Non-invasive ventilation in the care of patients with chronic obstructive pulmonary disease with palliative care needs: a scoping review.

BACKGROUND: Patients with severe chronic obstructive pulmonary disease (COPD) could have palliative care (PC) needs because of unmet needs such as dyspnoea. This may lead to anxiety and may have an impact on patients' ability to perform daily activities of living. PC can be started when patients with COPD have unmet needs and can be provided alongside disease-modifying therapies. Non-invasive ventilation (NIV) could be an important measure to manage dyspnoea in patients with COPD in need of PC. A scoping review was conducted to gain an overview of the existing research and to identify knowledge gaps. The aim of this scoping review was to systematically map published studies on the use of NIV in patients with COPD with PC needs, including the perspectives and experiences of patients, families, and healthcare professionals (HCPs). METHODS: This review was conducted following the framework of Arksey and O'Malley. The reporting of the review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. The review protocol was published. AMED, CINAHL, Embase, MEDLINE, PEDro, and PsycInfo were searched from inception to November 14, 2022. The included studies had to report the perspectives and experiences of COPD patients, relatives, and HCPs regarding NIV in the care of patients with COPD with PC needs. In pairs, the authors independently assessed studies' eligibility and extracted data. The data were organised thematically. The results were discussed in a consultation exercise. RESULTS: This review included 33 papers from 32 studies. Four thematic groupings were identified: preferences and attitudes towards the use of NIV; patient participation in the decision-making process of NIV treatment; conflicting results on the perceived benefits and burdens of treatment; and heterogenous clinical outcomes in experimental studies. Patients perceived NIV as a 'life buoy' to keep them alive. Many patients wanted to take part in the decision-making process regarding NIV treatment but expressed varying degrees of inclusion by HCPs in such decision-making. Conflicting findings were identified regarding the perceived benefits and burdens of NIV treatment. Diversity in heterogeneous clinical outcomes were reported in experimental studies. CONCLUSIONS: There is a need for more studies designed to investigate the effectiveness of NIV as a palliative measure for patients with COPD with PC needs using comprehensive outcomes. It is especially important to gain more knowledge on the experiences of all stakeholders in the use of home-based NIV treatment to these patients.

Implementation of remote home care: assessment guided by the RE-AIM framework.

BACKGROUND: Welfare technology interventions have become increasingly important in home-based palliative care for facilitating safe, time-efficient, and cost-effective methods to support patients living independently. However, studies evaluating the implementation of welfare technology innovations are scarce, and the empirical evidence for sustainable models using technology in home-based palliative care remains low. This study aimed to report on the use of the Reach Effectiveness Adoption Implementation Maintenance (RE-AIM) framework to assess the implementation of remote home care (RHC) a technology-mediated service for home-living patients in the palliative phase of cancer. Furthermore, it aimed to explore areas of particular importance determining the sustainability of technologies for remote palliative home-based care. METHODS: A secondary analysis of data collected by semi-structured interviews with patients with cancer in the palliative phase, focus groups, and semi-structured interviews with healthcare professionals (HCPs) experienced with RHC was performed. A deductive reflexive thematic analysis using RE-AIM dimensions was conducted. RESULTS: Five themes illustrating the five RE-AIM dimensions were identified: (1) Reach: protective actions in recruitment - gatekeeping, (2) Effectiveness: potential to offer person-centered care, (3) Adoption: balancing high touch with high tech, (4) Implementation: moving towards a common understanding, and (5) Maintenance: adjusting to what really matters. The RE-AIM framework highlighted that RHC implementation for patients in the palliative phase of cancer was influenced by HCP gatekeeping behavior, concerns regarding abandoning palliative care as a high-touch specialty, and a lack of competence in palliative care. Although RHC facilitated improved routines in patients' daily lives, it was perceived as a static service unable to keep pace with disease progression. CONCLUSIONS: A person-centered approach that prioritizes individual needs and preferences is necessary for providing optimal care. Although technologies such as RHC are not a panacea, they can be integrated as support for increasingly strained health services.

Patients' experiences with a welfare technology application for remote home care: A longitudinal study.

AIMS AND OBJECTIVES: To explore the longitudinal experiences using an application named remote home care for remote palliative care among patients with cancer living at home. BACKGROUND: Introducing welfare technology in home-based care for patients with cancer in the palliative phase is internationally suggested as a measure to remotely support palliative care needs. However, little is known about the experiences of patients utilising welfare technology applications to receive home-based care from healthcare professionals in a community care context. Although living with cancer in the palliative phase often presents rapidly changing ailments, emotions and challenges with patients' needs changing accordingly, no studies exploring the longitudinal experiences of patients were found. DESIGN: A qualitative study with a longitudinal, exploratory design. METHODS: Data were collected through individual interviews with 11 patients over 16 weeks. The data were analysed using qualitative content analysis. The COREQ checklist guided the reporting of the study. RESULTS: Three themes were identified: (1) potential to facilitate self-governance of life-limiting illness in daily life, (2) need for interpersonal relationships and connections, and (3) experiences of increased responsibility and unclear utility of the Remote Home Care. CONCLUSION: The results showed that remote home care facilitated patients' daily routines, symptom control and improved illness-management at home. Interpersonal relationships with healthcare professionals were considered pivotal for satisfactory follow-up. Infrastructural glitches regarding data access, information sharing and lack of continuous adjustments of the application represented major challenges, with the potential to impose a burden on patients with cancer in the palliative phase. RELEVANCE TO CLINICAL PRACTICE: By exploring the experiences of patients in palliative care over time as the disease progresses, this study provides constructive insights for the design and development of welfare technology applications and optimal care strategies. PATIENT OR PUBLIC CONTRIBUTION: The remote home care was developed by interdisciplinary healthcare professionals.

