obstructive pulmonary disease (COPD) remains uncertain. This study aimed to assess the influence of filters, epoch lengths and non-wearing time (NWT) algorithms on steps/day in people with COPD. ActiGraph GT3X+ was worn on the waist for seven days. Steps were detected using different filters (normal and low-frequency extension [LFE]), epoch lengths (15s and 60s), and NWT algorithms (Choi and Troiano). Linear mixed-effects model was applied to assess the effects of filter, epoch length, NWT algorithm on steps/day. Lin's concordance correlation and Bland-Altman were used to measure agreement. A total of 136 people with COPD (107 male; 69 ± 8 years; FEV1 51 ± 17% predicted) were included. Significant differences were found between filters (p < 0.001), but not between epoch lengths or NWT algorithms. The LFE increased, on average, approximately 7500 steps/day compared to the normal filter (p < 0.001). Agreement was poor (<0.3) and proportional bias was significant when comparing steps/day computed with different filters, regardless of the epoch length and NWT algorithm. Filter choice but not epoch lengths or NWT algorithms seem to impact measurement of steps/day. Future studies are needed to recommend the most accurate technique for measuring steps/day in people with COPD.

Core outcome set for pulmonary rehabilitation of patients with COPD: results of a modified Delphi survey.

INTRODUCTION: There is high heterogeneity of outcomes and measures reported in pulmonary rehabilitation (PR) trials of people with chronic obstructive pulmonary disease (COPD). This hinders study comparability and benchmarking of PR. We have developed a core outcome set (COS) to overcome these challenges. METHODS: This study was informed by a systematic review and two qualitative studies and had patient involvement since its inception. A two-round Delphi survey was available in seven languages. Outcomes (n=63) scored 7-9 (crucial) by ≥70% of the participants and 1-3 (not that important) by ≤15% of participants from both groups in the Likert scale were automatically included in the COS, while outcomes that were considered crucial by only one of the groups were further discussed by the authors in a meeting. RESULTS: A total of 299 people (n=229 healthcare professionals/researchers/policy-makers; n=70 people with COPD and informal caregivers) participated in the survey (83% retention), which covered 29 countries/five continents. After the second round, six outcomes were included and three were added in the meeting. The final COS contains dyspnoea, fatigue, functional exercise capacity, health-related quality of life, health behaviours/lifestyle, knowledge about the disease, lower limb muscle function, personal goals and problematic activities of daily living. CONCLUSION: A COS for PR of people with COPD is now available and can be used by different stakeholders to improve consistency and comparability of studies, benchmark PR and improve the quality of care provided. Future research should establish the core measures and investigate the uptake of this COS.

European Respiratory Society clinical practice guideline: palliative care for people with COPD or interstitial lung disease.

There is increased awareness of palliative care needs in people with COPD or interstitial lung disease (ILD). This European Respiratory Society (ERS) task force aimed to provide recommendations for initiation and integration of palliative care into the respiratory care of adult people with COPD or ILD. The ERS task force consisted of 20 members, including representatives of people with COPD or ILD and informal caregivers. Eight questions were formulated, four in the Population, Intervention, Comparison, Outcome format. These were addressed with full systematic reviews and application of Grading of Recommendations Assessment, Development and Evaluation for assessing the evidence. Four additional questions were addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations. The following definition of palliative care for people with COPD or ILD was agreed. A holistic and multidisciplinary person-centred approach aiming to control symptoms and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers. Recommendations were made regarding people with COPD or ILD and their informal caregivers: to consider palliative care when physical, psychological, social or existential needs are identified through holistic needs assessment; to offer palliative care interventions, including support for informal caregivers, in accordance with such needs; to offer advance care planning in accordance with preferences; and to integrate palliative care into routine COPD and ILD care. Recommendations should be reconsidered as new evidence becomes available.

Responsiveness to pulmonary rehabilitation in COPD is associated with changes in microbiota.

