Daisy J.A. Janssen

Symptoms of anxiety and depression in COPD patients entering pulmonary rehabilitation

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 ≥10 points were present in 225 patients (32%) and depression scores ≥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/m2 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.

Advance care planning for patients with COPD: Past, present and future

OBJECTIVE To discuss the importance, current status and directions for improvement of advance care planning and communication about end-of-life care for patients with Chronic Obstructive Pulmonary Disease (COPD). METHODS Narrative review of the currently available literature regarding advance care planning and communication about end-of-life care in COPD. RESULTS Advance care planning, including patient-clinician communication about end-of-life care, can improve outcomes for patients and their families and may be particularly important for patients with COPD. Patient-clinician communication is needed to inform and prepare patients about their diagnosis, treatment, prognosis, and what dying might be like. It is necessary to help patients and their clinicians understand patient preferences for life-sustaining treatments. Despite these advantages, advance care planning and conversations about end-of-life care in current practice are limited and their quality is often poor. CONCLUSION Advance care planning can improve outcomes for patients and their relatives. Recent studies provide directions for how to facilitate advance care planning for patients with COPD. PRACTICE IMPLICATIONS Advance care planning ought to be part of care for patients with advanced COPD. Future studies should focus on interventions to facilitate advance care planning in patients with COPD with the goal of improving the quality of end-of-life care.

Patient–clinician communication about end-of-life care for Dutch and US patients with COPD

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.

Differential response to pulmonary rehabilitation in COPD: multidimensional profiling

The aim of the present study was to profile a multidimensional response to pulmonary rehabilitation in patients with chronic obstructive pulmonary disease (COPD). Dyspnoea, exercise performance, health status, mood status and problematic activities of daily life were assessed before and after a 40-session pulmonary rehabilitation programme in 2068 patients with COPD (mean forced expiratory volume in 1 s of 49% predicted). Patients were ordered by their overall similarity concerning their multidimensional response profile, which comprises the overall response on MRC dyspnoea grade, 6MWD, cycle endurance time, Canadian Occupational Performance Measure performance and satisfaction scores, Hospital Anxiety and Depression Scale anxiety and depression, and St Georges Respiratory Questionnaire total score, using a novel non-parametric regression technique. Patients were clustered into four groups with distinct multidimensional response profiles: n=378 (18.3%; “very good responder”), n=742 (35.9%; “good responder”), n=731 (35.4%; “moderate responder”), and n=217 (10.5%; “poor responder”). Patients in the “very good responder” cluster had higher symptoms of dyspnoea, number of hospitalisations <12 months, worse exercise performance, worse performance and satisfaction scores for problematic activities of daily life, more symptoms of anxiety and depression, worse health status, and a higher proportion of patients following an inpatient PR programme compared to the other three clusters. A multidimensional response outcome needs to be considered to study the efficacy of pulmonary rehabilitation services in patients with COPD, as responses to regular outcomes are differential within patients with COPD. Efficacy of pulmonary rehabilitation in patients with COPD needs to be assessed using a multidimensional response http://ow.ly/RsfYK

Rehabilitation and palliative care in lung fibrosis

The idiopathic interstitial pneumonias are a heterogeneous group of diffuse parenchymal lung diseases with varying degrees of inflammation and fibrosis, like interstitial pulmonary fibrosis. Functional exercise tolerance and quality of life have been shown to be significantly affected in patients with lung fibrosis. Moreover, interstitial pulmonary fibrosis is a progressive disease with poor prognosis and limited response to conventional pharmacological treatment like immunosuppressive agents. So, in patients with lung fibrosis there seems a clear indication to refer them for comprehensive pulmonary rehabilitation programmes and to initiate palliative care in an early phase of the disease. In the current review we will present a rationale for pulmonary rehabilitation in patients with lung fibrosis and the effects of this type of non‐pharmacological intervention on exercise capacity and quality of life. In addition, we will discuss possibilities for palliative care in these patients.

Advance care planningAdvance care planning for patients with COPD: Past, present and future

OBJECTIVE To discuss the importance, current status and directions for improvement of advance care planning and communication about end-of-life care for patients with Chronic Obstructive Pulmonary Disease (COPD). METHODS Narrative review of the currently available literature regarding advance care planning and communication about end-of-life care in COPD. RESULTS Advance care planning, including patient-clinician communication about end-of-life care, can improve outcomes for patients and their families and may be particularly important for patients with COPD. Patient-clinician communication is needed to inform and prepare patients about their diagnosis, treatment, prognosis, and what dying might be like. It is necessary to help patients and their clinicians understand patient preferences for life-sustaining treatments. Despite these advantages, advance care planning and conversations about end-of-life care in current practice are limited and their quality is often poor. CONCLUSION Advance care planning can improve outcomes for patients and their relatives. Recent studies provide directions for how to facilitate advance care planning for patients with COPD. PRACTICE IMPLICATIONS Advance care planning ought to be part of care for patients with advanced COPD. Future studies should focus on interventions to facilitate advance care planning in patients with COPD with the goal of improving the quality of end-of-life care.

Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care

Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. We used a formal Delphi consensus process to help develop a definition of ACP and provide recommendations for its application. Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68-100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individuals health condition worsens; and, using trained non-physician facilitators to support the ACP process. We present a list of outcome measures to enable the pooling and comparison of results of ACP studies. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research.

Self-perceived symptoms and care needs of patients with severe to very severe chronic obstructive pulmonary disease, congestive heart failure or chronic renal failure and its consequences for their closest relatives: the research protocol

BackgroundRecent research shows that the prevalence of patients with very severe chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF) and chronic renal failure (CRF) continues to rise over the next years. Scientific studies concerning self-perceived symptoms and care needs in patients with severe to very severe COPD, CHF and CRF are scarce.Consequently, it will be difficult to develop an optimal patient-centred palliative care program for patients with end-stage COPD, CHF or CRF. The present study has been designed to assess the symptoms, care needs, end-of-life care treatment preferences and communication needs of patients with severe to very severe COPD, CHF or CRF. Additionally, family distress and care giving burden of relatives of these patients will be assessed.Methods/designA cross-sectional comparative and prospective longitudinal study in patients with end-stage COPD, CHF or CRF has been designed. Patients will be recruited by their treating physician specialist. Patients and their closest relatives will be visited at baseline and every 4 months after baseline for a period of 12 months. The following outcomes will be assessed during home visits: self-perceived symptoms and care needs; daily physical functioning; general health status; end-of-life care treatment preferences; end-of-life care communication and care-giver burden of family caregivers. Additionally, end-of-life care communication and prognosis of survival will be assessed with the physician primarily responsible for the management of the chronic organ failure. Finally, if patients decease during the study period, the baseline preferences with regard to life-sustaining treatments will be compared with the real end-of-life care.DiscussionTo date, the symptoms, care needs, caregiver burden, end-of-life care treatment preferences and communication needs of patients with very severe COPD, CHF or CRF remain unknown. The present study will increase the knowledge about the self-perceived symptoms, care-needs, caregiver burden, end-of-life care treatment preferences and communication needs from the views of patients, their loved ones and their treating physician. This knowledge is necessary to optimize palliative care for patients with COPD, CHF or CRF. Here, the design of the present study has been described. A preliminary analysis of the possible strengths, weaknesses and clinical consequences is outlined.

Definition of a COPD self-management intervention: International Expert Group consensus

There is an urgent need for consensus on what defines a chronic obstructive pulmonary disease (COPD) self-management intervention. We aimed to obtain consensus regarding the conceptual definition of a COPD self-management intervention by engaging an international panel of COPD self-management experts using Delphi technique features and an additional group meeting. In each consensus round the experts were asked to provide feedback on the proposed definition and to score their level of agreement (1=totally disagree; 5=totally agree). The information provided was used to modify the definition for the next consensus round. Thematic analysis was used for free text responses and descriptive statistics were used for agreement scores. In total, 28 experts participated. The consensus round response rate varied randomly over the five rounds (ranging from 48% (n=13) to 85% (n=23)), and mean definition agreement scores increased from 3.8 (round 1) to 4.8 (round 5) with an increasing percentage of experts allocating the highest score of 5 (round 1: 14% (n=3); round 5: 83% (n=19)). In this study we reached consensus regarding a conceptual definition of what should be a COPD self-management intervention, clarifying the requisites for such an intervention. Operationalisation of this conceptual definition in the near future will be an essential next step. Consensus of a conceptual definition of what should be a COPD self-management intervention with its requisites http://ow.ly/Zfr0F

Educational programmes in COPD management interventions: a systematic review.

BACKGROUND According to practice guidelines, educational programmes for patients with COPD should address several educational topics. Which topics are incorporated in the existing programmes remains unclear. OBJECTIVES To delineate educational topics integrated in current COPD management interventions; and to examine strengths, weaknesses, and methods of delivery of the educational programmes. DATA SOURCES A systematic literature search was performed using MEDLINE/PubMed, Cochrane Central Registry of Controlled Clinical Trials, and Web of Science. The authors of included studies were contacted for additional information. STUDY SELECTION Studies that contained educational programmes incorporated in COPD management interventions were included. DATA EXTRACTION Data were extracted using a pre-designed data form. The Reach, Efficacy, Adoption, Implementation and Maintenance (RE-AIM) framework was used for evaluating the strengths and weaknesses of the programmes. DATA SYNTHESIS In total, 81 articles, describing 67 interventions were included. The majority (53.8%) of the studies incorporated 10 or more educational topics. The following topics were frequently addressed: smoking cessation (80.0%); medication (76.9%); exercise (72.3%); breathing strategies (70.8%); exacerbations (69.2%); and stress management (67.7%). Printed material and/or brochure (90.5%) and demonstrations and practice (73.8%), were the predominant tool and method, respectively. Nurses (75.8%), physicians (37.9%) and physiotherapists (34.8%) were the most involved healthcare professionals. CONCLUSIONS Heterogeneity and wide variation in the content and the method of delivery of educational interventions were present. Alignment between educational topics incorporated in the existing programmes and those recommended by the COPD guidelines, involvement of various professionals and combined use of methods should be emphasised.