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

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).

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Objectives: To experiment with new approaches of collaboration in healthcare delivery, local authorities implement new models of care. Regarding the local decision context of these models, multi-criteria decision analysis (MCDA) may be of added value to cost-utility analysis (CUA), because it covers a wider range of outcomes. This study compares the 2 methods using a side-by-side application.Methods: A new Dutch model of care, Primary Care Plus (PC1), was used as a case study to compare the results of CUA and MCDA. Data of patients referred to PC1 or care-as-usual were retrieved by questionnaires and administrative databases with a 3-month follow-up. Propensity score matching together with generalized linear regression models was used to reduce confounding. Univariate and probabilistic sensitivity analyses were performed to explore uncertainty in the results.Results: Although both methods indicated PC1 as the dominant alternative, complementary differences were observed. MCDA provided additional evidence that PC1 improved access to care (standardized performance score of 0.742 vs 0.670) and that improvement in health-related quality of life was driven by the psychological well-being component (standardized performance score of 0.710 vs 0.704). Furthermore, MCDA estimated the budget required for PC1 to be affordable in addition to preferable (V521.42 per patient). Additionally, MCDA was less sensitive to the utility measures used.Conclusions: MCDA may facilitate an auditable and transparent evaluation of new models of care by providing additional information on a wider range of outcomes and incorporating affordability. However, more effort is needed to increase the usability of MCDA among local decision makers.

Background: The substitution of healthcare is a way to control rising healthcare costs. The Primary Care Plus (PC+) intervention of the Dutch 'Blue Care' pioneer site aims to achieve this feat by facilitating consultations with medical specialists in the primary care setting. One of the specialties involved is dermatology. This study explores referral decisions following dermatology care in PC+ and the influence of predictive patient and consultation characteristics on this decision. Methods: This retrospective study used clinical data of patients who received dermatology care in PC+ between January 2015 and March 2017. The referral decision following PC+, (i.e., referral back to the general practitioner (GP) or referral to outpatient hospital care) was the primary outcome. Stepwise logistic regression modelling was used to describe variations in the referral decisions following PC+, with patient age and gender, number of PC+ consultations, patient diagnosis and treatment specialist as the predicting factors. Results: A total of 2952 patients visited PC+ for dermatology care. Of those patients with a registered referral, 80.2% (N = 2254) were referred back to the GP, and 19.8% (N = 558) were referred to outpatient hospital care. In the multivariable model, only the treating specialist and patient's diagnosis independently influenced the referral decisions following PC+. Conclusion: The aim of PC+ is to reduce the number of referrals to outpatient hospital care. According to the results, the treating specialist and patient diagnosis influence referral decisions. Therefore, the results of this study can be used to discuss and improve specialist and patient profiles for PC+ to further optimise the effectiveness of the initiative.