BACKGROUND: Pulmonary Rehabilitation (PR) is one of the most cost-effective therapies for chronic obstructive pulmonary disease (COPD) management. There are, however, people who do not respond to PR and reasons for non-response are mostly unknown. PR is likely to change the airway microbiota and this could play a role in its responsiveness. In this study we have explored the association between PR effectiveness and specific alterations in oral microbiota and inflammation. METHODS: A prospective longitudinal study was conducted. Data on exercise capacity, dyspnoea, impact of disease and 418 saliva samples were collected from 76 patients, half of whom participated in a 12-weeks PR programme. Responders and non-responders to PR (dyspnoea, exercise-capacity and impact of disease) were defined based on minimal clinically important differences. RESULTS: Changes in microbiota, including Prevotella melaninogenica and Streptococcus were observed upon PR. Prevotella, previously found to be depleted in severe COPD, increased during the first month of PR in responders. This increase was negatively correlated with Streptococcus and Lautropia, known to be enriched in severe cases of COPD. Simultaneously, an anti-inflammatory commensal of the respiratory tract, Rothia, correlated strongly and negatively with several pro-inflammatory markers, whose levels were generally boosted by PR. Conversely, in non-responders, the observed decline in Prevotella correlated negatively with Streptococcus and Lautropia whose fluctuations co-occurred with several pro-inflammatory markers. CONCLUSIONS: PR is associated with changes in oral microbiota. Specifically, PR increases salivary Prevotella melaninogenica and avoids the decline in Rothia and the increase in Streptococcus and Lautropia in responders, which may contribute to the benefits of PR.

Saliva as a non-invasive specimen for COPD assessment.

BACKGROUND: People with COPD have been reported to bear a distinct airway microbiota from healthy individuals based on bronchoalveolar lavage (BAL) and sputum samples. Unfortunately, the collection of these samples involves relatively invasive procedures and is resource-demanding, limiting its regular use. Non-invasive samples from the upper airways could constitute an interesting alternative, but its relationship with COPD is still underexplored. We examined the merits of saliva to identify the typical profile of COPD oral bacteria and test its association with the disease. METHODS: Outpatients with COPD and age-sex matched healthy controls were recruited and characterised based on clinical parameters and 16S rRNA profiling of oral bacteria. A clustering analysis based on patients' oral bacteria beta-diversity and logistic regressions were performed to evaluate the association between oral bacteria composition and COPD. RESULTS: 128 individuals participated (70 patients and 58 controls). Differential abundance analyses showed differences in patients comparable to the ones previously observed in samples from the lower respiratory tract, i.e., an increase in Proteobacteria (particularly Haemophilus) and loss of microbiota diversity. An unsupervised clustering analysis separated patients in two groups based on microbiota composition differing significantly in the frequency of patients hospitalized due to severe acute exacerbation of COPD (AECOPD) and in the frequency of GOLD D patients. Furthermore, a low frequency of Prevotella was associated with a significantly higher risk of recent severe AECOPD and of being GOLD D. CONCLUSION: Salivary bacteria showed an association with COPD, particularly with severe exacerbations, supporting the use of this non-invasive specimen for future studies of heterogeneous respiratory diseases like COPD.

COPD profiles and treatable traits using minimal resources: identification, decision tree and stability over time.

BACKGROUND 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.

Age and Sex Differences in Balance Outcomes among Individuals with Chronic Obstructive Pulmonary Disease (COPD) at Risk of Falls.

No previous research has examined age and sex differences in balance outcomes in individuals with chronic obstructive pulmonary disease (COPD) at risk of falls. A secondary analysis of baseline data from an ongoing trial of fall prevention in COPD was conducted. Age and sex differences were analyzed for the Berg Balance scale (BBS), Balance Evaluation System Test (BEST test) and Activities-specific Balance Confidence Scale (ABC). Overall, 223 individuals with COPD were included. Females had higher balance impairments than males [BBS: mean (SD) = 47 (8) vs. 49 (6) points; BEST test: 73 (16) vs. 80 (16) points], and a lower confidence to perform functional activities [ABC = 66 (21) vs. 77 (19)]. Compared to a younger age (50-65 years) group, age >65 years was moderately associated with poor balance control [BBS (r = - 0.37), BEST test (r = - 0.33)] and weakly with the ABC scale (r = - 0.13). After controlling for the effect of balance risk factors, age, baseline dyspnea index (BDI), and the 6-min walk test (6-MWT) explained 38% of the variability in the BBS; age, sex, BDI, and 6-MWT explained 40% of the variability in the BEST test; And BDI and the 6-MWT explained 44% of the variability in the ABC scale. This study highlights age and sex differences in balance outcomes among individuals with COPD at risk of falls. Recognition of these differences has implications for pulmonary rehabilitation and fall prevention in COPD, particularly among females and older adults.

