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Nienke Nakken,1 Daisy JA Janssen,1,2 Monique van Vliet,3 Geeuwke J de Vries,4 Giny AL Clappers-Gielen,5 Arent Jan Michels,6 Jean WM Muris,7 Jan H Vercoulen,8 Emiel FM Wouters,1,9 Martijn A Spruit1 1Department of Research and Education, CIRO, Horn, 2Centre of Expertise for Palliative Care, Maastricht University Medical Centre+ (MUMC+), Maastricht, 3Department of Respiratory Medicine, Zuyderland, Heerlen, 4Department of Respiratory Medicine, Zuyderland, Sittard-Geleen, 5Department of Respiratory Medicine, Elkerliek Hospital, Helmond, 6Department of Respiratory Medicine, St Anna Hospital, Geldrop, 7Department of Family Medicine, CAPHRI School of Public Health and Primary Care, Maastricht University, Maastricht, 8Department of Medical Psychology and Department of Pulmonary Diseases, Radboud University Nijmegen Medical Centre, Nijmegen, 9Department of Respiratory Medicine, Maastricht University Medical Centre+ (MUMC+), Maastricht, the Netherlands Background/objectives: Chronic obstructive pulmonary disease (COPD) not only affects patients but also their partners. Gender-related differences in patients with COPD are known, for instance regarding symptoms and quality of life. Yet, research regarding gender differences in partners of patients with COPD has been conducted to a lesser extent, and most research focused on female partners. We aimed to investigate differences between male and female partners of patients with COPD regarding their own characteristics and their perceptions of patients’ characteristics.Design: Cross-sectional study.Setting: Four hospitals in the Netherlands.Participants: One hundred and eighty-eight patient–partner couples were included in this cross-sectional study.Measurements: General and clinical characteristics, health status, care dependency, symptoms of anxiety and depression, social support, caregiver burden, and coping styles were assessed during a home visit.Results: Female partners had more symptoms of anxiety and a worse health status than male partners. Social support and caregiver burden were comparable, but coping styles differed between male and female partners. Female partners thought that male patients were less care dependent and had more symptoms of depression, while these gender differences did not exist in patients themselves.Conclusion: Health care providers should pay attention to the needs of all partners of patients with COPD, but female partners in particular. Obtaining an extensive overview of the patient–partner couple, including coping styles, health status, symptoms of anxiety, and caregiver burden, is necessary to be able to support the couple as effectively as possible. Keywords: COPD, family caregiving, gender, partners

The study aim was to identify the most problematic self--reported activities of daily living (ADLs). In a retrospective study, 1935 problematic ADLs were reported by 538 clients with 95% experiencing two or more problematic ADLs. Problematic ADLs were assessed by occupational therapists using the Canadian Occupational Performance Measure with walking (67%), household activities (41%), and climbing the stairs (41%) identified as the most prevalent problematic ADLs. Significant but weak associations were found between clinical determinants (e.g. physical, psychosocial) and problematic ADLs. The wide variety of problematic ADLs and the absence of a strong association with clinical determinants emphasizes the need for using individualized interview-based performance measures in clients with asthma.

Introduction: In patients with chronic obstructive pulmonary disease (COPD), loneliness and social isolation are associated with increased morbidity and decreased mobility, self-reliance, and health-related quality of life. Social support has been shown to improve these outcomes., Aims: This cross-sectional study aimed to investigate the level of experienced social support and the clinical outcomes associated with inadequate social support among patients with COPD with a resident loved one., Methods: Level of social support was assessed with the Medical Outcomes Study - Social Support Survey (MOS-SSS) in patients with COPD with a resident loved one. Patients were sub-grouped into adequate or inadequate social support. Multiple clinical outcomes were assessed, including lung function, degree of dyspnoea, health status, symptoms of anxiety and depression, the degree of care dependency, functional status, and mobility., Results: The study included 191 Dutch patients with COPD (53.4% men, age: 65.6 ± 8.9 years, FEV 1 : 47.3 ± 17.7% predicted). Eighteen percent of the patients reported inadequate social support. Patients with inadequate social support reported a significantly symptom severity of COPD (p = 0.004), a higher care dependency level (p = 0.04) and a higher level of depression (p = 0.004) compared to patients with adequate social support. Other traits were comparable for both groups., Conclusion: Patients with COPD with a resident loved one who perceive an inadequate level of social support are more likely to report a higher impact of COPD, a higher care dependency and symptoms of depression. Other characteristics are comparable with patients who perceive adequate social support., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

Background.: Occupational therapy (OT) may be an important intervention in patients with COPD, but studies show conflicting results., Purpose.: To evaluate the effectiveness of home-based monodisciplinary OT in COPD patients., Method.: We conducted an observational clinical study. Main outcomes were the mean differences in the Canadian Occupational Performance Measure (COPM) performance and satisfaction scores, pre and post intervention., Findings.: Pre- and postintervention data were obtained from 41 patients. Statistically significant increases were observed in COPM performance (5.0 ± 1.1 versus 6.9 ± 0.9; P<0.001) and satisfaction (4.6 ± 1.3 versus 6.9 ± 1.0; P<0.001). The most frequently reported occupational performance problems were found in the domains of productivity (47%) and mobility (40%), fewer in self-care (10%) and the least in leisure (3%)., Implications.: Home-based monodisciplinary OT can contribute significantly to the improvement of daily functioning of patients with COPD. OT should therefore be considered more often as part of the integrated management of these patients.

