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.
Keywords: COPD; HRQoL; Non-malign palliative care; Patient-reported outcome; Psychosocial characteristics; Quality of life
The World Health Organization (WHO) estimates that 65 million people have moderate to severe chronic obstructive pulmonary disease (COPD) (
In the past years we have developed and implemented a new Danish pulmonary outpatient structure named CAPTAIN with the aim of improving the basic palliative care offered to patients with advanced COPD [[
Until now, the majority of studies investigating symptom burden and HRQoL in patients with COPD include mainly patients with COPD in a mild or moderate state and treated in traditional organizations with semi-annual or annual medical checks [[
There is a need for knowledge about the symptom burden and HRQoL in patients with advanced COPD, living at home and treated in an outpatient structure that already focuses on the patients' individual basic palliative needs. HRQoL is arguable the most relevant outcome from a patient's perspective and associated with both COPD mortality and morbidity [[
This study was cross-sectional based on a prospective cohort of patients with advanced COPD affiliated a pulmonary outpatient clinic at Nordsjællands Hospital, Denmark. In Denmark, only patients with advanced COPD are seen in a pulmonary outpatient clinic, otherwise they are cared for by their general practitioner. Advanced COPD was defined as a FEV
All patients affiliated or referred to the pulmonary outpatient clinic with the diagnosis COPD (ICD-10) could be included (n = 650). Exclusion criteria was inability to understand Danish or unwillingness to give informed consent.
Ten patients did not meet the inclusion criteria, 28 patients rejected to participate due to lack of resources, poor vision or fatigue and 50 patients verbally agreed to participate but were never included as they did not fulfill or return the informed consent. Three hundred twenty patients were not invited to participate by their nurse. The nurses' reason for this was either bustle and lack of time among the nurses, or because the nurses interpreted that the patients were in a too bad condition to participate or in acute phase of the disease.
A total of 242 patients with advanced COPD were enrolled in the period June 2017 to December 2018.
The first and second author reviewed the patients' medicinal records for demographic and clinical data (Table 1). Weight, FEV
Type of variables
Characteristics Type of quantity Age, height, weight Continuous Gender, ethnicity, marital, educational and occupational status, living arrangements Categorical Use of social services, smoking, alcohol, E-cigarettes Binary (Y/N) FEV1 of predicted value, oxygen saturation, numbers of exacerbation within 12 months, BMI Continuous Oxygen treatment, treated with NIV within 12 months, Binary (Y/N) SSRI, TCA, azapirones Binary (Y/N) Benzodiazepines Binary (Y/N) Opioids on the indication dyspnoea Binary (Y/N) Permanent corticosteroid treatment Binary (Y/N) Weak analgesics and nonsteroidal anti-inflammatory agents Binary (Y/N) LAMA, LABA, ICS or combinations Binary (Y/N) Cannabis oil Binary (Y/N) Pulmonary rehabilitation during the past 12 months Binary (Y/N) Practical assistance, personal care, home nursing care Binary (Y/N) Public appropriation for terminal care Binary (Y/N) Death Binary (Y/n) Place of death Categorical CRQ, CAT, HADS, MRC Continuous Self-rated health Categorical
FEV1 forced expiratory volume in 1 s; BMI body mass index; NIV non-invasive ventilation; SSRI selective serotonin reuptake inhibitors; TCA tricyclic antidepressants; MRC Medical Research Council dyspnoea scale; CAT The COPD Assessment Test (CAT); CRQ Chronic Respiratory Disease Questionnaire; HADS Hospital and Anxiety and Depression Scale; Y/N yes/no.
Patients completed self-reported or interview administrated questionnaires. All included patients were asked to fill out the following questionnaires: Chronic Respiratory Disease Questionnaire (CRQ), The COPD Assessment Test (CAT), The Hospital and Anxiety and Depression Scale (HASDS), The Medical Research Council dyspnoea scale (MRC), and in addition self-rate their general health. Licenses were obtained on all questionnaires before the start of the study and the standardised questionnaires were scored according to the guidelines from the instrument developers.
All data were entered into a RedCap database by DGB and ML and two independent student workers. Finally, the two student workers controlled 20% of all entered data and found minor data entry errors in three cases.