Interventions to Support Informal Caregivers of People with Chronic Obstructive Pulmonary Disease: A Systematic Literature Review.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) imposes tremendous challenges for both patients and informal caregivers. Caregivers are key players in the management of COPD. Recently, COVID-19 further increased reliance on informal caregivers who urgently need specific support. This systematic literature review aimed to systematically describe the content and explore the effects of interventions to support informal caregivers of people with COPD. METHODS: A mixed-methods systematic review was conducted. PubMed, Scopus, Web of Science, and EBSCO were searched. Studies implementing interventions supporting informal caregivers of people with COPD were included. Data were extracted and analysed in outcome domains and categories using framework analysis. RESULTS: Twenty (14 quantitative, 4 mixed-methods, and 2 qualitative) studies were included. Informal caregivers were mainly female (86%). Caregiving context was poorly/never described. Interventions included patient-caregiver dyads and never caregivers only. Informal caregivers were invited to participate if available. Interventions were delivered across all COPD phases (acute/stable/advanced) and settings (inpatient/outpatient/home), with a wide range of total length, frequency, and duration of sessions. All included education about the disease and its management. Discharge/action plans (n = 12); adherence to therapy and healthy lifestyles (n = 9); and family concerns and psychosocial issues (n = 7) were also commonly addressed. Only 9 (45%) studies reported caregiver-related outcomes, and overall positive effects were observed in 7/9 outcome domains, using a high variety of qualitative and qualitative methods. Often categories were addressed but not assessed. CONCLUSION: Interventions have a narrow scope (i.e., education) and have not been specifically designed to support informal caregivers. Current evidence showed positive effects, but high methodological heterogeneity exists. Future studies need to explore caregiver-tailored, taking into consideration gender differences; multicomponent; and flexibly administered interventions to effectively support COPD caregivers.

Physical activity for people living with dementia: carer outcomes and side effects from the perspectives of professionals and family carers.

BACKGROUND: Adherence to physical activity is challenging for people living with dementia, and largely dependent on carers' involvement. Carers are likely to support physical activity based on their perceived balance between benefits and potential side effects of such intervention for both patients and themselves. Professionals also have a role in terms of optimising such interventions not only for people with dementia but also their carers. AIMS: The present study aimed to identify the priorities of carers and professionals regarding (1) outcomes of physical activity for people living with dementia on carers and (2) side effects on patients and carers. METHODS: This was a two-round prioritisation exercise. In round one, participants were asked to rank, from most to least important, 2 lists of outcomes generated in a previous systematic review and qualitative study: (i) 10 outcomes on carers; (ii) 17 side effects on patients and carers. In round two, participants were asked to consider their own ranking in round one against the overall group ranking and re-rank both lists. RESULTS: 36 carers and 39 professionals completed both rounds. The carer outcomes ranked as highest priority were "carer feeling positive and satisfied", "carer improving wellbeing" and "making lives of carers easier". The most undesirable side effects were "becoming agitated and confused", "falling over" and "feeling discomfort and pain". DISCUSSION AND CONCLUSIONS: Carers and professionals value the potential reduction in carer burden that may occur as a consequence of the person with dementia engaging in physical activity. Behavioural and psychological symptoms, falls and pain are the most undesirable side effects of physical activity. Future research should aim to address, and consistently report on these outcomes.

Minimal Clinically Important Difference for Quadriceps Muscle Strength in People with COPD following Pulmonary Rehabilitation.

Quadriceps strength training is a key component of pulmonary rehabilitation (PR). Clinical interpretability of changes in muscle strength following PR is however limited due to the lack of cut-off values to define clinical improvement. This study estimated the minimal clinically important difference (MCID) for the isotonic and isometric quadriceps muscle strength assessed with the one-repetition maximum (1RM) and hand-held dynamometry (HHD) in people with chronic obstructive pulmonary disease (COPD) following PR.A secondary analysis of a real life non-randomised controlled study was conducted in people with COPD enrolled in a 12-week community-based PR programme. Anchor and distribution-based methods were used to compute the MCIDs. The anchors explored were the St. George's respiratory questionnaire (SGRQ) and the six-minute walk test (6MWT) using Pearson's correlations. Pooled MCIDs were computed using the arithmetic weighted mean (2/3 anchor, 1/3 distribution-based methods) and reported as absolute and/or percentage of change values.Eighty-nine people with COPD (84% male, 69.9 ± 7.9 years, FEV1 49.9 ± 18.9% predicted) were included. No correlations were found between changes in 1RM and the SGRQ neither between changes in HHD and the SGRQ and 6MWT (p > 0.05). Thus, anchor-based methods were used only in the MCID of the 1RM with the 6MWT as the anchor. The pooled MCIDs were 5.7Kg and 26.9% of change for the isotonic quadriceps muscle strength with 1RM and 5.2KgF for isometric quadriceps muscle strength assessed with HHD.The MCIDs found are estimates to improve interpretability of community-based PR effects on quadriceps muscle strength and may contribute to guide interventions.