Introduction: Persons with chronic obstructive pulmonary disease (COPD) are often limited in performing their activities of daily living (ADLs). However, it remains unknown whether and to what extent problematic ADLs change over time and whether exacerbation-related hospitalisations affect problematic ADLs. Therefore, we investigated self-reported problematic ADLs of persons with COPD during 1 year of usual care (i.e. without a specific experimental intervention)., Methods: Stable persons with moderate to very severe COPD (n = 137) were included in this longitudinal study (registered in the Dutch Trial Register [NTR 3941]). Participants were visited at home at baseline and after 1 year. Participants with an exacerbation-related hospitalisation during follow-up were visited additionally within 2 weeks after hospital discharge. During all visits, participants' personalised problematic ADLs were assessed using the Canadian Occupational Performance Measure (COPM), and perceived performance and satisfaction of important problematic ADLs were rated on a 10-point scale., Results: In total, 90% of the participants reported at least one new important problematic ADL after 1 year. In the subgroup of participants with an exacerbation-related hospitalisation (n = 31), 92% of the participants reported new problematic ADLs 2 weeks after discharge and 90% reported new problematic ADLs again after 1 year. Only the satisfaction score of problematic ADLs as mentioned during baseline improved after 1-year follow-up in all participants (p = .002) and in participants without an exacerbation-related hospitalisation (n = 106; p = .014)., Conclusion: Problematic ADLs changed during 1 year of usual care, which underlines the need for regular assessment of problematic ADLs and referral to treatment options like monodisciplinary occupational therapy and/or a comprehensive pulmonary rehabilitation programme., (© 2020 Occupational Therapy Australia.)

Background/aim: Proxies of patients with COPD are often unable to identify the patients' most important problematic activities of daily life (ADLs). The aim was to explore causes of perceptual differences between patients with COPD and their proxies about the problematic ADLs of the patient., Methods: Ten open structured interviews were conducted in the presence of both the patient and proxy. Patients' five most important problematic ADLs identified by the couple were compared and discussed. For data analysis, open coding, axial coding and selective coding were conducted., Results: Ten main causes were identified: differences in the level of satisfaction, or acceptance; estimation of own capabilities; problematic ADL goes unnoticed; proxy is not present during problematic ADL; problematic ADL is not performed (often or anymore), or not (longer) talked about; masked by another problematic ADL; value judgement; solution for problematic ADL., Conclusion: The causes of perceptual differences between patients and proxies about patients' problematic ADLs were related to both the patient's and the proxy's perception., (© 2018 Occupational Therapy Australia.)

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.

Background: Patients with chronic obstructive pulmonary disease (COPD) can be classified into groups A/C or B/D based on symptom intensity. Different threshold values for symptom questionnaires can result in misclassification and, in turn, different treatment recommendations. The primary aim was to find the best fitting cut-points for Global initiative for chronic Obstructive Lung Disease (GOLD) symptom measures, with an modified Medical Research Council dyspnea grade of 2 or higher as point of reference., Methods: After a computerized search, data from 41 cohorts and whose authors agreed to provide data were pooled. COPD studies were eligible for analyses if they included, at least age, sex, postbronchodilator spirometry, modified Medical Research Council, and COPD Assessment Test (CAT) total scores., Main Outcomes: Receiver operating characteristic curves and the Youden index were used to determine the best calibration threshold for CAT, COPD Clinical Questionnaire, and St. Georges Respiratory Questionnaire total scores. Following, GOLD A/B/C/D frequencies were calculated based on current cut-points and the newly derived cut-points., Findings: A total of 18,577 patients with COPD [72.0% male; mean age: 66.3 years (standard deviation 9.6)] were analyzed. Most patients had a moderate or severe degree of airflow limitation (GOLD spirometric grade 1, 10.9%; grade 2, 46.6%; grade 3, 32.4%; and grade 4, 10.3%). The best calibration threshold for CAT total score was 18 points, for COPD Clinical Questionnaire total score 1.9 points, and for St. Georges Respiratory Questionnaire total score 46.0 points., Conclusions: 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., (Copyright © 2017 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Although 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., Methods: In 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)., Results: Patients 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., Conclusions: Proxies 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 Registration: This study is registered in the Dutch Trial Register ( NTR3941 ). Registered 19 April 2013.