The CRQ measure HRQoL in patients with respiratory diseases. We used the self-administrated standardized CRQ (CRQ-SAS) which consist of 20 items across four dimensions; Dyspnea (5 items), fatigue (4 items), emotions (7 items) and mastery (4 items). Patients answer each question on a seven points Likert-type scale to express the degree of disability from 1 (maximum impairment) to 7 (no impairment). The mean score of each domain is calculated and presented for interpretation (range 1–7). It is not recommended to present a summary score of the 20 items [[
The CAT is a self-administered questionnaire that measures health status in patients with COPD. The CAT consists of 8 items (cough, phlegm tightness, breathlessness, limited activities, confidence leaving home, sleeplessness and energy) each assessing the impact on COPD on daily life and rated on a semantic differential scale from 0 to 5. The total CAT score ranges between 0 (low impact) to 40 (high impact) [[
The HADS is a self-completed questionnaire that measure symptoms of anxiety and depression in patients in non-psychiatric settings [[
The MRC is a patient-rated single item scale where severity of dyspnea is rated by the patient from 1 to 5. 'I only get breathless with strenuous exertion' is grade 1 and 'I am too breathless to leave the house' is grade 5. An MRC ≥ 3 is a threshold for separating less breathlessness from more breathlessness [[
All variables were analysed in a descriptive manner (Table 1). Parametric data were analyzed using means, standard deviations (SD) and ranges, and nonparametric data with medians and interquartile ranges (IQR). Comparison between means was conducted with t-tests. The association between mortality (outcome) and the four instruments (CRQ, HADS, CAT, and MRC) (exposures) was tested using a multivariable logistic regression analysis with gender and age adjustment. Statically significant results were defined as those with p < 0.05. Statistical analysis was performed using SPSS v.22 (IBM Corp., Armonk, NY, USA).
There are two main types of missing data; missing forms or missing items. In missing forms, the whole questionnaire is missing, while missing items refer to one or several items in the questionnaire is not completed. In this study, all questionnaires not 100% completed are excluded from the analysis, which is why the numbers (n) varies in Tables 1 and 3.
Demographic and clinical baseline characteristics of the included patients (n = 242) are presented in Table 2. The patients were aged 39–91 years with a mean of 72 years (8.4) and 58% were females. Except for one patient, all had an ethnicity of Danish origin. One fifth of the patients were current smokers and more than 13% consumed more alcohol than recommended by the Danish National Board of Health.
Demographic and clinical characteristics of the patients (n = 242)
Gender, females 140 (57.9) Age, year 72.01 ± 8.40 39–91 Ethnicity, Danish origin 241 (99.6) Body Mass Index (kg/m2) 25.11 ± 6.20 11–44 Current smoker 48 (19.8) Current E-cigarette user 7 (2.9) More than 7 units of alcohol per week for women and 14 units for men 33 (13.6) Living alone 102 (42.1) Nursing home resident 3 (1.2) No education 16 (6.6) Medium academic or trade 129 (53.3) Academic 21 (8.7) Retired due to health or age 215 (88.8) Employed 18 (7.4) The presence of a well-functioning and solid network, self-rated 225 (93.0) Help with personal care 36 (14.9) Help solving practical tasks 57 (23.6) Primary nurse care 30 (12.4) Long term oxygen therapy 46 (19.0) FEV1% of predicted value 38.04 ± 12.74 10–77 Saturation O2 94.54 ± 2.28 84–100 NIV 27 (11.8) No exacerbations 81 (34.2) 1 or 2 exacerbations 107 (45.14) More than 2 exacerbations 49 (20.74) 58 (24.0)
Results expressed are numbers (n), Percentages (%), means with standard deviations (SD) and ranges.
Patients demonstrated a mean FEV1 of 38% of predicted value (12.7), and 19% were treated in their home with long term oxygen. In addition, 12% of the patients had been treated with NIV in the previous 12 months and 66% (the sum of patients with 1 or 2 exacerbations and those with > 2 exacerbations) of the patients had one or more exacerbations within the last 12 months.
Selected pharmacological preparations extracted from the patient's record is presented in Table 3. Nearly 50 % of the patients were treated for pain (weak analgesics, NSAID or opioids). Thirteen patients (6%) were treated with opioids to relieve their dyspnea, whereas only one patient was treated with cannabis oil. Thirty-two patients (13%) were treated with antidepressant, ten (4%) with antipsychotics and six-teen (7%) with benzodiazepines.
