Unmet needs of patients with chronic obstructive pulmonary disease (COPD): A qualitative study on patients and doctors

Background: Chronic Obstructive Pulmonary Disease (COPD) is a chronic disease with repeated exacerbations resulting in gradual debilitation. The quality of life has been shown to be poor in patients with COPD despite efforts to improve self-management. However, the evidence on the benefit of self-management in COPD is conflicting. Whether this could be due to other unmet needs of patients have not been investigated. Therefore, we aimed to explore unmet needs of patients from both patients and doctors managing COPD. Methods: We conducted a qualitative study with doctors and patients in Malaysia. We used convenience sampling to recruit patients until data saturation. Eighteen patients and eighteen doctors consented and were interviewed using a semi-structured interview guide. The interviews were audio-recorded, transcribed verbatim and checked by the interviewers. Data were analysed using a thematic approach. Results: The themes were similar for both the patients and doctors. Three main themes emerged: knowledge and awareness of COPD, psychosocial and physical impact of COPD and the utility of self-management. Knowledge about COPD was generally poor. Patients were not familiar with the term chronic obstructive pulmonary disease or COPD. The word ‘asthma’ was used synonymously with COPD by both patients and doctors. Most patients experienced difficulties in their psychosocial and physical functions such as breathlessness, fear and helplessness. Most patients were not confident in self-managing their illness and prefer a more passive role with doctors directing their care. Conclusions: In conclusion, our study showed that knowledge of COPD is generally poor. There was mislabelling of COPD as asthma by both patients and physicians. This could have resulted in the lack of understanding of treatment options, outcomes, and prognosis of COPD. The misconception that cough due to COPD was contagious, and breathlessness that resulted from COPD, had important physical and psychosocial impact, and could lead to social isolation. Most patients and physicians did not favour self-management approaches, suggesting innovations based on self-management may be of limited benefit

The IRYSS-COPD appropriateness study: objectives, methodology, and description of the prospective cohort

<p>Abstract</p> <p>Background</p> <p>Patients with chronic obstructive pulmonary disease (COPD) often experience exacerbations of the disease that require hospitalization. Current guidelines offer little guidance for identifying patients whose clinical situation is appropriate for admission to the hospital, and properly developed and validated severity scores for COPD exacerbations are lacking. To address these important gaps in clinical care, we created the IRYSS-COPD Appropriateness Study.</p> <p>Methods/Design</p> <p>The RAND/UCLA Appropriateness Methodology was used to identify appropriate and inappropriate scenarios for hospital admission for patients experiencing COPD exacerbations. These scenarios were then applied to a prospective cohort of patients attending the emergency departments (ED) of 16 participating hospitals. Information was recorded during the time the patient was evaluated in the ED, at the time a decision was made to admit the patient to the hospital or discharge home, and during follow-up after admission or discharge home. While complete data were generally available at the time of ED admission, data were often missing at the time of decision making. Predefined assumptions were used to impute much of the missing data.</p> <p>Discussion</p> <p>The IRYSS-COPD Appropriateness Study will validate the appropriateness criteria developed by the RAND/UCLA Appropriateness Methodology and thus better delineate the requirements for admission or discharge of patients experiencing exacerbations of COPD. The study will also provide a better understanding of the determinants of outcomes of COPD exacerbations, and evaluate the equity and variability in access and outcomes in these patients.</p

Differences in subjective and objective respiratory parameters in patients with chronic obstructive pulmonary disease with and without pain

Signe Berit Bentsen1,2, Tone Rust&amp;oslash;en3,4, Christine Miaskowski51Stord/Haugesund University College, Department of Health Education, Haugesund, Norway; 2Haugesund Hospital, Department of Research, Haugesund, Norway; 3Department of Research and Development, Division of Emergencies and Critical Care, Oslo University Hospital, Ullev&amp;aring;l, Oslo, Norway; 4Lovisenberg Diaconal University College, Oslo, Norway; 5Department of Physiological Nursing, School of Nursing, University of California, San Francisco, California, USABackground: Few studies have evaluated the associations between respiratory parameters and pain in chronic obstructive pulmonary disease (COPD). The purpose of this study is to evaluate the differences in respiratory parameters between COPD patients who did and did not have pain.Methods: In this cross-sectional study respiratory parameters were measured by spirometry and the St Georges Respiratory Questionnaire. Patients responded to a single question that asked if they were generally bothered by pain.Results: Of the 100 patients, 45% reported that they were generally bothered by pain. Patients who had pain reported a higher number of comorbidities (P &amp;lt; 0.001) and higher breathlessness scores (P = 0.003). Physical dimensions of breathlessness were significantly associated with pain (P &amp;le; 0.03). The results of logistic regression analysis determined that a higher number of comorbidities (OR = 0.28; P = 0.026) and higher breathlessness scores (OR = 1.03; P = 0.003) made significant unique contributions to the prediction of pain group membership.Conclusions: Comorbidity and breathlessness were risk factors for pain and the physical dimensions of breathlessness were associated with pain.Keywords: COPD, pain, comorbidity, lung function, breathlessnes

