Effects of Asthma on the Performance of Activities of Daily Living: A Retrospective Study.

The study aim was to identify the most problematic self--reported activities of daily living (ADLs). In a retrospective study, 1935 problematic ADLs were reported by 538 clients with 95% experiencing two or more problematic ADLs. Problematic ADLs were assessed by occupational therapists using the Canadian Occupational Performance Measure with walking (67%), household activities (41%), and climbing the stairs (41%) identified as the most prevalent problematic ADLs. Significant but weak associations were found between clinical determinants (e.g. physical, psychosocial) and problematic ADLs. The wide variety of problematic ADLs and the absence of a strong association with clinical determinants emphasizes the need for using individualized interview-based performance measures in clients with asthma.

Association of inadequate social support and clinical outcomes in patients with chronic obstructive pulmonary disease - A cross-sectional study.

INTRODUCTION: In patients with chronic obstructive pulmonary disease (COPD), loneliness and social isolation are associated with increased morbidity and decreased mobility, self-reliance, and health-related quality of life. Social support has been shown to improve these outcomes. AIMS: This cross-sectional study aimed to investigate the level of experienced social support and the clinical outcomes associated with inadequate social support among patients with COPD with a resident loved one. METHODS: Level of social support was assessed with the Medical Outcomes Study - Social Support Survey (MOS-SSS) in patients with COPD with a resident loved one. Patients were sub-grouped into adequate or inadequate social support. Multiple clinical outcomes were assessed, including lung function, degree of dyspnoea, health status, symptoms of anxiety and depression, the degree of care dependency, functional status, and mobility. RESULTS: The study included 191 Dutch patients with COPD (53.4% men, age: 65.6 ± 8.9 years, FEV1: 47.3 ± 17.7% predicted). Eighteen percent of the patients reported inadequate social support. Patients with inadequate social support reported a significantly symptom severity of COPD (p = 0.004), a higher care dependency level (p = 0.04) and a higher level of depression (p = 0.004) compared to patients with adequate social support. Other traits were comparable for both groups. CONCLUSION: Patients with COPD with a resident loved one who perceive an inadequate level of social support are more likely to report a higher impact of COPD, a higher care dependency and symptoms of depression. Other characteristics are comparable with patients who perceive adequate social support.

Integrating palliative care education in pulmonary rehabilitation: a randomized controlled study protocol.

BACKGROUND: Palliative care addresses multiple unmet needs of people with chronic obstructive pulmonary disease (COPD) or interstitial lung diseases (ILD) and their family and/or friend caregivers, but it remains highly underused. Pulmonary rehabilitation (PR) may provide a key opportunity to introduce palliative care. We aim to explore the effects of palliative care education as part of PR on knowledge about this field in people with COPD or ILD and their family and/or friend caregivers. METHODS: A randomized controlled study will compare PR with palliative care education (experimental) with traditional PR (control) in people with COPD or ILD and their family and/or friend caregivers. Family and/or friend caregivers will be invited to take part in education and psychosocial support sessions. In addition to the usual educational content, the experimental group will have a session on palliative care, a "Peer-to-peer session", two "Get-apart sessions" and online sessions. The "Peer-to-peer session" and the "Get-apart sessions" will be discussions about topics suggested by participants. The "Get-apart sessions" will be dedicated to people with COPD or ILD apart from their family and/or friend caregivers and vice versa. The online sessions will be zoom meetings to discuss any health-related issues raised by participants, at a flexible time. A mixed-methods approach will be used to evaluate the outcomes. The primary outcome will be knowledge about palliative care. Secondary outcomes will include attitude towards palliative care referral, symptoms, disease impact, health-related quality of life, needs, knowledge about the disease, burden of providing care, adherence, adverse events and referral to a specialist palliative care team. Quantitative and qualitative data will be collected at baseline and end of PR. At 6-months post-PR, only patient-reported outcomes will be collected. For the primary outcome, time*group interaction will be analyzed with mixed analysis of variance. DISCUSSION: This study aims to demonstrate the impact of integrating palliative care into the PR education program. TRIAL REGISTRATION: The trial was registered in the ClinicalTrials.gov U.S. National Library of Medicine, on 1st September, 2023 (NCT06046547).

