In a Strained Healthcare System, Patients with Advanced COPD Struggle to Access the Needed Support from the Healthcare Professionals - A Qualitative Study.

This study aimed to explore the self-management strategies of Danish patients living with advanced Chronic Obstructive Pulmonary Disease (COPD), with a particular focus on their daily life and their interactions with the respiratory outpatient clinic. Data were collected through semi-structured interviews with 11 patients with COPD affiliated with a Danish respiratory outpatient clinic. The data were thematically analyzed as suggested by Braun & Clarke. The analysis revealed one overarching theme, three main themes, and six subthemes. The overarching theme 'In a strained healthcare system patients with COPD struggle to access needed support to be able to self-manage their disease' revolved around the challenges that patients face in an overburdened healthcare system as they seek support to effectively self-manage their condition. The three main themes were: (1) Only physical symptoms provide legal access to the respiratory outpatient clinic, (2) For patients, the measurements serve as indicators of their health status and overall well-being, (3) Healthcare professionals' skills and not the mode of contact matters to the patients. Healthcare professionals should be aware that the rhetoric surrounding a busy healthcare system with a stressed-out staff also affects patients. Patients with COPD may be particularly sensitive to this message and try to avoid burdening the healthcare system further by setting aside their own needs. However, this approach can lead to neglecting symptoms of deterioration and mental symptoms, which increase the risk of disease progression and subsequent risk of hospital admission.

Characteristics and health related quality of life in a population with advanced chronic obstructive pulmonary disease, a cross-sectional study.

BACKGROUND: It is important to understand the total burden of COPD and thereby be able to identify patients who need more intensive palliative care to avoid deteriorated quality of life. The aim of this study was to describe the psychosocial and demographic characteristics of a population with advanced COPD in a stable phase of the disease. METHODS: This study was cross-sectional based on a prospective observational cohort. The following questionnaires were administered: Chronic Respiratory Disease Questionnaire (CRQ), The COPD Assessment Test (CAT), The Hospital and Anxiety and Depression Scale (HADS), The Medical Research Council dyspnoea scale (MRC), and self-rate general health. RESULTS: We included 242 patients with advanced COPD from a Danish pulmonary outpatient clinic. Their mean FEV1 was 38% (±12.7) and 19% were treated with long term oxygen. The mean CRQ domain score was CRQ-dyspnea 4.21 (±1.4), CRQ-Mastery 4.88 (±1.3), CRQ-Emotional 4.81 (±1.2), CRQ-Fatigue 3.93 (±1.3). The mean CAT-score was 18.4 (± 6.7), and 44% had a CAT score > 20. The mean score on the subscale for anxiety (HADS-A) and depression (HADS-D) was 5.07 (±3.9) and 5.77 (±3.9), respectively. Thirty percent self-rated their health as bad or very bad and 19.8% were current smokers. CONCLUSIONS: This study describes the characteristics of a population with advanced COPD in a stable phase of their disease. Our results illustrate how the population although treated in an outpatient structure already focusing on palliative needs, still live with unmet palliative needs and impaired quality of life.

Assigned nurses and a professional relationship: a qualitative study of COPD patients' perspective on a new palliative outpatient structure named CAPTAIN.

BACKGROUND: Little is known of how to organize non-malign palliative care, and existing knowledge show that patients with COPD live with unmet palliative needs and low quality of life. With the intent to improve palliative care for patients with COPD, we changed the structure of our outpatient clinic from routine visits by a pulmonary specialist to a structure where each patient was assigned a nurse, offered annual advance care planning dialogues, and ad hoc pulmonary specialist visits. The aim of this study was to explore COPD patients' experiences with a new and altered palliative organization. METHODS: The design was interpretive description as described by Thorne. We conducted ten semi-structured interviews with patients with severe COPD from January 2017 to December 2017. RESULTS: Patients described how the professional relationship and the availability of their nurse was considered as the most important and positive change. It made the patients feel safe, in control, and subsequently influenced their ability to self-manage their life and prevent being hospitalized. The patients did not emphasize the advanced care planning dialogues as something special or troublesome. CONCLUSION: We showed that it is relevant and meaningful to establish a structure that supports professional relationships between patient, nurse and physician based on patients needs. The new way of structuring the outpatient care was highly appreciated by COPD patients and made them feel safe which brought confidence in self-management abilities.

Home-based COPD psychoeducation: A qualitative study of the patients' experiences.

OBJECTIVE: To explore the patients' experiences of a minimal home-based psychoeducative intervention aimed at reducing symptoms of anxiety. BACKGROUND: In a randomised controlled trial (RCT) we have shown that a minimal home-based and nurse-led psychoeducative intervention has a significant effect in reducing symptoms of anxiety and increasing mastery of dyspnoea in patients with advanced chronic obstructive pulmonary disease (COPD). However, we do not know if the intervention is perceived as meaningful and applicable in the everyday life of patients with advanced COPD. METHODS: We conducted a nested post-trial qualitative study. The study methodology was Interpretive Description as described by Thorne. The study was based on semi-structured interviews with twenty patients from the RCT intervention group i.g. home-living people with a diagnosis of advanced COPD and symptoms of anxiety. RESULTS: The patients described that making anxiety visible makes it manageable and provides relief. The patients described a feeling of being alone with managing anxiety and dyspnea, and the only way to gain in control of their cognitions was to mobilise internal resources. The intervention was appreciated by patients because it strengthened their internal resources. Further, it was perceived as a relief that the intervention insisted on talking about anxiety and thereby invited patients to verbalise worries related to end-of-life. CONCLUSION: This study offers knowledge to better understand the patients' experiences of a psychoeducative intervention. The intervention was perceived as comprehensible and applicable in the patients' everyday life and contributed to the patients' ability to self-manage their condition.

Efficacy of a minimal home-based psychoeducative intervention in patients with advanced COPD: A randomised controlled trial.

BACKGROUND: Anxiety is a common comorbidity in patients with advanced Chronic Obstructive Pulmonary Disease (COPD) with major impact on quality of life and associated with increased risk of death. The objective of this randomised controlled trial was to test the efficacy of a minimal home-based psychoeducative intervention versus usual care for reducing symptoms of anxiety in patients with advanced COPD. METHODS: The trial included 66 participants with advanced COPD and symptoms of anxiety. The primary outcome was anxiety assessed by the Hospital Anxiety and Depression scale (HADS) subscale for anxiety (HADS-A). The secondary outcome was mastery assessed by the Chronic Respiratory Questionnaire (CRQ) domain of mastery (CRQ-M). Assessments were performed at baseline and one and three months post-intervention. RESULTS: The intervention group had a lower post intervention HADS-A score on average, compared with the control group (p = 0.005), indicating a significant effect of the intervention. The average difference between the groups in HADS-A was 2.16 points (CI = [0.62; 3.71]) at one month and 2.32 points (CI = [0.74; 3.89]) at three months follow-up. The intervention group had a higher post intervention CRQ-M score on average compared with the control group (p = 0.016). The average differences between the groups were 0.58 points (CI = [0.09; 1.06]) after one month and 0.67 points (CI = [0.18; 1.17]) after three months. CONCLUSIONS: The psychoeducative intervention provided sustainable symptom relief and improved the patients' self-management abilities.