Search

Aim: The aim of this quantitative, cross-sectional study was to identify barriers and facilitators to end-of-life communication experienced by family caregivers of patients with advanced chronic organ failure and to examine agreement in barriers and facilitators between family caregivers and patients., Methods: Patients and family caregivers were interviewed using the barriers and facilitators questionnaire. Agreement was determined using intraclass correlation coefficients for continuous variables and Cohen's kappa for categorical variables., Results: A total of 158 patients and family caregiver dyads were included. The most important barriers for family caregivers were related to uncertainty about expected care and focus on staying alive instead of dying. The facilitators were related to trust in and competence of their physician and earlier experiences with death in their (social) environment. For most barriers and facilitators, agreement between patients and family caregivers was fair to moderate., Conclusion: Differences in barriers and facilitators between patients and family caregivers ask for an individual approach to facilitate end-of-life communication.

Dyspnea is one of the most reported symptoms of patients with advanced Chronic Obstructive Pulmonary Disease (COPD) and is often undertreated. Morphine has proven to be an effective treatment for dyspnea and is recommended in clinical practice guidelines, but questions concerning benefits and respiratory adverse effects remain. This study primarily evaluates the impact of oral sustained release morphine (morphine SR) on health-related quality of life and respiratory adverse effects in patients with COPD. Secondary objectives include the impact on exercise capacity, the relationship between description and severity of dyspnea and the presence of a clinically relevant response to morphine, and cost-effectiveness. A single-center, randomized, double blind, placebo controlled intervention study will be performed in 124 patients with COPD who recently completed a comprehensive pulmonary rehabilitation program. Participants will receive 20-30 mg/24h morphine SR or placebo for four weeks. After the intervention, participants will be followed for twelve weeks. Outcomes include: the COPD Assessment Test, six minute walking test, Multidimensional Dyspnea Scale and a cost diary. Furthermore, lung function and arterial blood gasses will be measured. These measures will be assessed during a baseline and outcome assessment, two home visits, two phone calls, and three follow-up assessments. The intervention and control group will be compared using uni- and multivariate regression analysis and logistic regression analysis. Finally, an economic evaluation will be performed from a societal and healthcare perspective. The current manuscript describes the rationale and methods of this study and provides an outline of the possible strengths, weaknesses and clinical consequences., (Copyright © 2016 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.)

Context: Patient-clinician communication is an important prerequisite to delivering high-quality end-of-life care. However, discussions about end-of-life care are uncommon in patients with advanced chronic organ failure., Objectives: The aim was to examine the quality of end-of-life care communication during one year follow-up of patients with advanced chronic organ failure. In addition, we aimed to explore whether and to what extent quality of communication about end-of-life care changes toward the end of life and whether end-of-life care communication is related to patient-perceived quality of medical care., Methods: Clinically stable outpatients (n = 265) with advanced chronic obstructive pulmonary disease, chronic heart failure, or chronic renal failure were visited at home at baseline and four, eight, and 12 months after baseline to assess quality of end-of-life care communication (Quality of Communication questionnaire). Two years after baseline, survival status was assessed, and if patients died during the study period, a bereavement interview was done with the closest relative., Results: One year follow-up was completed by 77.7% of the patients. Quality of end-of-life care communication was rated low at baseline and did not change over one year. Quality of end-of-life care communication was comparable for patients who completed two year follow-up and patients who died during the study. The correlation between quality of end-of-life care communication and satisfaction with medical treatment was weak., Conclusion: End-of-life care communication is poor in patients with chronic organ failure and does not change toward the end of life. Future studies should develop an intervention aiming at initiating high-quality end-of-life care communication between patients with advanced chronic organ failure and their clinicians., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

We aimed to identify baseline and longitudinal determinants of change in disease-specific health status in patients with advanced chronic obstructive pulmonary disease (COPD). Demographic and clinical characteristics as well as disease-specific health status (St George's Respiratory Questionnaire, SGRQ) were assessed in 105 outpatients with advanced COPD at baseline and at 4, 8 and 12 months. Eighty-five patients (81.0%) had complete SGRQ data at baseline and 12 months and were included in analyses. Stepwise multiple regression analysis revealed that lower SGRQ total score, higher depression scores and longer time needed to complete the Timed Up and Go (TUG) test at baseline, as well as increase in time needed to complete the TUG test and increase in dyspnoea during the 1-year follow-up period, were predictors of deterioration in disease-specific health status. The current study reinforces the stimulation of physical mobility and the targeting of dyspnoea as components for treatment programs to optimize disease-specific health status in patients with advanced COPD., (© 2014 Wiley Publishing Asia Pty Ltd.)