Respiratory Function and Upper Extremity Functional Activity Performance in People With Dementia: A Shout for Attention.

The aim of this study was to explore respiratory function and upper extremity functional activity in people with dementia (PWD) and the associations between these variables and cognitive function (n = 22 institutionalized PWD, 28 community-dwelling PWD, and 26 healthy older people). All measures were significantly lower in PWD who live in an institution, such as a nursing home or long-term care facility or who attend adult daycare than PWD who live in a community dwelling . The values from these two groups were significantly lower than those from healthy older people. Moderate to high negative correlations between upper extremity functional activity and respiratory function (-.73 < rs < -.49) and cognitive function (rs = -.83), and between cognitive function and respiratory function (-.74 < rs < -.58) were identified (p < .001). When adjusted for cognitive function (-.38 < rs < -.29; p < .05), the association between upper limb functional activity and respiratory function decreased. The decline demonstrates the importance of physical activity and cognitive and respiratory function in PWD.

Lifestyle-Integrated Functional Exercise for People With Dementia: A Pilot Study.

The objective of this study was to explore the feasibility and preliminary effectiveness of the Lifestyle-Integrated Functional Exercise for People with Dementia (LiFE4D) on health-related physical fitness, cognitive function, physical activity, and respiratory and upper limb functions. A randomized controlled pilot study was conducted (control group: usual care; experimental group: usual care and LiFE4D). The feasibility of LiFE4D was determined considering recruitment, protocol acceptability, adherence, and safety. Measures of health-related physical fitness, cognitive function, physical activity, and respiratory and upper limb functions were assessed at the baseline and 3 months. Twelve participants (8 [66.7%] female, 82 [72.2-84] years) were included, six per group. Recruitment was challenging. LiFE4D was acceptable with excellent adherence and no major adverse events. Cardiorespiratory endurance (effect size = 1.64, 95% confidence interval [CI; 0.33, 2.95]) and balance (effect size = 1.46, 95% CI [0.19, 2.73]) improved after LiFE4D. LiFE4D seems to be feasible and safe, and it shows potential to significantly improve the health-related physical fitness of people with dementia.

Relationship between Distress Related to Caregiver Burden and Physical Activity in Informal Caregivers of Patients with COPD.

Chronic 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.

Automatic Classification of Adventitious Respiratory Sounds: A (Un)Solved Problem?

(1) Background: Patients with respiratory conditions typically exhibit adventitious respiratory sounds (ARS), such as wheezes and crackles. ARS events have variable duration. In this work we studied the influence of event duration on automatic ARS classification, namely, how the creation of the Other class (negative class) affected the classifiers' performance. (2) Methods: We conducted a set of experiments where we varied the durations of the other events on three tasks: crackle vs. wheeze vs. other (3 Class); crackle vs. other (2 Class Crackles); and wheeze vs. other (2 Class Wheezes). Four classifiers (linear discriminant analysis, support vector machines, boosted trees, and convolutional neural networks) were evaluated on those tasks using an open access respiratory sound database. (3) Results: While on the 3 Class task with fixed durations, the best classifier achieved an accuracy of 96.9%, the same classifier reached an accuracy of 81.8% on the more realistic 3 Class task with variable durations. (4) Conclusion: These results demonstrate the importance of experimental design on the assessment of the performance of automatic ARS classification algorithms. Furthermore, they also indicate, unlike what is stated in the literature, that the automatic classification of ARS is not a solved problem, as the algorithms' performance decreases substantially under complex evaluation scenarios.

Improving access to community-based pulmonary rehabilitation: 3R protocol for real-world settings with cost-benefit analysis.