The relationships of self-efficacy, physical activity, and paid work to health-related quality of life among patients with chronic obstructive pulmonary disease (COPD)

Randi Anden&aelig;s,1 Signe Berit Bentsen,2 Kari Hvinden,3,4 May Solveig Fagermoen,5,6 Anners Lerdal6,71Department of Nursing, Faculty of Health Science, Oslo and Akershus University College of Applied Sciences, Oslo, Norway; 2Department of Health Studies, Faculty of Social Sciences, University of Stavanger, Stavanger, Norway; 3LHL Helse AS, Glittreklinikken, Hakadal, Norway; 4Norwegian Advisory Unit for Learning and Mastery in Health, Oslo University Hospital, Oslo, Norway; 5Department of Gastroenterology, Oslo University Hospital, Oslo, Norway; 6Department of Nursing Science, Institute of Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway; 7Department of Research, Lovisenberg Diakonale Hospital, Oslo, NorwayPurpose: Although chronic obstructive pulmonary disease (COPD) primarily affects the lungs, it is regarded as a systemic disorder associated with comorbidity and physical deterioration, which often results in reduced levels of health-related quality of life (HRQoL). Self-efficacy is an important concept in self-management, which is vital for improving HRQoL in patients with COPD. The purpose of this study was to examine how general self-efficacy, leisure time physical activity, and sociodemographic variables such as employment status are related to the physical and mental health components of HRQoL in patients with COPD.Patients and methods: In this cross-sectional study, 97 COPD patients (54.6% male, mean age 64.6 years, standard deviation [SD] 9.5) beginning a pulmonary rehabilitation program completed three self-report questionnaires: the short form (SF)-12v2 Health Survey as a measure of HRQoL; the General Self-Efficacy Scale; and a standardized instrument measuring regular leisure time physical activity.Results: The physical health component median score was 31.3 (interquartile range [IQR] 16.3) and the mental health component median score was 45.9 (IQR 21.5). Two sets of linear regression analyses were performed, one predicting physical health and the other predicting mental health. The first analysis showed that better physical health was directly related to being in paid work (P-value &lt;0.001), but was not significantly related to age, sex, marital status, education, work status, physical activity, or self-efficacy. In the second analysis, better mental health was directly related to living with a partner, being physically active, and having higher self-efficacy (P-value &lt;0.001).Conclusion: The findings suggest that general self-efficacy has differential relationships to the two dimensions of HRQoL. Our results indicate that general self-efficacy, physical activity, and paid work might be important factors for improving HRQoL of persons with COPD, and should be taken into consideration in pulmonary rehabilitation.Keywords: chronic disease, employment, lung, rehabilitation, self-car

Effects of a COPD self-management support intervention: a randomized controlled trial

Heidi B Bringsvor,1,2 Eva Langeland,3 Bj&oslash;rg Fr&oslash;ysland Oftedal,2 Knut Skaug,1 J&ouml;rg Assmus,4 Signe Berit Bentsen5 1Department of Research and Innovation, Helse Fonna HF, Haugesund, Norway; 2Department of Quality and Health Technology, Faculty of Health Sciences, University of Stavanger, Stavanger, Norway; 3Department of Health and Caring Sciences, Western Norway University of Applied Sciences, Bergen, Norway; 4Center for Clinical Research, Department of Reserach and Innovation, Haukeland University Hospital, Bergen, Norway; 5SHARE-Centre for Resilience in Health Care, Department of Quality and Health Technology, Faculty of Health Sciences, University of Stavanger, Stavanger, Norway Background: This study examines the effects of the COPD-specific health promoting self-management intervention &ldquo;Better living with COPD&rdquo; on different self-management-related domains, self-efficacy, and sense of coherence (SOC). Methods: In a randomized controlled design, 182 people with COPD were allocated to either an intervention group (offered Better living with COPD in addition to usual care) or a control group (usual care). Self-management-related domains were measured by the Health Education Impact Questionnaire (heiQ) before and after intervention. Self-efficacy was measured by the General Self-Efficacy Scale (GSE) and SOC was measured by the 13-item Sense of Coherence Scale (SOC-13). Effects were assessed by ANCOVA, using intention-to-treat (ITT) analysis and per-protocol analysis (PPA). Results: The PPA and the ITT analysis showed significant positive changes on Constructive attitudes and approaches (heiQ) (ITT: P=0.0069; PPA:&nbsp;P=0.0021) and Skill and technique acquisition (heiQ) (ITT:&nbsp;P=0.0405; PPA:&nbsp;P=0.0356). Self-monitoring and insight (heiQ) showed significant positive change in the PPA (P=0.0494). No significant changes were found on the other self-management domains (heiQ), self-efficacy (GSE), or SOC (SOC-13). Conclusion: Better living with COPD had a significant positive short-term effect on some self-management-related domains, and could be an intervention contributing to the support of self-management in people with COPD. However, further work is needed to establish the clinical relevance of the findings and to evaluate the long-term effects. Keywords: constructive attitudes and approaches, Health Education Impact Questionnaire (heiQ), self-efficacy, self-monitoring and insight, sense of coherence, skill and technique acquisitio

