Prevalence of dyspnea in general adult populations: A systematic review and meta-analysis.

INTRODUCTION: Dyspnea is a commonly described symptom in various chronic and acute conditions. Despite its frequency, relatively little is known about the prevalence and assessment of dyspnea in general populations. The aims of this review were: 1) to estimate the prevalence of dyspnea in general adult populations; 2) to identify associated factors; and 3) to identify used methods for dyspnea assessment. METHODS: A systematic literature search was conducted using MEDLINE/PubMed, Embase, CINAHL and JAMA network. Records were screened by two independent reviewers and quality was assessed by using the Joanna Briggs Institute checklist for risk of bias in prevalence studies. Multi-level meta-analysis was performed to estimate pooled prevalence. The protocol was registered on PROSPERO (CRD42021275499). RESULTS: Twenty original articles, all from studies in high-income countries, met the criteria for inclusion. Overall, their quality was good. Pooled prevalence of dyspnea in general adult populations based on 11 studies was 10% (95% CI 7, 15), but heterogeneity across studies was high. The most frequently reported risk factors were increasing age, female sex, higher BMI and respiratory or cardiac disease. The MRC or the modified MRC scale was the most used tool to assess dyspnea in general populations. CONCLUSIONS: Dyspnea is a common symptom in adults in high-income countries. However, the high heterogeneity across studies and the lack of data from low- and middle-income countries limit the generalizability of our findings. Therefore, more research is needed to unveil the prevalence of dyspnea and its main risk factors in general populations around the world.

The Impact of Long COVID-19 on Mental Health: Observational 6-Month Follow-Up Study.

BACKGROUND: The psychological impact of COVID-19 can be substantial. However, knowledge about long-term psychological outcomes in patients with COVID-19 is scarce. OBJECTIVE: In this longitudinal, observational study, we aimed to reveal symptoms of posttraumatic stress disorder (PTSD) and symptoms of anxiety and depression up to 6 months after the onset of COVID-19-related symptoms in patients with confirmed COVID-19 and persistent complaints. To demonstrate the impact in nonhospitalized patients, we further aimed to compare these outcomes between nonhospitalized and hospitalized patients. METHODS: Demographics, symptoms of PTSD (Trauma Screening Questionnaire [TSQ] ≥6 points) and symptoms of anxiety and depression (Hospital Anxiety and Depression Scale [HADS] ≥8 points) were assessed at 3 and 6 months after the onset of COVID-19-related symptoms in members of online long COVID-19 peer support groups. RESULTS: Data from 239 patients with confirmed COVID-19 (198/239, 82.8% female; median age: 50 [IQR 39-56] years) were analyzed. At the 3-month follow-up, 37.2% (89/239) of the patients had symptoms of PTSD, 35.6% (85/239) had symptoms of anxiety, and 46.9% (112/239) had symptoms of depression, which remained high at the 6-month follow-up (64/239, 26.8%, P=.001; 83/239, 34.7%, P=.90; 97/239, 40.6%, P=.08, respectively; versus the 3-month follow-up). TSQ scores and HADS anxiety and depression scores were strongly correlated at the 3- and 6-month follow-ups (r=0.63-0.71, P<.001). Symptoms of PTSD, anxiety, and depression were comparable between hospitalized (n=62) and nonhospitalized (n=177) patients. CONCLUSIONS: A substantial percentage of patients with confirmed COVID-19 and persistent complaints reported symptoms of PTSD, anxiety, or depression 3 and 6 months after the onset of COVID-19-related symptoms. The prevalence rates of symptoms of PTSD, anxiety, and depression were comparable between hospitalized and nonhospitalized patients and merely improved over time. Health care professionals need to be aware of these psychological complications and intervene on time in post-COVID-19 patients with persistent complaints. TRIAL REGISTRATION: Netherlands Trial Register NTR8705; https://www.trialregister.nl/trial/8705.

Understanding and Being Understood: Information and Care Needs of 2113 Patients With Confirmed or Suspected COVID-19.

To become a proactive and informed partner in postacute coronavirus disease 2019 (COVID-19) management, patients need to have the knowledge, skills, and confidence to self-manage COVID-19-related health challenges. Due to several restrictions and consequently social isolation, online platforms and forums where people can share information and experiences became more popular and influential. Therefore, this study aimed to identify perceived information needs and care needs of members of 2 Facebook groups for patients with COVID-19 and persistent complaints in the Netherlands and Belgium and patients with COVID-19 who registered at a website of the Lung Foundation Netherlands. Besides demographics and clinical characteristics, the degree of satisfaction with care during and after the infection as well as satisfaction with available information were assessed. Open text fields revealed specific information needs which were summarized. Patients with confirmed or suspected COVID-19 perceive various unmet needs varying from specific information needs (eg, information about permanent lung damage) to general needs (eg, being heard and understood). These data lead to several recommendations to improve care for patients with COVID-19 and justify further development of online platforms specifically addressing these unmet needs.