Objectives: Care dependency is a determinant of quality of life and survival among patients with advanced chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), or chronic renal failure (CRF). The objectives of this study were to explore the profiles of care dependency in patients with advanced COPD, CHF, or CRF; to study the changes in care dependency during 1-year follow-up; and to study whether 1-year changes in care dependency are comparable between patients with advanced COPD, CHF, or CRF., Design: Longitudinal observational study., Participants: Clinically stable patients with advanced COPD (n = 105), CHF (n = 80), or CRF (n = 80) were recruited at outpatient clinics of 7 Dutch hospitals., Measurements: Patients were visited at home at baseline, and at 4, 8, and 12 months to assess demographic and clinical characteristics, comorbidities (Charlson comorbidity index), care dependency (Care Dependency Scale), mobility, health status, and symptom burden., Results: COPD and CHF patients reported a higher baseline level of care dependency than patients with CRF. Care dependency differed between patients with COPD, CHF, or CRF in the items 'getting (un)dressed,' 'hygiene,' 'contact with others,' and 'sense of rules/values.' One-year follow-up was completed by 206 patients (77.7%). Patients with COPD were more likely to experience an increase in care dependency. An increase in care dependency was associated with higher age, higher number of hospital admissions, decrease in health status, and worsening of Charlson comorbidity index score., Conclusions: Care dependency profiles differ between patients with COPD, CHF, or CRF. Patients with advanced COPD are at risk for a 1-year increase in care dependency. Regular assessment of care dependency and addressing care dependency in palliative care programs for patients with advanced COPD, CHF, or CRF are needed., (Copyright © 2014 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.)

Context: To die at the preferred site is a key principle of a good death., Objectives: To examine one-year stability of preferences for site of death among patients with advanced chronic organ failure, and to assess agreement between the actual site of death and the site patients indicated in advance as their preferred site., Methods: Clinically stable outpatients (n=265) with advanced chronic obstructive pulmonary disease, chronic heart failure, or chronic renal failure were visited at home at baseline and four, eight, and 12 months after baseline to assess their preferred site of death. One-year follow-up was completed by 77.7% of the patients. A bereavement interview was done with the closest relative of patients who died within two years after baseline (n=66, 24.9%) to assess their actual site of death., Results: During one-year follow-up, 61.2% of the patients changed their preference for site of death. During the home interview before their death, 51.5% reported to prefer to die at home. A considerable portion of the patients (57.6%) died in the hospital, and 39.4% of the patients died at the site they reported previously as their preferred site (κ=0.07, P=0.42)., Conclusion: Preferences for site of death may change in patients with advanced chronic organ failure. Future studies should explore whether and to what extent discussing the possibilities for the site of end-of-life care as a part of advance care planning can prepare patients and relatives for in-the-moment decision making and improve end-of-life care., Trial Registration: NTR 1552 Dutch Trial Register., (Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Objective: To investigate the within-day test-retest reliability of the Timed Up & Go (TUG) test in patients with advanced chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), and chronic renal failure (CRF)., Design: Cross-sectional., Setting: Patients' home environment., Participants: Subjects (N=235, 64% men; median age, 70y [interquartile range, 61-77y]; median body mass index, 25.6kg/m(2) [interquartile range, 22.8-29.4kg/m(2)]) with advanced COPD (n=95), CHF (n=68), or CRF (n=72)., Interventions: Not applicable., Main Outcome Measure: Time to complete the TUG test. Three trials were performed on the same day and by the same assessors. The intraclass correlation coefficient (ICC), kappa coefficient, standard error of measurement, and absolute and relative minimal detectable change (MDC) values were calculated., Results: Good agreement was observed, in general, for both the total sample and subgroups (COPD, CHF, CRF), with ICC values ranging from .85 to .98, and kappa coefficients from .49 to 1.00. However, statistical improvement occurred in the total sample from the first to the second trial with large limits of agreement (mean difference, -.97s; 95% confidence interval, 3.00 to -4.94s; P<.01). The third trial added little or no information to the first 2 trials. For the total sample, a standard error of measurement value of approximately 1.6 seconds, an absolute value of MDC at the 95% confidence level (MDC95%) of approximately 4.5 seconds, and a relative value of MDC at the 95% confidence level (MDC95%%) of approximately 35% were found between the first 2 trials, with similar values found for the subgroups., Conclusions: The TUG test is reliable in patients with advanced COPD, CHF, or CRF after 2 trials. Values of standard error of measurement and MDC may be used in daily clinical practice with these populations to define what is expected and what represents true change in repeated measures., (Copyright © 2013 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: Previous studies suggest that care dependency may predict survival in hospitalized patients, but the prognostic value of care dependency in clinically stable outpatients with advanced chronic organ failure remains unknown. The objective of this study was to assess whether and to what extent care dependency predicts 2-year survival in patients with advanced chronic organ failure., Design: Longitudinal observational study., Setting: Patients were recruited at the outpatient clinic of one academic and six general hospitals in The Netherlands., Participants: A total of 265 clinically stable outpatients with advanced chronic obstructive pulmonary disease (n = 105), chronic heart failure (n = 80), and chronic renal failure (n = 80) were included at baseline., Measurements: Care dependency was assessed using the Care Dependency Scale (CDS), a 15-item self-administered questionnaire. In addition, patients performed a Timed Up and Go test to assess mobility. Finally, demographics, clinical characteristics, and 2-year survival were recorded., Results: At baseline, 116 patients (43.8%) reported a CDS score ≤ 68 points and were considered as care dependent. In total, 66 patients (24.9%) died within 2 years. The Cox regression model showed that a higher CDS score (lower level of care dependency) was associated with a lower probability of dying within 2 years (hazard ratio, 0.95; 95% CI: 0.90-0.97), whereas older age was associated with a greater probability of dying within 2 years (hazard ratio, 1.06; 95% CI, 1.03-1.09)., Conclusion: The level of care dependency independently predicts 2-year survival among clinically stable outpatients with advanced chronic organ failure. Therefore, regular assessment of the level of care dependency should be included in clinical care for patients with advanced chronic organ failure., (Copyright © 2013. Published by Elsevier Inc.)