Distinct pain profiles in patients with chronic obstructive pulmonary disease

Signe B Bentsen,1 Christine Miaskowski,2 Bruce A Cooper,3 Vivi L Christensen,4,5 Anne H Henriksen,6 Are M Holm,7,8 Tone Rust&oslash;en5,9 1Department of Quality and Health Technology, Faculty of Health Sciences, University of Stavanger, Stavanger, Norway; 2Department of Physiological Nursing, University of California, San Francisco, CA, USA; 3Department of Community Health Systems, University of California, San Francisco, CA, USA; 4Department of Master and Postgraduate Studies, Lovisenberg Diaconal University College, Oslo, Norway; 5Department of Research and Development, Division of Emergencies and Critical Care, Oslo University Hospital, Oslo, Norway; 6Department of Circulation and Medical Imaging, St Olav&rsquo;s University Hospital, Trondheim, Norway; 7Department of Respiratory Medicine, Oslo University Hospital, Oslo, Norway; 8Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway; 9Department of Nursing Science, Institute of Health and Society, University of Oslo, Oslo, Norway Background: Few studies have examined changes in the pain experience of patients with COPD and predictors of pain in these patients. Objectives: The objectives of the study were to examine whether distinct groups of COPD patients could be identified based on changes in the occurrence and severity of pain over 12&nbsp;months and to evaluate whether these groups differed on demographic, clinical, and pain characteristics, and health-related quality of life (HRQoL). Patients and methods: A longitudinal study of 267 COPD patients with very severe COPD was conducted. Their mean age was 63 years, and 53% were females. The patients completed questionnaires including demographic and clinical variables, the Brief Pain Inventory, and the St Georges Respiratory Questionnaire at enrollment, and 3, 6, 9, and 12 months follow-up. In addition, spirometry and the 6 Minute Walk Test were performed. Latent class analysis was used to identify subgroups of patients with distinct pain profiles based on pain occurrence and worst pain severity. Results: Most of the patients (77%) reported pain occurrence over 12 months. Of these, 48% were in the &ldquo;high probability of pain&rdquo; group, while 29% were in the &ldquo;moderate probability of pain&rdquo; group. For the worst pain severity, 37% were in the &ldquo;moderate pain&rdquo; and 39% were in the &ldquo;mild pain&rdquo; groups. Females and those with higher body mass index, higher number of comorbidities, and less education were in the pain groups. Patients in the higher pain groups reported higher pain interference scores, higher number of pain locations, and more respiratory symptoms. Few differences in HRQoL were found between the groups except for the symptom subscale. Conclusion: Patients with COPD warrant comprehensive pain management. Clinicians may use this information to identify those who are at higher risk for persistent pain. Keywords: chronic obstructive pulmonary disease, patient-reported outcomes, pain, pain occurrence, worst pain severity, latent profile analysi