Tools to help healthcare professionals recognize palliative care needs in patients with advanced heart failure: A systematic review.

BACKGROUND: The delivery of palliative care interventions is not widely integrated in chronic heart failure care as the recognition of palliative care needs is perceived as difficult. Tools may facilitate healthcare professionals to identify patients with palliative care needs in advanced chronic heart failure. AIM: To identify tools to help healthcare professionals recognize palliative care needs in patients with advanced chronic heart failure. DESIGN: This systematic review was registered in the PROSPERO database (CRD42019131896). Evidence of tools' development, evaluation, feasibility, and implementation was sought and described. DATA SOURCES: Electronic searches to identify references of tools published until June 2019 were conducted in MEDLINE, CINAHL, and EMBASE. Hand-searching of references and citations was undertaken. Based on the identified tools, a second electronic search until September 2019 was performed to check whether all evidence about these tools in the context of chronic heart failure was included. RESULTS: Nineteen studies described a total of seven tools. The tools varied in purpose, intended user and properties. The tools have been validated to a limited extent in the context of chronic heart failure and palliative care. Different health care professionals applied the tools in various settings at different moments of the care process. Guidance and instruction about how to apply the tool revealed to be relevant but may be not enough for uptake. Spiritual care needs were perceived as difficult to assess. CONCLUSION: Seven tools were identified which showed different and limited levels of validity in the context of palliative care and chronic heart failure.

Effectiveness and implementation of palliative care interventions for patients with chronic obstructive pulmonary disease: A systematic review.

BACKGROUND: Although guidelines recommend palliative care for patients with chronic obstructive pulmonary disease, there is little evidence for the effectiveness of palliative care interventions for this patient group specifically. AIM: To describe the characteristics of palliative care interventions for patients with COPD and their informal caregivers and review the available evidence on effectiveness and implementation outcomes. DESIGN: Systematic review and narrative synthesis (PROSPERO CRD42017079962). DATA SOURCES: Seven databases were searched for articles reporting on multi-component palliative care interventions for study populations containing ⩾30% patients with COPD. Quantitative as well as qualitative and mixed-method studies were included. Intervention characteristics, effect outcomes, implementation outcomes and barriers and facilitators for successful implementation were extracted and synthesized qualitatively. RESULTS: Thirty-one articles reporting on twenty unique interventions were included. Only four interventions (20%) were evaluated in an adequately powered controlled trial. Most interventions comprised of longitudinal palliative care, including care coordination and comprehensive needs assessments. Results on effectiveness were mixed and inconclusive. The feasibility level varied and was context-dependent. Acceptability of the interventions was high; having someone to call for support and education about breathlessness were most valued characteristics. Most frequently named barriers were uncertainty about the timing of referral due to the unpredictable disease trajectory (referrers), time availability (providers) and accessibility (patients). CONCLUSION: Little high-quality evidence is yet available on the effectiveness and implementation of palliative care interventions for patients with COPD. There is a need for well-conducted effectiveness studies and adequate process evaluations using standardized methodologies to create higher-level evidence and inform successful implementation.

Characteristics for a tool for timely identification of palliative needs in heart failure: The views of Dutch patients, their families and healthcare professionals.

BACKGROUND: Palliative care can improve outcomes for patients with advanced chronic heart failure and their families, but timely recognition of palliative care needs remains challenging. AIM: The aim of this study was to identify characteristics of a tool to assess palliative care needs in chronic heart failure that are needed for successful implementation, according to patients, their family and healthcare professionals in The Netherlands. METHODS: Explorative qualitative study, part of the project 'Identification of patients with HeARt failure with PC needs' (I-HARP), focus groups and individual interviews were held with healthcare professionals, patients with chronic heart failure, and family members. Data were analysed using the Consolidated Framework for Implementation Research. RESULTS: A total of 13 patients, 10 family members and 26 healthcare professionals participated. Direct-content analysis revealed desired tool characteristics for successful implementation in four constructs: relative advantage, adaptability, complexity, and design quality and packaging. Healthcare professionals indicated that a tool should increase awareness, understanding and knowledge concerning palliative care needs. A tool needs to: be adaptable to different disease stages, facilitate early identification of palliative care needs and ease open conversations about palliative care. The complexity of chronic heart failure should be considered in a personalized approach. CONCLUSIONS: The current study revealed the characteristics of a tool for timely identification of palliative care needs in chronic heart failure needed for successful implementation. The next steps will be to define the content of the tool, followed by development of a preliminary version and iterative testing of this version by the different stakeholders.