Concomitant medication
Pharmacological variables ( n (%) Weak analgesics and nonsteroidal anti-inflammatory agents (NSAID) 82 (33.9) Opioids on indication pain 29 (12.0) Opioids on indication dyspnea 13 (5.4) Benzodiazepines 16 (6.6) Antidepressants 32 (13.2) Antipsychotics 10 (4.1) Cannabis oil 1 (0.4) Short acting bronchodilaters 219 (90.5) LAMAa 3 (1.2) LABAb 3 (1.2) ICSc 1 (0.4) LAMA + LABA 85 (35.1) ICS + LABA 8 (3.3) ICS + LAMA 2 (0.8) ICS + LABA + LAMA 138 (57.0)
More than 50 % of the patients were prescribed triple therapy (ICS/LABA/LAMA) and the rest a two-drug combination. Only seven patients received single drug treatment. Not surprisingly, more than 90 % were prescribed short acting bronchodilators.
Table 4 shows the patient reported psychosocial outcomes assessed by the standardised questionnaires. The CRQ assessed HRQoL based on four domains. Each domain was scored separately, and higher scores indicated better quality of life. On average did the patients have a CRQ-D score of 4.21 points, CRQ-M of 4.88 points, CRQ-E of 4.81 points and CRQ-F of 3.93 points. The patients had on average the lowest score on the fatigue domain indicating most HRQoL impairment compared to the domains: dyspnea, mastery and emotion. However, all patients experienced impairment in all domains.
Patient-reported psychosocial variables assessed by the questionnaires CRQ. HADS, CAT, MRC and self-rated health
Questionnaires Mean ± SD N (%) Range CRQ-D 4.21 ± 1.44 1–7 CRQ-M 4.88 ± 1.32 1–7 CRQ-E 4.81 ± 1.24 1–7 CRQ-F 3.93 ± 1.30 1–7 HADS-A 5.07 ± 3.92 0–17 HADS-D 5.77 ± 3.89 0–19 CAT 18.41 ± 6.68 2–38 MRC 3.35 ± 1.12 1–5 Very good 12 (6.6) Good 22 (12.0) reasonable 93 (50.8) Bad 45 (24.6) Very bad 11 (6.0)
CRQ domain scores with values from 1 (largest impairment) to 7 (no impairment). Each HADS subscale scores with values from 0 to 21 (high score corresponds to level of symptoms). CAT scores from 0 to 20 (high scores correspond to level of impairment). MRC scores from 1 to 5 (high score correspond to high intensity of dyspnea).
The mean CAT-score was 18.41 points. Forty-four percent had a CAT score ≥ 20 points and more than 90% a score ≥ 10 points. The mean MRC was 3.35 points and 73% had an MRC score ≥ 3.
Sixty patients (32%) had a HADS-D subscale score ≥ 8 point and forty-five patients (24%) a HADS-A subscale score ≥ 8 points. Thirteen percent of the patients had a both HADS A and a HADS D score ≥ 8 point.
More than half of the patients rated their health as reasonable and 30% as bad or very bad. However, 18.5% rated their health as very good or good.
Twenty-nine patients died during the data collection period of 1.5 year corresponding to a crude mortality rate of 12%. The majority, 70% died in the hospital, 24% died at home and 6% died at hospice. The patients who died consisted of 58.6% males, and 66% were living alone. On average 31% of the patients who died rated their health as bad or very bad. Their mean CRQ-domain scores were: CRQ-D 3.7 (±1.4), CRQ-F 3.4 (±1.4), CRQ-E 4.5 (±1.4), CRQ-M 4.6 (±1.5). Their mean CAT score was 18.54 (±4.6). They had a mean HADS-A score of 6.6 points (± 5.3) and a HADS-D score of 7.3 (± 5.1). The patients (n = 29) who died had an average of 1.52 points [95% CI, 0.10 to 2.94] higher HADS-D score compare to the rest of the patients (p = 0.0454). On the HADS-A, the difference was on average 1.51 points [95% CI, 0.07 to 2.95] higher score (p = 0.049). The frequency of ≥2 annual exacerbations were 41.4% in the patients who died compared to 34.1% among the rest of the patients. A multi logistic regression analysis did not show any significant association between mortality and CAT, MRC, CRQ, and HADS scores with and without adjustments for age and gender (data not shown). There was a significant association between age and mortality OR: 1.09, [1.001; 1.18] p = 0.05.