Background: Longitudinal studies analyzing the correlations between disease-specific and generic health status questionnaires at different time points in patients with advanced COPD are lacking. The aim of this study was to determine whether and to what extent a disease-specific health status questionnaire (Saint George's Respiratory Questionnaire, SGRQ) correlates with generic health status questionnaires (EuroQol-5-Dimensions, EQ-5D; Assessment of Quality of Life instrument, AQoL; Medical Outcomes Study 36-Item Short-Form Health Survey, SF-36) at four different time points in patients with advanced COPD; and to determine the correlation between the changes in these questionnaires during one-year follow-up., Methods: Demographic and clinical characteristics were assessed in 105 outpatients with advanced COPD at baseline. Disease-specific health status (SGRQ) and generic health status (EQ-5D, AQoL, SF-36) were assessed at baseline, four, eight, and 12 months. Correlations were determined between SGRQ and EQ-5D, AQoL, and SF-36 scores and changes in these scores. Agreement in direction of change was assessed., Results: Eighty-four patients (80%) completed one-year follow-up and were included for analysis. SGRQ total score and EQ-5D index score, AQoL total score and SF-36 Physical Component Summary measure (SF-36 PCS) score were moderately to strongly correlated. The correlation of the changes between the SGRQ total score and EQ-5D index score, AQoL total score, SF-36 PCS, and SF-36 Mental Component Summary measure (SF-36 MCS) score were weak or absent. The direction of changes in SGRQ total scores agreed slightly with the direction of changes in EQ-5D index score, AQoL total score, and SF-36 PCS score., Conclusions: At four, eight and 12 months after baseline, SGRQ total scores and EQ-5D index scores, AQoL total scores and SF-36 PCS scores were moderately to strongly correlated, while SGRQ total scores were weakly correlated with SF-36 MCS scores. The correlations between changes over time were weak or even absent. Disease-specific health status questionnaires and generic health status questionnaires should be used together to gain complete insight in health status and changes in health status over time in patients with advanced COPD.