Stability of distinct symptom experiences in patients with chronic obstructive pulmonary disease (COPD).

PURPOSE: This study aimed to examine reclassification rates among classes of chronic obstructive pulmonary disease (COPD) patients based on their distinct symptom experiences and to assess how these subgroups differed in symptom scores and health-related quality of life (HRQoL) outcomes over one year. Moreover, we wished to assess how these subgroups differed in demographic and clinical characteristics at 12 months. PATIENTS AND METHODS: This is a follow-up study of 267 patients with moderate, severe, and very severe COPD. Based on their distinct symptom experiences using the Memorial Symptom Assessment Scale (MSAS), three subgroups (i.e., "high", "intermediate", and "low") were identified at baseline. In the present study, transitions between the subgroups at three, six, nine, and 12 months were investigated and calculated as reclassification rates. Differences among the subgroups in symptom scores and HRQoL at each time point and demographic and clinical characteristics at 12 months were evaluated using analysis of variance with post hoc comparisons. RESULTS: Almost 65% were still in the "high" class after 12 months. At 12 months, pairwise comparisons for respiratory function measurements were not significantly different. Compared to the "intermediate" and "low" class, patients in the "high" class were more likely to be women and had significantly more comorbidities, reported a significantly higher number of symptoms at all time points, and worse HRQoL scores. CONCLUSION: Our findings suggest that the pattern of a high symptom burden in COPD is consistent over time. The patients' individual symptom experiences should be the primary focus of treatment.

Non-invasive ventilation in the palliative care of patients with chronic obstructive pulmonary disease: a scoping review protocol.

INTRODUCTION: Patients with advanced chronic obstructive pulmonary disease (COPD) experience a great symptom burden. Breathlessness is a very frequently reported symptom that negatively affects all aspects of daily life and could lead to fear of dying. Non-invasive ventilation (NIV) could be an important palliative measure to manage breathlessness in patients with advanced COPD. We decided to conduct a scoping review to attain an overview of the existing research and to identify knowledge gaps. This scoping review aims to systematically map published studies on the use of NIV in the palliative care of COPD patients, including the perspectives and experiences of patients, families and healthcare professionals. METHODS AND ANALYSIS: This scoping review will employ the framework of Arksey and O'Malley. The reporting will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. A comprehensive and systematic search strategy will be developed in cooperation with an experienced librarian. Database searches will be conducted in AMED, PEDro, Embase, CINAHL, PsycInfo and MEDLINE in February 2021. Pairs of authors will independently assess studies' eligibility and extract data using a standardised data-charting form. The data will be inductively summarised and organised thematically. The results will be discussed with an advisory board consisting of nurses and physicians from respiratory and intensive care units. ETHICS AND DISSEMINATION: Approval for the workshop with the advisory board has been attained from the Norwegian Centre for Research Data (480222), and approval will be attained from the Personal Data Protection Officers of the participating hospitals. All advisory board participants will sign an informed written consent before participation. The results could contribute to developing the body of evidence on the use of NIV in the palliative care of COPD patients and serve to identify directions for future research.

Postgraduate Students' Experience of Using a Learning Management System to Support Their Learning: A Qualitative Descriptive Study.

INTRODUCTION: Educational institutions worldwide have implemented learning management systems (LMSs) to centralise and manage learning resources, educational services, learning activities and institutional information. LMS has mainly been used by teachers as storage and transfer of course material. To effectively utilise digital technologies in education, there is a need for more knowledge of student experiences with digital technology, such as LMSs and especially regarding how LMSs can contribute to student engagement and learning. OBJECTIVE: This study aimed to gain knowledge about postgraduate nursing students' experiences with the use of LMS in a subject in an advanced practice nursing master's programme. METHODS: A qualitative method with a descriptive design was employed. Two focus group interviews were performed with eight postgraduate nursing students from an advanced practice nursing programme at a university college in Norway. Data were analysed using qualitative content analysis. RESULTS: Three themes emerged from the data material: 1) A course structure that supports learning; 2) LMS tools facilitate preparation, repetition and flexibility; and 3) own responsibility for using the LMS for preparation before on-campus activities. CONCLUSION: The course structure within the LMS seemed to be important to enhance postgraduate students' ability to prepare before on-campus activities. Implementation and use of LMS tools can facilitate preparation, repetition and flexibility, especially when postgraduate students study difficult topics. Postgraduate students seem to have different views regarding their own responsibility for using the LMS to prepare before on-campus activities.