Background: Resident loved ones of patients with COPD can play an important role in helping these patients engage in physical activity. We aimed to compare activity levels and exercise motivation between patients with COPD and their resident loved ones; to compare the same outcome measures in patients after stratification for the physical activity level of the loved ones; and to predict the likelihood of being physically active in patients with a physically active resident loved one., Methods: One hundred twenty-five patient/loved one dyads were cross-sectionally and simultaneously assessed. Sedentary behavior, light activities, and moderate to vigorous physical activity (MVPA) were measured with a triaxial accelerometer during free-living conditions for at least 5 days. Five exercise-motivation constructs were investigated: amotivation, external regulation, introjected regulation, identified regulation, and intrinsic regulation., Results: Patients spent more time in sedentary behavior and less time in physical activity than their loved ones (P < .0001). More intrinsic regulation was observed in loved ones compared with patients (P = .003), with no differences in other constructs. Despite similar exercise motivation, patients with an active loved one spent more time in MVPA (mean 31 min/d; 95% CI, 24-38 min/d vs mean, 18 min/d; 95% CI, 14-22 min/d; P = .002) and had a higher likelihood of being active (OR, 4.36; 95% CI, 1.41-13.30; P = .01) than did patients with an inactive loved one after controlling for age, BMI, and degree of airflow limitation., Conclusions: Patients with COPD are more physically inactive and sedentary than their loved ones, despite relatively similar exercise motivation. Nevertheless, patients with an active loved one are more active themselves and have a higher likelihood of being active., Trial Registry: Dutch Trial Register (NTR3941)., (Copyright © 2017 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.)

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., (© 2016 Asian Pacific Society of Respirology.)

Objectives: Resident relatives of patients with chronic obstructive pulmonary disease (COPD) may play a major role in obtaining a healthy lifestyle for patients. Little is known about resident relatives. This study aimed to compare health status, morbidities, care dependency, and mobility between patients with COPD and their resident relatives., Design: Cross-sectional study., Participants: Stable patients with moderate to very severe COPD (n = 194) and their resident relatives (n = 194) were visited in their home environment., Measurements: Post-bronchodilator spirometry was assessed and generic health status was measured using the EuroQol-5 Dimensions and the Assessment of Quality of Life with 8 dimensions. Care dependency was measured using the Care Dependency Scale. Mobility was measured using the Timed "Up and Go" test (TUG). Morbidities (COPD, hypertension, anxiety and depression, obesity, and muscle wasting) were determined using accepted disease cutoff points and/or receiving specific treatment., Results: Age (patients: 66.0 [8.7], resident relatives: 64.8 [9.7]) and gender (male patients: 53%, male resident relatives: 45%) were comparable. Patients had worse generic health status, higher level of care dependency, and worse mobility. 29% of the resident relatives had airflow limitation based on the Tiffeneau index and 19% based on the lower limit of normal, 33% were current smokers, and 92% had at least one chronic condition. Resident relatives more frequently had hypertension (46% versus 69%)., Conclusion: Resident relatives of patients with COPD are often current smokers and often have undiagnosed morbidities. Although their health status is better compared with patients, their disease management and health behavior should also be considered when advising patients in obtaining a healthier lifestyle and also when involving them as informal caregivers., (Copyright © 2016 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Family caregivers already have a paramount role in daily care for patients with chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), or chronic renal failure (CRF). To date, it remains unknown whether and to what extent the experience of caregiving changes over time., Objectives: To examine changes in caregiver burden and positive aspects of caregiving during 1-year follow-up in patients with advanced COPD, CHF or CRF and to study determinants of changes in caregiver burden and positive aspects of caregiving., Methods: In this longitudinal observational study, patients and their family caregivers who had complete data at baseline and 12 months (n = 104) and family caregivers of patients who died during 1-year follow-up (n = 15) were included. Caregiver burden and positive aspects of caregiving were assessed using the Family Appraisal of Caregiving Questionnaire for Palliative Care (FACQ-PC). Domain scores were classified into three categories, and baseline characteristics were compared between these categories., Results: A majority of the individuals showed 1-year changes in FACQ-PC domain scores. These individual changes were not explained by demographic or clinical patient characteristics at baseline or changes in patient characteristics during 1-year follow-up. Furthermore, caregiver burden was higher for caregivers of patients who died during 1-year follow-up compared to caregivers whose relative completed 1-year follow-up., Conclusion: This study showed that caregiver burden and positive aspects of caregiving can change over time, and these changes are highly individual. Therefore, healthcare providers should regularly pay attention to family caregivers, regardless the patients' characteristics., (© 2015 Nordic College of Caring Science.)

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., (Copyright ©ERS 2015.)

Introduction: Chronic 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 Analysis: An 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 Dissemination: This 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)., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)