BACKGROUND: Pulmonary rehabilitation (PR) has demonstrated patients' physiological and psychosocial improvements, symptoms reduction and health-economic benefits whilst enhances the ability of the whole family to adjust to illness. However, PR remains highly inaccessible due to lack of awareness of its benefits, poor referral and availability mostly in hospitals. Novel models of PR delivery are needed to enhance its implementation while maintaining cost-efficiency. We aim to implement an innovative community-based PR programme and assess its cost-benefit. METHODS: A 12-week community-based PR will be implemented in primary healthcare centres where programmes are not available. Healthcare professionals will be trained. 73 patients with CRD and their caregivers (dyads patient-caregivers) will compose the experimental group. The control group will include dyads age- and disease-matched willing to collaborate in data collection but not in PR. Patients/family-centred outcomes will be dyspnoea (modified Medical Research Council Questionnaire), fatigue (Checklist of individual strength and Functional assessment of chronic illness therapy - fatigue), cough and sputum (Leicester cough questionnaire and Cough and sputum assessment questionnaire), impact of the disease (COPD Assessment Test), emotional state (The Hospital Anxiety and Depression Scale), number of exacerbations, healthcare utilisation, health-related quality of life and family adaptability/cohesion (Family Adaptation and Cohesion Scale). Other clinical outcomes will be peripheral (biceps and quadriceps-hand held dynamometer, 1 or 10 repetition-maximum) and respiratory (maximal inspiratory and expiratory pressures) muscle strength, muscle thickness and cross sectional area (biceps brachialis, rectus femoris and diaphragm-ultrasound imaging), exercise capacity (six-minute walk test and one-minute sit to stand test), balance (brief-balance evaluation systems test) and physical activity (accelerometer). Data will be collected at baseline, at 12 weeks, at 3- and 6-months post-PR. Changes in the outcome measures will be compared between groups, after multivariate adjustment for possible confounders, and effect sizes will be calculated. A cost-benefit analysis will be conducted. DISCUSSION: This study will enhance patients access to PR, by training healthcare professionals in the local primary healthcare centres to conduct such programmes and actively involving caregivers. The cost-benefit analysis of this intervention will provide an evidence-based insight into the economic benefit of community-based PR in chronic respiratory diseases. TRIAL REGISTRATION: The trial was registered in the ClinicalTrials.gov U.S. National Library of Medicine, on 10th January, 2019 (registration number: NCT03799666 ).

Triangulated perspectives on outcomes of pulmonary rehabilitation in patients with COPD: a qualitative study to inform a core outcome set.

INTRODUCTION:: Pulmonary rehabilitation implies a comprehensive assessment. Although several outcomes are commonly measured, those are selected mainly by health professionals and researchers, with the voice of patients and informal caregivers being minimally captured. Qualitative studies are fundamental to enhance our knowledge on perspectives of different stakeholders involved in pulmonary rehabilitation. OBJECTIVE:: This study aimed to explore the views of different stakeholders on outcomes of pulmonary rehabilitation, contributing to one of the stages of a core outcome set for pulmonary rehabilitation in patients with chronic obstructive pulmonary disease (COPD). METHODS:: Semi-structured interviews were conducted with 12 patients with COPD, 11 informal carers and 10 health professionals. Data were analysed with content analysis, followed by thematic analysis to gain deeper understanding of the different perspectives. RESULTS:: A total of 44 outcomes were identified, being the most reported 'improving functional performance' (67%) and 'reducing and taking control over dyspnoea' (64%). Five relevant themes across stakeholders were generated: having a healthy mind in a healthy body; I can('t) do it; feeling fulfilled; knowing more, doing better and avoiding doctors and expenses. Although perspectives were mostly consensual, some outcomes were only valued by health professionals (e.g. pulmonary function) or by patients and informal carers (e.g. quality of sleep). CONCLUSION:: Views of the different stakeholders on outcomes of pulmonary rehabilitation were similar although, some specificities existed. Comprehensive assessments are needed to reflect what is valued by the different stakeholders in pulmonary rehabilitation. This study contributed to a future core outcome set in this field.

The Kinematic Chain of Arm Elevation Is Impaired in Patients with Chronic Obstructive Pulmonary Disease.

