Patients with COPD and their resident loved ones:Home Sweet Home ?

Patients with chronic obstructive pulmonary disease (COPD) experience symptoms such as shortness of breath and fatigue, which can inhibit their daily activities. Relatives who live with these patients often play an important caregiving role. The Home Sweet Home study found that 29% of these relatives had a respiratory condition themselves, 33% were smokers, and 92% had at least one chronic condition. The relatives struggled to name the patient's key problem activity and the reasons for this were very diverse. Relatives who live with the patient must become more involved in the patient's COPD treatment

Family caregiving during 1-year follow-up in individuals with advanced chronic organ failure

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

Physical, Psychological, and Social Factors Associated with Exacerbation-Related Hospitalization in Patients with COPD

Background and objective: Exacerbation(s) of chronic obstructive pulmonary disease (eCOPD) entail important events describing an acute deterioration of respiratory symptoms. Changes in medication and/or hospitalization are needed to gain control over the event. However, an exacerbation leading to hospitalization is associated with a worse prognosis for the patient. The objective of this study is to explore factors that could predict the probability of an eCOPD-related hospitalization. Methods: Data from 128 patients with COPD included in a prospective, longitudinal study were used. At baseline, physical, emotional, and social status of the patients were assessed. Moreover, hospital admission during a one year follow-up was captured. Different models were made based on univariate analysis, literature, and practice. These models were combined to come to one final overall prediction model. Results: During follow-up, 31 (24.2%) participants were admitted for eCOPD. The overall model contained six significant variables: currently smoking (OR = 3.93), forced vital capacity (FVC; OR = 0.97), timed-up-and-go time (TUG-time) (OR = 14.16), knowledge (COPD knowledge questionnaire, percentage correctly answered questions (CIROPD%correct)) (<60% (OR = 1.00); 60%–75%: (OR = 0.30); >75%: (OR = 1.94), eCOPD history (OR = 9.98), and care dependency scale (CDS) total score (OR = 1.12). This model was well calibrated (goodness-of-fit test: p = 0.91) and correctly classified 79.7% of the patients. Conclusion: A combination of TUG-time, eCOPD-related admission(s) prior to baseline, currently smoking, FVC, CDS total score, and CIROPD%correct allows clinicians to predict the probability of an eCOPD-related hospitalization

Gender differences in partners of patients with COPD and their perceptions about the patients

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

Knowledge gaps in patients with COPD and their proxies

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

Patient versus proxy-reported problematic activities of daily life in patients with COPD

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; kappa = 0.20 and 0.16, respectively) to fair (self-care and mobility; kappa = 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.</p

Changes in problematic activities of daily living in persons with COPD during 1 year of usual care

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