Impact of post-COVID-19 condition on health status and activities of daily living: the PRIME post-COVID study.

OBJECTIVE: To assess health and activities of daily living (ADL) in SARS-CoV-2-positive adults with and without post-COVID-19 condition (PCC) and compare this with negative tested individuals. Furthermore, different PCC case definitions were compared with SARS-CoV-2-negative individuals. METHODS: All adults tested PCR positive for SARS-CoV-2 at the Public Health Service South Limburg (Netherlands) between June 2020 and November 2021 (n=41 780) and matched PCR negative individuals (2:1, on age, sex, year-quarter test, municipality; n=19 875) were invited by email. Health (five-level EuroQol five-dimension (EQ5D) index and EuroQol visual analogue scale (EQVAS)) and ADL impairment were assessed. PCC classification was done using the WHO case definition and five other common definitions. RESULTS: In total, 8409 individuals (6381 SARS-CoV-2 positive; 53±15 years; 57% female; 9 (7-11) months since test) were included. 39.4% of positives had PCC by the WHO case definition (EQVAS: 71±20; EQ5D index: 0.800±0.191; ADL impairment: 30 (10-70)%) and perceived worse health and more ADL impairment than negatives, that is, difference of -8.50 points (95% CI -9.71 to -7.29; p<0.001) for EQVAS, which decreased by 1.49 points (95% CI 0.86 to 2.12; p<0.001) in individuals with PCC for each comorbidity present, and differences of -0.065 points (95% CI -0.074 to -0.056; p<0.001) for EQ5D index, and +16.72% (95% CI 15.01 to 18.43; p<0.001) for ADL impairment. Health and ADL impairment were similar in negatives and positives without PCC. Replacing the WHO case definition with other PCC definitions yielded comparable results. CONCLUSIONS: Individuals with PCC have substantially worse health and more ADL impairment than negative controls, irrespective of the case definition. Authorities should inform the public about the associated burden of PCC and enable adequate support.

Development of the conversation tool "I-HARP for COPD" for early identification of palliative care needs in patients with chronic obstructive pulmonary disease.

OBJECTIVES: This study aimed to develop the conversation tool "I-HARP for COPD" for timely identification of palliative care needs in Dutch patients with chronic obstructive pulmonary disease (COPD). METHODS: An iterative and participatory research design was used to develop "I-HARP for COPD". There were 2 phases to the development of "I-HARP for COPD": content development and testing. A review of current literature, parallel focus groups, and a questionnaire among experts were used to develop the content of "I-HARP for COPD". "I-HARP for COPD" was then assessed by health-care professionals (HCPs) in clinical practice for understanding, difficulty, and relevance. RESULTS: A total of 46 HCPs, 6 patients, 1 informal caregiver, and 1 bereaved informal caregiver participated in this study. "I-HARP for COPD" included 14 screening questions, additional in-depth questions, and recommendations to address identified needs. The content of "I-HARP for COPD" was accepted by 86.2% of the HCPs. SIGNIFICANCE OF RESULTS: "I-HARP for COPD" was successfully developed for providing guidance in the palliative care of Dutch patients with COPD and their informal caregivers. By supporting HCPs with "I-HARP for COPD", they are better able to timely identify and direct palliative care needs.

Fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers: a scoping review.