Distinct symptom experiences in subgroups of patients with COPD

Vivi L Christensen,1&ndash;3 Tone Rust&oslash;en,2,4 Bruce A Cooper,5 Christine Miaskowski,6 Anne H Henriksen,7 Signe B Bentsen,8 Are M Holm2,9 1Division of Emergencies and Critical Care, Department of Research and Development, Oslo University Hospital, Ullev&aring;l, 2Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, 3Lovisenberg Diaconal University College, 4Department of Nursing Science, Institute of Health and Society, University of Oslo, Oslo, Norway; 5Department of Community Health Systems, 6Department of Physiological Nursing, University of California, San Francisco, CA, USA; 7Department of Circulation and Medical Imaging, St Olav&rsquo;s University Hospital, Trondheim, 8Department of Health Studies, University of Stavanger, Stavanger, 9Department of Respiratory Medicine, Oslo University Hospital, Rikshospitalet, Oslo, Norway Background: In addition to their respiratory symptoms, patients with COPD experience multiple, co-occurring symptoms. Objectives: The aims of this study were to identify subgroups of COPD patients based on their distinct experiences with 14 symptoms and to determine how these subgroups differed in demographic and clinical characteristics and disease-specific quality of life. Patients and methods: Patients with moderate, severe, and very severe COPD (n=267) completed a number of self-report questionnaires. Latent class analysis was used to identify subgroups of patients with distinct symptom experiences based on the occurrence of self-reported symptoms using the Memorial Symptom Assessment Scale. Results: Based on the probability of occurrence of a number of physical and psychological symptoms, three subgroups of patients (ie, latent classes) were identified and named &ldquo;high&rdquo;, &ldquo;intermediate&rdquo;, and &ldquo;low&rdquo;. Across the three latent classes, the pairwise comparisons for the classification of airflow limitation in COPD were not significantly different, which suggests that measurements of respiratory function are not associated with COPD patients&rsquo; symptom burden and their specific needs for symptom management. While patients in both the &ldquo;high&rdquo; and &ldquo;intermediate&rdquo; classes had high occurrence rates for respiratory symptoms, patients in the &ldquo;high&rdquo; class had the highest occurrence rates for psychological symptoms. Compared with the &ldquo;intermediate&rdquo; class, patients in the &ldquo;high&rdquo; class were younger, more likely to be women, had significantly more acute exacerbations in the past year, and reported significantly worse disease-specific quality of life scores. Conclusion: These findings suggest that subgroups of COPD patients with distinct symptom experiences can be identified. Patients with a higher symptom burden warrant more detailed assessments and may have therapeutic needs that would not be identified using current classifications based only on respiratory function. Keywords: symptom experience, latent class analysis, COPD, quality of lif

Symptom burden and self-management in persons with chronic obstructive pulmonary disease

Heidi B Bringsvor,1,2 Knut Skaug,1 Eva Langeland,3 Bj&oslash;rg Fr&oslash;ysland Oftedal,2 J&ouml;rg Assmus,4 Doris Gundersen,1 Richard H Osborne,5 Signe Berit Bentsen2 1Department of Research and Innovation, Helse Fonna HF, Haugesund, 2Department of Quality and Health Technology, University of Stavanger, Stavanger, 3Department of Nursing, Western Norway University of Applied Sciences, 4Center for Clinical Research, Haukeland University Hospital, Bergen, Norway; 5Health Systems Improvement Unit, School of Health and Social Development, Centre For Population Health Research, Deakin University, Burwood, Victoria, Australia Purpose: Self-management is crucial for effective COPD management. This study aimed at identifying associations between self-management and sociodemographic characteristics, clinical characteristics, and symptom burden in people with COPD. Patients and methods: In this cross-sectional study with 225 participants diagnosed with COPD grades II&ndash;IV, multiple linear regression analysis was conducted, using sociodemographic and clinical characteristics and symptom burden (COPD Assessment Test) as the independent variables and the eight self-management domains of the Health Education Impact Questionnaire (heiQ) as the outcome variables. Results: Higher symptom burden was significantly associated with worse scores in all self-management domains (p&lt;0.003), except for self-monitoring and insight (p=0.012). Higher disease severity (p=0.004) and numbers of comorbidities (p&lt;0.001) were associated with more emotional distress, and women scored higher than men on positive and active engagement in life (p=0.001). Higher score in pack-years smoking was associated with lower score in health-directed activities (p=0.006) and self-monitoring and insight (p&lt;0.001), and participation in organized physical training was associated with higher score in health-directed activities (p&lt;0.001). The final models explained 3.7%&ndash;31.7% of variance (adjusted R2) across the eight heiQ scales. Conclusion: A notable finding of this study was that higher symptom burden was associated with worse scores in all self-management domains, except for self-monitoring and insight. In addition, sex, disease severity, comorbidity, pack-years smoking, and participation in organized physical training were associated with one or two self-management domains. The study contributes to improved understanding of self-management in COPD. However, the explained variance levels indicate that more research needs to be done to uncover what else explains self-management domains in COPD. Keywords: COPD, Health Education Impact Questionnaire, COPD Assessment Test, self-management, symptoms, chronic diseas