Patients with chronic obstructive pulmonary disease (COPD) often complain about difficulties in performing activities with their arms above shoulders height. These difficulties have been associated with increased cardiorespiratory demand and altered lung mechanics; however, musculoskeletal-related mechanisms may also contribute to constrain the mechanics of the upper body quadrant, increasing the effort to perform the activities. This exploratory research aimed to assess potential changes in the kinematic chain of arm elevation in patients with COPD. A secondary analysis from a cross-sectional exploratory case-control and prediction study was conducted in 15 patients with COPD (2 females) and 15 controls (8 females) matched for age and body mass index. The sagittal alignment and active range of motion (ROM) of the head, thoracic spine and shoulder complex were measured, using a computer software, in digital lateral photographs obtained in three different testing positions: arms at rest, arms at 90° of shoulder flexion and full arm elevation. From rest to full arm elevation, both groups moved from a more flexed to a less flexed or more upright thoracic spine position (∼7°, p < 0.001, 0.419 < ηp2 <0.767). However, the COPD group showed significantly less shoulder flexion (∼12°, p = 0.007, d = 1.05) and thoracic spine extension (∼6°, p = 0.015, ηp2 = 0.139) ROM than the control group in the full arm elevation position. These findings suggest that this population may show changes in the kinematic chain of arm elevation that possibly contribute to arm movement-related complains and limited performance in their daily living.

Evaluating physical activity in dementia: a systematic review of outcomes to inform the development of a core outcome set.

Background: physical activity is recommended for people living with dementia, but evidence for the positive effects of physical activity is limited by the use of heterogeneous outcomes and measurement tools. This systematic literature review aimed to summarise previously reported outcomes and identify the measurement tools used most frequently in physical activity interventions for people with dementia. Methods: literature searches were conducted in April 2015, on Delphis and Medline. Qualitative, quantitative and mixed methods studies reporting on any type of physical activity, in any setting, across types of dementia, stages of disease progression and published from 2005 onwards were included. A content analysis approach was used to report on the frequency of reported outcomes and measurement tools. Results: the 130 included studies reported on 133 different outcome domains and 267 different measurement tools. 'Functional abilities and independence' (n = 69), 'Global cognitive function' (n = 65), 'Balance' (n = 43), 'Global behavioural symptoms of dementia' (n = 42) and 'Health-related quality of life' (n = 40) were the most frequently reported outcome domains. 'Enjoyment' was the outcome most frequently sought by patients and carers. Conclusion: the need for the development and implementation of a Core Outcome Set has been reinforced. Ahead of the completion of the Core Outcome Set, researchers and clinicians are advised to measure the impact of physical activity interventions on these frequently reported outcome domains.

Minimal Important and Detectable Differences of Respiratory Measures in Outpatients with AECOPD†.

Interpreting clinical changes during acute exacerbations of chronic obstructive pulmonary disease (AECOPD) is challenging due to the absence of established minimal detectable (MDD) and important (MID) differences for most respiratory measures. This study established MDD and MID for respiratory measures in outpatients with AECOPD following pharmacological treatment. COPD assessment test (CAT), modified Borg scale (MBS), modified British Medical Research Council (mMRC) questionnaire, peripheral oxygen saturation (SpO2), computerised respiratory sounds and forced expiratory volume in one second (FEV1) were collected within 24-48 hour of an AECOPD and after 45 days of pharmacological treatment. MID and MDD were calculated using anchor- (receiver operating characteristic and linear regression analysis) and distribution-based methods (effect size, SEM, 0.5*SD and MDC95) and pooled using Meta XL. Forty-four outpatients with AECOPD (31♂; 68.2 ± 9.1 years; FEV1 51.1 ± 20.3%predicted) participated. Significant correlations with CAT were found for the MBS (r = 0.34), mMRC (r = 0.39) and FEV1 (r = 0.33), resulting in MIDs of 0.8, 0.5-0.6 and 0.03L, respectively. MDD of 0.5-1.4 (MBS), 0.4-1.2 (mMRC), 0.10-0.28L (FEV1), 3.6-10.1% (FEV1%predicted), 0.9-2.4% (SpO2), 0.7-1.9 (number of inspiratory crackles), 1.1-4.5 (number of expiratory crackles), 7.1-25.8% (inspiratory wheeze rate) and 11.8-63.0% (expiratory wheeze rate) were found. Pooled data of MID/MDD showed that improvements of 0.9 for the MBS, 0.6 for the mMRC, 0.15L for the FEV1, 7.6% for the FEV1%predicted, 1.5% for the SpO2, 1.1 for the inspiratory and 2.4 for the number of expiratory number of crackles, 14.1% for the inspiratory and 32.5% for the expiratory wheeze rate are meaningful following an AECOPD managed with pharmacological treatment on an outpatient basis.