BACKGROUND: Nursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and competences. Only fragmented knowledge is available concerning important fundamentals in end-of-life communication performed by nursing staff. OBJECTIVE: This review aimed to explore the fundamentals of end-of-life communication as part of advance care planning in the hospital, nursing home and home care setting, from the perspective of the nursing staff, the older person, and the family caregiver. DESIGN: Scoping review. METHODS: A literature search in PubMed, PsycINFO, CINAHL and Google (Scholar) was conducted on August 20, 2022. The search strategy followed the sequential steps as described in the Joanna Briggs Institute Manual. Peer-reviewed articles of empirical research and gray literature written in English or Dutch and published from 2010 containing fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers in the hospital nursing home or home care setting were considered eligible for review. RESULTS: Nine studies were included, and four themes were composed, reflecting 11 categories. Nursing staff attunes end-of-life communication to the values and needs of older people to approach the process in a person-centered manner. This approach requires additional fundamentals: building a relationship, assessing readiness, timing and methods to start the conversation, communication based on information needs, attention to family relationships, a professional attitude, improving communication skills, listening and non-verbal observation skills, and verbal communication skills. CONCLUSIONS: This review is the first to compile an overview of the fundamentals of end-of-life communication performed by nursing staff. Building a nursing staff-older-person relationship is the most important foundation for engaging in a person-centered end-of-life communication process. Knowing each other enables nursing staff to have a sense of older people's readiness, determine the right timing to initiate an end-of-life conversation, identify specific needs, and accurately apply (non-)verbal observation skills. end-of-life communication is not a one-time conversation, but a complex process that takes time, effort, and genuine interest in each other.

Symptoms and quality of life before, during, and after a SARS-CoV-2 PCR positive or negative test: data from Lifelines.

This study evaluates to what extent symptoms are present before, during, and after a positive SARS-CoV-2 polymerase chain reaction (PCR) test, and to evaluate how the symptom burden and quality of Life (QoL) compares to those with a negative PCR test. Participants from the Dutch Lifelines COVID-19 Cohort Study filled-out as of March 2020 weekly, later bi-weekly and monthly, questions about demographics, COVID-19 diagnosis and severity, QoL, and symptoms. The study population included those with one positive or negative PCR test who filled out two questionnaires before and after the test, resulting in 996 SARS-CoV-2 PCR positive and 3978 negative participants. Nearly all symptoms were more often reported after a positive test versus the period before the test (p < 0.05), except fever. A higher symptom prevalence after versus before a test was also found for nearly all symptoms in negatives (p < 0.05). Before the test, symptoms were already partly present and reporting of nearly all symptoms before did not differ between positives and negatives (p > 0.05). QoL decreased around the test for positives and negatives, with a larger deterioration for positives. Not all symptoms after a positive SARS-CoV-2 PCR test might be attributable to the infection and symptoms were also common in negatives.

European Respiratory Society clinical practice guideline: palliative care for people with COPD or interstitial lung disease.

There is increased awareness of palliative care needs in people with COPD or interstitial lung disease (ILD). This European Respiratory Society (ERS) task force aimed to provide recommendations for initiation and integration of palliative care into the respiratory care of adult people with COPD or ILD. The ERS task force consisted of 20 members, including representatives of people with COPD or ILD and informal caregivers. Eight questions were formulated, four in the Population, Intervention, Comparison, Outcome format. These were addressed with full systematic reviews and application of Grading of Recommendations Assessment, Development and Evaluation for assessing the evidence. Four additional questions were addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations. The following definition of palliative care for people with COPD or ILD was agreed. A holistic and multidisciplinary person-centred approach aiming to control symptoms and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers. Recommendations were made regarding people with COPD or ILD and their informal caregivers: to consider palliative care when physical, psychological, social or existential needs are identified through holistic needs assessment; to offer palliative care interventions, including support for informal caregivers, in accordance with such needs; to offer advance care planning in accordance with preferences; and to integrate palliative care into routine COPD and ILD care. Recommendations should be reconsidered as new evidence becomes available.

Respiratory and non-respiratory symptoms in patients with IPF or sarcoidosis and controls.