Objectives: To assess caregiver burden as well as positive aspects of family caregiving in advanced chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), and chronic renal failure (CRF)., Design: Cross-sectional observational study., Setting: Patients recruited at the outpatient clinics of academic and general hospitals in the Netherlands., Participants: Patients with advanced COPD (n = 73), CHF (n = 45), and CRF (n = 41) and their family caregivers., Measurements: Caregiver burden and positive aspects of caregiving were assessed using the Family Appraisal of Caregiving Questionnaire for Palliative Care and were compared among family caregivers of patients with COPD, CHF, or CRF using linear regression analysis while controlling for characteristics of patients and family caregivers., Results: Most family caregivers were female partners of participating patients. Caregiver distress and caregiver strain scores were relatively low, whereas scores for positive caregiving appraisals and family well-being were relatively positive. Caregiver strain, positive caregiving appraisals, and family well-being were comparable for family caregivers of patients with COPD, CHF, or CRF. Caregiver distress was higher for family caregivers of patients with COPD than CHF. The experience of caregiving was influenced by being the patient's spouse, patient's psychological symptoms, and the presence of comorbidities., Conclusions: Family caregiving for patients with COPD, CHF, or CRF should not only be seen as a burden, but also as a positive experience. To support family caregivers, attention should be paid to caregiver burden and the positive aspects of family caregiving., (Copyright © 2012 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.)

Purpose: Aims of this cross-sectional study were to assess health status and care dependency in patients with advanced chronic obstructive pulmonary disease (COPD) or chronic heart failure (CHF) and to identify correlates of an impaired health status., Methods: The following outcomes were assessed in outpatients with advanced COPD (n = 105) or CHF (n = 80): clinical characteristics; general health status (EuroQol-5 Dimensions (EQ-5D); Assessment of Quality of Life instrument (AQoL); Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36)); disease-specific health status (St. Georges Respiratory Questionnaire (SGRQ), Minnesota Living with Heart Failure Questionnaire (MLHFQ)); physical mobility (timed 'Up and Go' test); and care dependency (Care Dependency Scale)., Results: Patients with advanced COPD or CHF have an impaired health status and may be confronted with care dependency. Multiple regression analyses have shown that physical and psychological symptoms, care dependency and number of drugs were correlated with impaired health status in advanced COPD or CHF, while demographic and clinical characteristics like age, gender, disease severity and co-morbidities were not correlated., Conclusions: Clinical care should regularly assess symptom burden and care dependency to identify patients with advanced COPD or CHF at risk for an impaired health status.

Improving patient-clinician communication about end-of-life care is important in order to enhance quality of care for patients with chronic obstructive pulmonary disease (COPD). Our objective was to compare quality of patient-clinician communication about end-of-life care, and endorsement of barriers and facilitators to this communication in the Netherlands and the USA. The present study was an analysis of survey data from 122 Dutch and 391 US outpatients with COPD. We compared quality of patient-clinician communication about end-of-life care (Quality of Communication questionnaire) and barriers and facilitators to communication about end-of-life care (Barriers and Facilitators Questionnaire) between the Netherlands and the USA, controlling for patients' demographic and illness characteristics. Although Dutch patients in this study had worse lung function and disease-specific health status than US patients, Dutch patients reported lower quality of communication about end-of-life care (median score 0.0 (interquartile range 0.0-2.0) versus 1.4 (0.0-3.6); adjusted p<0.005). Clinicians in both countries rarely discussed life-sustaining treatment preferences, prognoses, dying processes or spiritual issues. Quality of communication about end-of-life care needs to improve in the Netherlands and the USA. Future studies to improve this communication should be designed to take into account international differences and patient-specific barriers and facilitators to communication about end-of-life care.