The overall data quality in terms of completed and returned questionnaires was acceptable, as all questionnaires expect self-rated health had a completeness > 80%. The completeness ranged between 76% for self-rated health to 93% for the CAT. Missing data present a serious problem in any study, and it is always an issue whether those who completed the questionnaires differ from those missing. Based on rule of thumps missing data between 5 and 20% is acceptable and considered expected and realistic in a population marked by severe disease [[
Our study contributes knowledge of the psychosocial status of patients with advanced COPD in a stable phase of the disease and show a widespread level of HRQoL impairment. Nearly all patients had a CAT score ≥ 10 points and more than 44% a CAT-score ≥ 20 points. The Global Initiative for Chronic Obstructive Lung Disease (GOLD) recommend a CAT score ≥ 10 points as a threefold for considering treatment for symptoms [[
Although the patients in our study were treated in an altered outpatient structure focusing on the patients' basic palliative needs [[
According to the CRQ was fatigue the problem affecting the patients' HRQoL most. Fatigue is a cardinal but multifaceted symptom of advanced COPD and described as a profound feeling of physical and psychological wariness that is not relieved by sleep or rest [[
In this study the prevalences of anxiety and depression were within the ranges of what is previous described for COPD outpatients in a stable phase of the disease [[
The patients who died (n = 29) had a clinically significant higher level of anxiety and depression compared to the rest of the patients [[
It is thought-provoking that despite the population was characterized by severe pulmonary disease, one-fifth was current smokers. Although patients with advanced COPD are in the last stage of the disease and presumably have a limited life span, smoking cessation still makes sense and contribute to prevent further deterioration [[
With this study we have described the characteristics of a population with advanced COPD. The prevalences of high CAT, MRC, HADS, or low CRQ scores were high, and indicate a need for a more intensive palliative care intervention than actually offered. Intensive palliative care should be individualized and address the needs that are currently most relevant to the patient concerned. Systematic screening of the symptom burden using validated questionnaires could be a method of targeting and intensifying a palliative effort.
Our results illustrate that if we for example define a CAT-score above 20 points as an indicator for intensified palliative needs [[
In Denmark, specialized palliative care is initially developed and targeted to cancer patients and organized in oncology. Currently, the need for specialized palliation and hospice stays among Danish cancer patients exceeds the current capacity and patients with cancer are often waitlisted before receiving a palliative offer (
This study has several limitations. The exact numbers and reason for not participating are not registered systemically, and we cannot know if the patients included are representative for the population with advanced COPD. It can be assumed that the patients included in this study and willing to complete several questionnaires are those who are least affected by their disease and thereby those with the best quality of life. We see the following strengths of our study. First, it was possible for us to include patients with advanced COPD. Second, our study sample was rather large compared to other studies investigating the symptom burden and quality of life in patients with advanced COPD [[
This study describes the characteristics of a population with advanced COPD in a stable phase of the disease. If a CAT-score above 20 points are used as an indicator for intensified palliative needs in patients with COPD, the target population will be huge and at the same time not target the patients who die. 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 HRQoL and how one out of five patients currently smokes.
The study was financially support by The Danish Lung Association Fund and The Danish Nursing Council's (DSR) research fund.
The authors would like to thank the patients with advanced COPD who despite their advanced disease made it a priority to participate and thereby provided the data for this study. Moreover, we owe a special thanks to all the CAPTAIN-nurses affiliated the outpatient clinic at Nordsjællands Hospital.
All authors contributed substantial toward data analysis, drafting and revising the paper and agree to be accountable for all aspect of the work. All authors contributed to the design of the study. DGB and ML collected and managed the data. DGB and BL performed the statistical analyzes and all authors contributed to the discussion and interpretation of the results. DGB lead on the manuscript preparation, but all authors have read and approved the manuscript.
The datasets analysed during this study are available from the corresponding author on reasonable request.
Patients were informed about the study in writing as well as verbally, and only included when they provided written consent for their participation. Patients were informed that they could withdraw from the study at any time and with no implications for their future treatment. Those who left the study for other reasons than death where kindly asked for permission to use their previous data.
Furthermore the study was approved by the Chief Executives at Nordsjællands Hospitals' Department of Pulmonary and Infectious Diseases in Denmark. The Ethics Committee (
Not applicable.
The authors declare that they have no competing interests.
• BMI
- Body Mass Index
• CAT
- The COPD Assessment Test
• CRQ
- The Chronic Respiratory Disease Questionnaire
• COPD
- Chronic Obstructive Pulmonary Disease
- FEV
1 - Forced Expiratory Volume in 1 s
• HADS
- The Hospital and Anxiety and Depression Scale
• HRQoL
- Health Related Quality of Life
• MRC
- The Medical Research Council Dyspnoea Scale
• NIV
- Non-invasive ventilation
• NSAID
- Nonsteroid Anti-inflammatory Agents
• SSRI
- Selective Serotonin Reuptake inhibitors
• TCA
- Tricyclic Antidepressant
• WHO
- World Health Organization
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