The burden of chronic obstructive pulmonary disease (COPD) on society is increasing. Healthcare systems should support patients with COPD in achieving an optimal quality of life, while limiting the costs of care. As a consequence, a shift from hospital care to home care seems inevitable. Therefore, patients will have to rely to a greater extent on informal caregivers. Patients with COPD as well as their informal caregivers are confronted with multiple limitations in activities of daily living. The presence of an informal caregiver is important to provide practical help and emotional support. However, caregivers can be overprotective, which can make patients more dependent. Informal caregiving may lead to symptoms of anxiety, depression, social isolation and a changed relationship with the patient. The caregivers' subjective burden is a major determinant of the impact of caregiving. Therefore, the caregiver's perception of the patient's health is an important factor. This article reviews the current knowledge about these informal caregivers of patients with COPD, the impact of COPD on their lives and their perception of the patient's health status. @ERSpublications Informal caregivers play important roles: their needs should be part of research and clinical care for COPD patients http://ow.ly/PSl7F

Background: The objective of this study was to compare fatigue levels between subjects with and without COPD, and to investigate the relationship between fatigue, demographics, clinical features and disease severity. Methods: A total of 1290 patients with COPD [age 65 ± 9 years, 61% male, forced expiratory volume in 1 s (FEV1) 56 ± 19% predicted] and 199 subjects without COPD (age 63 ± 9 years, 51% male, FEV1 112 ± 21% predicted) were assessed for fatigue (Checklist Individual Strength-Fatigue), demographics, clinical features and disease severity. Results: Patients with COPD had a higher mean fatigue score, and a higher proportion of severe fatigue (CIS-Fatigue score 35 ± 12 versus 21 ± 11 points, p < 0.001; 49 versus 10%, p < 0.001). Fatigue was significantly, but poorly, associated with the degree of airflow limitation [FEV1 (% predicted) Spearman correlation coefficient = −0.08, p = 0.006]. Multiple regression indicated that 30% of the variance in fatigue was explained by the predictor variables. Conclusions: Severe fatigue is prevalent in half of the patients with COPD, and correlates poorly with the degree of airflow limitation. Future studies are needed to better understand the physical, psychological, behavioural, and systemic factors that precipitate or perpetuate fatigue in COPD.

A high proportion of patients with chronic obstructive pulmonary disease (COPD) experience problems during the performance of activities of daily living (ADLs). We aimed to determine the effects of a comprehensive 8-wk pulmonary rehabilitation program on the physiologic response to and performance of ADLs in patients with COPD. Before and after pulmonary rehabilitation, 31 patients with COPD [71% men; mean age: 64.2 (SD 8.4) years; mean forced expiratory volume in the first second: 54.6 (SD 19.9) % predicted] performed physical function tests, the Canadian Occupational Performance Measure (COPM), and an ADL test consisting of the following: putting on socks, shoes, and vest; stair climbing; washing up four dishes, cups, and saucers; doing groceries and putting away groceries in a cupboard; folding eight towels; and vacuum cleaning for 4 min. Metabolic load, ventilation, and dynamic hyperinflation were assessed using an Oxycon mobile device. In addition, symptoms of dyspnea and fatigue and time to complete ADLs were recorded. After rehabilitation, patients with COPD used a significantly lower proportion of their peak aerobic capacity and ventilation to perform ADLs, accompanied by lower Borg scores for dyspnea and fatigue. Furthermore, patients needed significantly less time to complete ADLs. Dynamic hyperinflation occurred during the performance of ADLs, which did not change following pulmonary rehabilitation. Changes in physical function, including six-min walk distance, constant work rate test, quadriceps muscle strength, and COPM were significantly correlated with change in average total oxygen uptake during the performance of the ADL test. A comprehensive pulmonary rehabilitation program can improve the physiologic response to and actual performance of ADLs in patients with COPD. NEW & NOTEWORTHY A high proportion of patients with chronic obstructive pulmonary disease (COPD) experience problems during the performance of activities of daily living (ADLs). This study clearly demonstrated that a comprehensive pulmonary rehabilitation program can improve the performance of ADLs in patients with COPD, indicated by a significantly shorter time to perform ADLs and a lower metabolic load and dyspnea sensation.

The application of these new cut-points would reclassify about one-third of the patients with COPD and, thus, would impact on individual disease management. Further validation in prospective studies of these new values are needed.

Dutch Trial Register (NTR3941).