Background: Patients with advanced chronic obstructive pulmonary disease (COPD) or chronic heart failure (CHF) may experience significant symptom distress. For development of palliative care programs that adequately address symptoms of patients with COPD or CHF, it is necessary to know severity of symptom distress and to gain insight in comorbidities and current provision of health care. Objective of the present cross-sectional observational study was to assess severity of symptoms, presence of comorbidities, and current provision of health care in outpatients with advanced COPD or CHF., Methods: A total of 105 outpatients with clinically stable but advanced COPD (Global initiative for chronic Obstructive Lung Disease [GOLD] stage III or IV) and 80 patients with advanced CHF (New York Heart Association [NYHA] class III or IV) were assessed for demographics, clinical characteristics, self-reported comorbidities, and severity of symptoms using visual analogue scales. In addition, current health care and symptom-related interventions have been assessed., Results: Comorbidities were reported by 96.3% of the CHF patients and 61.9% of the COPD patients. Patients suffered from multiple symptoms, like dyspnea, fatigue, muscle weakness, coughing, low mood, sleeplessness, and frequent micturition. For most symptoms, only the minority of patients had received symptom-related treatment. Involvement of allied health care professionals was low. The majority of COPD and CHF patients had received home adaptation and medical aids., Conclusions: Patients with advanced COPD or CHF experience comorbidities and suffer from multiple symptoms, which are often under treated. Further development and implementation of palliative care programs, consisting of regular assessment of the patients' comorbidities and symptoms as well as the provision of patient-tailored interventions is needed.

Chronic obstructive pulmonary disease (COPD) patients may suffer from symptoms of anxiety and depression. Whether and to what extent symptoms of anxiety and depression may be present in COPD patients entering pulmonary rehabilitation and which patient characteristics are associated with psychological distress remains currently unknown. The objective of the present study is to determine the prevalence and the determinants of clinically relevant symptoms of anxiety and depression in COPD patients entering pulmonary rehabilitation. Symptoms of anxiety and depression have been assessed in 701 COPD patients entering pulmonary rehabilitation using the Hospital Anxiety and Depression Scale. Additionally, disease-specific health status, pulmonary function, body composition, exercise capacity, co-existing morbidities, smoking status, symptoms, long-term oxygen therapy and the use of antidepressant and anxiolytic drugs have been recorded. Patients had mean anxiety scores of 7.6 points and mean depression scores of 7.2 points. Anxiety scores >or=10 points were present in 225 patients (32%) and depression scores >or=10 points were present in 192 patients (27%). Patients at risk of having symptoms of anxiety were female or used antidepressant or anxiolytic drugs. Patients at risk of having symptoms of depression experienced dyspnea, had a body mass index (BMI) <21 kg/m(2) or used antidepressant or anxiolytic drugs. A considerable proportion of the COPD patients entering pulmonary rehabilitation report symptoms of anxiety and/or depression, which may significantly impair disease-specific health status. Patients at risk of having symptoms of anxiety and/or depression are female, experience dyspnea, have a low BMI or use antidepressant and/or anxiolytic drugs.

Palliative care should be part of integrated care for patients with end-stage respiratory diseases. An intensive inpatient interdisciplinary palliative care programme has been developed for patients with end-stage respiratory diseases in the Netherlands. This programme consists of the management of daily symptoms and care needs to support patients and their families, and maintain or improve quality of life of these patients and their loved ones. This article presents case studies which describe the clinical course and management of three patients admitted to the programme: a 77-year-old woman who died from chronic obstructive pulmonary disease (COPD); a 60-year-old woman with end-stage COPD who improved her daily functioning and was discharged home after 3 months; and a 74-year-old woman who died of pulmonary fibrosis. This article describes the characteristics of the programme and shows the possible benefits of an intensive patient-centred interdisciplinary palliative care programme for patients with end-stage respiratory diseases. Palliative care programmes can be the final step in the chain of care for patients with respiratory diseases. Further research is necessary to study whether, and to what extent, a patient-centred interdisciplinary palliative care programme for end-stage respiratory diseases may improve health status, daily symptom burden, patient satisfaction and quality of dying.

Chronic diseases are nowadays the major cause of morbidity and mortality worldwide. Patients with end-stage chronic organ failure may suffer daily from distressful physical and psychological symptoms. The objective of the present study is to systematically review studies that examined daily symptom prevalence in patients with end-stage chronic organ failure, with attention to those that included patients with either congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD) or chronic renal failure (CRF). Thirty-nine articles (8 CHF, 7 COPD, 2 CHF and COPD, 22 CRF) have been included. The included studies used various study designs. There was a wide range of daily symptom prevalence that may be due to the heterogeneity in methodology used. Nevertheless, findings suggest significant symptom burden in these patients. This review highlights the need for further prospective and longitudinal research on symptom prevalence in patients with end-stage CHF, COPD and CRF to facilitate the development of patient-centred palliative care programs.