Implementing welfare technology in palliative homecare for patients with cancer: a qualitative study of health-care professionals' experiences.

BACKGROUND: Introducing welfare technology in home-based palliative care has been suggested to be beneficial for improving access to health care at home and enhancing patients' feelings of security and safety. However, little is known about the experiences of municipal health-care professionals using welfare technology in palliative home care. The aim of this study was to explore municipal health-care professionals' experiences regarding the significant challenges, facilitators, and assessments associated with implementing a technological solution named "remote home care" in palliative home care for patients with cancer. METHODS: A qualitative, descriptive, exploratory design was used. Data were collected through focus-group interviews and individual semi-structured interviews with interdisciplinary health-care professionals who had experience using remote home care in clinical encounters with cancer patients who were in the palliative phase and living at home. Data were analyzed using qualitative content analysis. RESULTS: Three themes were identified: 1) shifting from objective measures to assessing priorities for patients, 2) lack of experience and personal distress regarding cancer inhibits professional care, and 3) prominent organizational challenges undermine the premise of remote home care. CONCLUSION: The results showed that shifting from a disease-focused to a person-centered approach enables health-care professionals to assess patients' personal priorities. However, health-care professionals' uncertainty and lack of knowledge and experience, along with organizational issues concerning information-sharing, represent great challenges that have the potential to inhibit professional care. The availability of networks through which difficult issues can be discussed was highlighted as being a fundamental resource for facilitating the provision of care.

Changes in and predictors of pain and mortality in patients with chronic obstructive pulmonary disease.

This longitudinal study of patients with chronic obstructive pulmonary disease (COPD) aimed to investigate changes in pain characteristics (i.e., occurrence, intensity, and interference) and covariates associated with pain from study enrollment to 12 months, and to investigate if the different pain characteristics were associated with 5-year mortality. In total, 267 patients with COPD completed questionnaires five times over 1 year. The mean age of the patients was 63 years (standard deviation: 9.0), 53% were women, and 46% had very severe COPD. Median number of comorbidities was 2.0 (range: 0-11) and 47% of patients reported back/neck pain. Mixed models and Cox regression models were used for analyses. In total, 60% of the patients reported pain at baseline, and 61% at 12 months. The mixed model analyses revealed that those with better forced expiratory volume in 1 s (% predicted), more comorbidities, only primary school education, and more respiratory symptoms reported significantly higher average pain intensity. Moreover, those with more comorbidities, more respiratory symptoms, and more depression reported higher pain interference with function. At the 5-year follow-up, 64 patients (24%) were deceased, and the cumulative 5-year mortality rate was 22% (95% confidence interval [19-25]). Older age, lower forced expiratory volume in 1 s (% predicted), and higher pain interference at enrollment were all independently and significantly associated with higher 5-year mortality. Our findings show that many patients with COPD have persistent pain, and awareness regarding comorbidities and how pain interferes with their lives is needed.

Effectiveness of nursing interventions for breathlessness in people with chronic obstructive pulmonary disease: A systematic review and meta-analysis.

AIM: To critically review and synthesize the findings of studies that evaluated the effectiveness of nursing interventions for improving breathlessness in adults with chronic obstructive pulmonary disease. BACKGROUND: Systematic reviews of nursing interventions for breathlessness in people with chronic obstructive pulmonary disease have not been specifically addressed. DESIGN: Systematic review with meta-analysis. DATA SOURCES: A systematic search of Medline, CINAHL, PsycINFO and Embase was performed for studies published between January 2000 and June 2017. REVIEW METHODS: Risk of bias, data extraction and meta-analysis were conducted using Cochrane methodology. The quality of evidence was assessed using the GRADE approach. RESULTS: Twenty papers were included. A meta-analysis of interventions performed at home, including two trials, showed a significant effect in favour of experimental groups for the symptom score of the St. George Respiratory Questionnaire compared with controls. A meta-analysis of interventions performed in clinics with home follow-up showed a significant effect in favour of experimental groups for the mastery and fatigue scores of the Chronic Respiratory Questionnaire compared with controls. In this category of intervention, an additional meta-analysis showed a significant effect in favour of experimental groups for the symptom, activity and total scores of the St. George Respiratory Questionnaire compared with controls. The quality of evidence was assessed to be very low to moderate. CONCLUSION: The results are equivocal as to whether nursing interventions performed at home and nursing interventions performed in hospital with follow-up improve breathlessness in people with chronic obstructive pulmonary disease.

Distinct pain profiles in patients with chronic obstructive pulmonary disease.

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 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 "high probability of pain" group, while 29% were in the "moderate probability of pain" group. For the worst pain severity, 37% were in the "moderate pain" and 39% were in the "mild pain" 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.

Distinct symptom experiences in subgroups of patients with COPD.

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 "high", "intermediate", and "low". 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' symptom burden and their specific needs for symptom management. While patients in both the "high" and "intermediate" classes had high occurrence rates for respiratory symptoms, patients in the "high" class had the highest occurrence rates for psychological symptoms. Compared with the "intermediate" class, patients in the "high" 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.