INTRODUCTION: Besides dyspnoea and cough, patients with idiopathic pulmonary fibrosis (IPF) or sarcoidosis may experience distressing non-respiratory symptoms, such as fatigue or muscle weakness. However, whether and to what extent symptom burden differs between patients with IPF or sarcoidosis and individuals without respiratory disease remains currently unknown. OBJECTIVES: To study the respiratory and non-respiratory burden of multiple symptoms in patients with IPF or sarcoidosis and to compare the symptom burden with individuals without impaired spirometric values, FVC and FEV1 (controls). METHODS: Demographics and symptoms were assessed in 59 patients with IPF, 60 patients with sarcoidosis and 118 controls (age ≥18 years). Patients with either condition were matched to controls by sex and age. Severity of 14 symptoms was assessed using a Visual Analogue Scale. RESULTS: 44 patients with IPF (77.3% male; age 70.6±5.5 years) and 44 matched controls, and 45 patients with sarcoidosis (48.9% male; age 58.1±8.6 year) and 45 matched controls were analyzed. Patients with IPF scored higher on 11 symptoms compared to controls (p<0.05), with the largest differences for dyspnoea, cough, fatigue, muscle weakness and insomnia. Patients with sarcoidosis scored higher on all 14 symptoms (p<0.05), with the largest differences for dyspnoea, fatigue, cough, muscle weakness, insomnia, pain, itch, thirst, micturition (night, day). CONCLUSIONS: Generally, respiratory and non-respiratory symptom burden is significantly higher in patients with IPF or sarcoidosis compared to controls. This emphasizes the importance of awareness for respiratory and non-respiratory symptom burden in IPF or sarcoidosis and the need for additional research to study the underlying mechanisms and subsequent interventions.

I want to be seen as myself: needs and perspectives of persons with dementia concerning collaboration and a possible future move to the nursing home in palliative dementia care.

Introduction: Interprofessional collaboration (IPC) within and during movements between care settings is crucial for optimal palliative dementia care. The objective of this study was to explore the experiences of persons with dementia regarding collaboration with and between healthcare professionals (HCPs) and their perceptions of a possible future move to the nursing home (NH) in palliative dementia care. Method: We conducted a cross-sectional qualitative study and performed semi-structured interviews with a purposive sample of persons with dementia living at home (N = 18). Data analysis involved content analysis. Results: Our study demonstrated that even though most persons with dementia find it difficult to perceive the collaboration amongst HCPs, they could describe their perceived continuity of care (Theme 1. My perception of collaboration among HCPs). Their core needs in collaboration with HCPs were receiving information, support from informal caregivers, personal attention and tailored care (Theme 2. My needs in IPC). Regarding a possible future move to the NH, persons with dementia cope with their current decline, future decline and a possible future move to the NH (Theme 3. My coping strategies for a possible future move to the NH). They also prefer to choose the NH, and continue social life and activities in their future NH (Theme 4. My preferences when a NH becomes my possible future home). Conclusion: Persons with dementia are collaborative partners who could express their needs and preferences, if they are willing and able to communicate, in the collaboration with HCPs and a possible future move to the NH.

Is being able to walk to the letterbox life-changing? A qualitative assessment of measures of improvement in persistent breathlessness.

Exploring clinically meaningful measures of improvement for people with persisting breathlessness https://bit.ly/3WaCzFh.

Impact of Coronavirus Disease 2019-Related Infection Prevention and Control Measures on the Occurrence of COPD Exacerbations During Inpatient Pulmonary Rehabilitation.