Background and objective Loved ones (proxies) of patients with COPD are confronted with the patients’ limitations in activities of daily living (ADLs). However, it remains unknown whether proxies are able to correctly estimate the problematic ADLs of the patient. Therefore, we aimed to investigate the level of agreement between patient‐reported and proxy‐reported problematic ADLs of the patient. Methods Stable outpatients with moderate to very severe COPD (n = 194) and their resident proxies (n = 194) were included in this cross‐sectional study. Patients’ problematic ADLs were assessed in the domains ‘self‐care’, ‘mobility’, ‘productivity’ and ‘leisure’ using the Canadian Occupational Performance Measure (COPM) in both patients and resident proxies. Furthermore, the perceived performance and satisfaction for important problematic ADLs were rated on a 10‐point scale. Results In total, 830 problematic ADLs were reported by patients, and 735 by proxies. Agreement in reporting problematic ADLs within a domain was poor (productivity and leisure; κ; = 0.20 and 0.16, respectively) to fair (self‐care and mobility; κ = 0.32 and 0.22, respectively). Similar performance and satisfaction scores, for equally reported problematic ADLs, were given by 24.0% and 17.6% of the pairs, respectively. Conclusion Proxies were often not able to identify the patients’ most important problematic ADLs. Moreover, when patient and proxy agreed about the presence of a specific problematic ADL, the perception of the performance and the satisfaction with that performance differed within most pairs. This emphasizes the importance of involving proxies, besides patients alone, in identifying patients’ problematic ADLs.

BackgroundAlthough proxies of patients with chronic obstructive pulmonary disease (COPD) need health-related knowledge to support patients in managing their disease, their current level of knowledge remains unknown. We aimed to compare health-related knowledge (generic and COPD-related knowledge) between patients with COPD and their resident proxies.MethodsIn this cross-sectional study, we included stable patients with moderate to very severe COPD and their resident proxies (n = 194 couples). Thirty-four statements about generic health and COPD-related topics were assessed in patients and proxies separately. Statements could be answered by ‘true’, ‘false’, or ‘do not know’. This study is approved by the Medical Research Ethics Committees United (MEC-U), the Netherlands (NL42721.060.12/M12–1280).ResultsPatients answered on average 17% of the statements incorrect, and 19% with ‘do not know’. The same figure (19%) for the incorrect and unknown statements was shown by proxies. Patients who attended pulmonary rehabilitation previously answered more statements correct (about three) compared to patients who did not attend pulmonary rehabilitation. More correct answers were reported by: younger patients, patients with a higher level of education, patients who previously participated in pulmonary rehabilitation, patients with better cognitive functioning, and patients with a COPD diagnosis longer ago.ConclusionsProxies of patients with COPD as well as patients themselves answer about two third of 34 knowledge statements about COPD correct. So, both patients and proxies seem to have an incomplete knowledge about COPD and general health. Therefore, education about general health and COPD should be offered to all subgroups of patients with COPD and their proxies.Trial registrationThis study is registered in the Dutch Trial Register (NTR3941). Registered 19 April 2013.

IntroductionChronic obstructive pulmonary disease (COPD) represents an important public health challenge. Patients are confronted with limitations during activities of daily living (ADLs). Resident loved ones of patients with COPD may be uniquely positioned to witness these limitations. COPD may have an impact on not only the patients’ life, but also on the lives of the resident loved ones. Furthermore, COPD exacerbation-related hospital admissions often occur in patients with COPD. However, whether and to what extent these admissions influence resident loved ones’ burden and health status remains currently unknown. Therefore, the primary objectives of this study are to investigate the differences between patients with COPD and resident loved ones’ perceptions of patients’ health status and problematic ADLs and to study prospectively the effects of a COPD exacerbation on resident loved ones’ perceptions of patients’ health status and problematic ADLs.Methods and analysisAn observational, longitudinal study will be performed in 192 patients with COPD and their 192 resident loved ones. Primary outcomes are daily functioning, ADL, disease-specific health status, generic health status and dyspnoea. These will be assessed during home visits at baseline and after 12 months. Additional home visits will be performed when a COPD exacerbation-related hospital admission occurs during the 12-month follow-up period.Ethics and disseminationThis protocol was approved by the Medical Ethics Committee of the Catharina Hospital Eindhoven, the Netherlands (NL42721.060.12/M12-1280) and is registered in the Dutch Trial Register (NTR3941).