Rationale: A significant reduction in hospitalizations for acute exacerbations of COPD (AECOPDs) has been reported during the coronavirus disease 2019 (COVID-19) pandemic. It remains unclear whether this reduction is the result of health care avoidance by patients, or of infection prevention and control (IPC) measures. Objectives: Our objective was to explore the impact of COVID-19-related IPC measures on the occurrence of AECOPD in a real-life inpatient pulmonary rehabilitation (PR) setting, thereby ruling out potential effects of health care avoidance. Methods: Patients with COPD admitted for 8 weeks of inpatient PR at Ciro (Horn, the Netherlands) between October 2020 and March 2021, the first winter with full COVID-19-related IPC measures,were compared to patients admitted during the same period in previous years (2017-2018, 2018-2019, and 2019-2020). Electronic medical records were retrospectively screened for the occurrence of moderate to severe AECOPDs, drop-out, and mortality. Results: A total of 501 patients with COPD (median age 66.6 [interquartile range (IQR) 60.3-71.9] years, 43.1% male, forced expiratory volume in 1 second [FEV1] 35.9 [26.8-50.6] % predicted) were analyzed. During 2020-2021, 22 patients (31.0%) experienced ≥1 AECOPD compared to 43 patients (33.6%) in 2019-2020, 55 patients (36.9%) in 2018-2019, and 83 patients (54.2%) in 2017-2018. This represents a 25.4% reduction in 2020-2021 compared to the average of the previous 3 periods, p=0.077. No differences in AECOPD severity, drop-out, or mortality were observed. Conclusions: COVID-19-related IPC measures did not significantly reduce the AECOPD rate during inpatient PR in a single-center setting. The current findings suggest that avoidance of health care may be an important factor in the observed reduction of AECOPD-related hospitalizations during the pandemic and that the value of the strict COVID-19-related IPC measures for the prevention of AECOPDs warrants further research.

Methods to assess adults' learning styles and factors affecting learning in health education: A scoping review.

OBJECTIVES: To develop learner-centered education, knowledge about learning styles and factors that affect the ability to learn in patients and their significant others are essential. The present scoping review aims to identify current evidence on 1) how learning styles are assessed within health education, for adult patients as well as their significant others and 2) factors affecting learning in adult patients and their significant others who receive health education. METHODS: Systematic literature searches were performed in ERIC, PubMed, Web of Science and PsycINFO. INCLUSION CRITERIA: 1) participants ≥ 18 years; 2) participants were patients or significant others; 3) assessment of learning style and/or factors affecting learning; and 4) health education as context. RESULTS: 45 articles were included. Learning style within health education can be assessed with multiple choice questions, qualitative methods and a validated questionnaire. Health literacy was the most reported factor affecting learning, followed by anxiety and illness condition. CONCLUSIONS: Prior to the development of learner-centered education for patients and significant others, learning styles as well as factors affecting learning should be assessed in both patients and significant others. PRACTICE IMPLICATIONS: The process of learning is complex, and it is a shared responsibility of both the learner and the educator.

Physical and mental fatigue in people with non-communicable chronic diseases.

BACKGROUND: Fatigue is frequently reported in people with a non-communicable chronic disease. More insight in the nature of this symptom may enhance targeted treatment of fatigue. In this study, we aimed to gain more insight in the prevalence of different types of fatigue and in current prescribed treatment strategies to reduce fatigue in non-communicable chronic diseases. METHODS: People with non-communicable chronic diseases were contacted via public, non-profit, disease-specific health funds and patient associations and invited to complete a web-based survey. The survey included a general question about the experience ("Do you now or have you ever had complaints of fatigue?") and nature of fatigue (physically/mentally/combination), the Checklist Individual Strength-subscale subjective fatigue (CIS-Fatigue; 8-56 points), self-constructed questions for the distinction between physical and mental fatigue (both 3-21 points) and questions on prescribed treatments for fatigue. RESULTS: In total, 4199 participants (77% females) completed the online survey. 3945 participants (94.0%) reported experiencing fatigue, of which 64.4% reported a combination of both physical and mental fatigue. Median CIS-Fatigue score was 41 (32-48) points, with 68% of the participants reporting severe fatigue (≥36 points). Median scores for physical and mental fatigue were 15 (11-18) and 12 (8-16) points, respectively. In 55% of the participants, fatigue was only occasionally or never discussed with the healthcare professional, and only 23% of the participants were prescribed a treatment for fatigue. Participants often reported no effect or even an increase in fatigue after treatment. CONCLUSIONS: Findings indicate that both physical and mental fatigue are often experienced simultaneously in people with non-communicable chronic diseases, but can also occur separately. Fatigue is often only occasionally or never discussed, let alone treated, highlighting the need to raise awareness among healthcare professionals. Future studies are needed to gain more insight in underlying factors of fatigue in non-communicable chronic diseases, its impact on daily life and development and evaluation of targeted treatment strategies.Key messages:Both physical and mental fatigue are frequently present in people with non-communicable chronic diseases.Fatigue is often only occasionally or never discussed during consultation with the physician, highlighting the need to raise awareness among healthcare professionals for adequate screening and evaluating of fatigue in people with non-communicable chronic diseases.Only less than a quarter of the people with non-communicable chronic diseases who reported to experience fatigue were prescribed a treatment for fatigue, which was often experienced as ineffective.

Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement.

Background: Patients with serious respiratory illness and their caregivers suffer considerable burdens, and palliative care is a fundamental right for anyone who needs it. However, the overwhelming majority of patients do not receive timely palliative care before the end of life, despite robust evidence for improved outcomes. Goals: This policy statement by the American Thoracic Society (ATS) and partnering societies advocates for improved integration of high-quality palliative care early in the care continuum for patients with serious respiratory illness and their caregivers and provides clinicians and policymakers with a framework to accomplish this. Methods: An international and interprofessional expert committee, including patients and caregivers, achieved consensus across a diverse working group representing pulmonary-critical care, palliative care, bioethics, health law and policy, geriatrics, nursing, physiotherapy, social work, pharmacy, patient advocacy, psychology, and sociology. Results: The committee developed fundamental values, principles, and policy recommendations for integrating palliative care in serious respiratory illness care across seven domains: 1) delivery models, 2) comprehensive symptom assessment and management, 3) advance care planning and goals of care discussions, 4) caregiver support, 5) health disparities, 6) mass casualty events and emergency preparedness, and 7) research priorities. The recommendations encourage timely integration of palliative care, promote innovative primary and secondary or specialist palliative care delivery models, and advocate for research and policy initiatives to improve the availability and quality of palliative care for patients and their caregivers. Conclusions: This multisociety policy statement establishes a framework for early palliative care in serious respiratory illness and provides guidance for pulmonary-critical care clinicians and policymakers for its proactive integration.

Differences in Pulmonary and Extra-Pulmonary Traits between Women and Men with Chronic Obstructive Pulmonary Disease.

Background: Evidence suggests sex-related differences in chronic obstructive pulmonary disease (COPD). Whether these differences are reflected in the prevalence of treatable traits remains unknown. Methods: Two samples of patients referred to secondary (n = 530) or tertiary care (n = 2012) were analyzed. Men and women were matched for age, forced expiratory volume in 1 s and body mass index. Sex-related differences were tested using t-tests, Mann-Whitney U, or chi-square tests. Results: Frequent exacerbations (30.5 vs. 19.7%), high cardiovascular risk (88.1 vs. 66.2%) and activity-related severe dyspnea (50.9 vs. 34.8%) were more prevalent in women in secondary care (p < 0.05). Severe hyperinflation (43.0 vs. 25.4%), limited diffusing capacity (79.6 vs. 70.1%), impaired mobility (44.0 vs. 28.7%), frequent exacerbations (66.8 vs. 57.4%), frequent hospitalizations (47.5 vs. 41.6%), severe activity-related dyspnea (89.1 vs. 85.0%), symptoms of anxiety (56.3 vs. 42.0%) and depression (50.3 vs. 44.8%), and poor health status (79.9 vs. 71.0%) were more prevalent in women in tertiary care (p < 0.05). Severe inspiratory muscle weakness (14.6 vs. 8.2%) and impaired exercise capacity (69.1 vs. 59.6%) were more prevalent among men (p < 0.05) in tertiary care. Conclusions: Sex-related differences were found, with most traits more prevalent and severe among women. Care providers should be aware of these differences to adjust treatment.