Timely recognition of palliative care needs of patients with advanced chronic heart failure: a pilot study of a Dutch translation of the Needs Assessment Tool: Progressive Disease - Heart Failure (NAT:PD-HF).

BACKGROUND: The Needs Assessment Tool: Progressive Disease - Heart Failure (NAT:PD-HF) was developed to identify and triage palliative care needs in patients with chronic heart failure. A Dutch version is currently lacking. AIMS: The aim of this study was to investigate the feasibility and acceptability of a Dutch NAT:PD-HF in chronic heart failure outpatients; and to gain preliminary data regarding the effect of the NAT:PD-HF on palliative care referral, symptoms, health status, care dependency, caregiver burden and advance directives. METHODS: A mixed methods study including 23 outpatients with advanced chronic heart failure and 20 family caregivers was performed. Nurses conducted patient consultations using a Dutch translation of the NAT:PD-HF and rated acceptability. Before this visit and 4 months later, symptoms, health status, performance status, care dependency, caregiver burden and recorded advance directives were assessed. A focus group with participating nurses discussed barriers and facilitators towards palliative care needs assessment. RESULTS: Acceptability was rated as 7 (interquartile range 6-7 points) on a 10-point scale. All patients had palliative care needs. In 48% actions were taken, including two patients referred to palliative care. Symptoms, performance status, care dependency, caregiver burden and advance directives were unchanged at 4 months, while health status deteriorated in patients completing follow-up ( n=17). Barriers towards palliative care needs assessment included feeling uncomfortable to initiate discussions and concerns about the ability to address palliative care needs. CONCLUSIONS: The NAT:PD-HF identified palliative care needs in all participants, and triggered action to address these in half. However, training in palliative care communication skills as well as palliative care interventions should accompany the introduction of a palliative care needs assessment tool. NETHERLANDS NATIONAL TRIAL REGISTER (NTR): 5616. http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=5616.

The patient with a complex chronic respiratory disease: a specialist of his own life?

INTRODUCTION: The independent and central role of the patient with a complex chronic respiratory disease in targeted, personalized disease management strategies is becoming increasingly important. Patients are the ones living with the disease and are finally responsible for their lives underlining their role as essential members of the interdisciplinary treatment team. Areas covered: The present paper narratively reviews existing research and discusses the special, as well as specialized, role of the patient with a complex chronic respiratory disease in the healthcare system and highlights fundamental elements of the (future) relationship between patient and healthcare professionals. Expert commentary: Since the chronic respiratory disease at hand is part of the patient's entire life, we need holistic, personalized approaches optimizing patients' quality of life by not only treating the disease but considering the patients' whole environment and where healthcare professionals and patients are co-creating value care.

Gender differences in partners of patients with COPD and their perceptions about the patients.

BACKGROUND/OBJECTIVES: Chronic obstructive pulmonary disease (COPD) not only affects patients but also their partners. Gender-related differences in patients with COPD are known, for instance regarding symptoms and quality of life. Yet, research regarding gender differences in partners of patients with COPD has been conducted to a lesser extent, and most research focused on female partners. We aimed to investigate differences between male and female partners of patients with COPD regarding their own characteristics and their perceptions of patients' characteristics. DESIGN: Cross-sectional study. SETTING: Four hospitals in the Netherlands. PARTICIPANTS: One hundred and eighty-eight patient-partner couples were included in this cross-sectional study. MEASUREMENTS: General and clinical characteristics, health status, care dependency, symptoms of anxiety and depression, social support, caregiver burden, and coping styles were assessed during a home visit. RESULTS: Female partners had more symptoms of anxiety and a worse health status than male partners. Social support and caregiver burden were comparable, but coping styles differed between male and female partners. Female partners thought that male patients were less care dependent and had more symptoms of depression, while these gender differences did not exist in patients themselves. CONCLUSION: Health care providers should pay attention to the needs of all partners of patients with COPD, but female partners in particular. Obtaining an extensive overview of the patient-partner couple, including coping styles, health status, symptoms of anxiety, and caregiver burden, is necessary to be able to support the couple as effectively as possible.

Domain-specific cognitive impairment in patients with COPD and control subjects.

Impaired cognitive function is increasingly recognized in COPD. Yet, the prevalence of cognitive impairment in specific cognitive domains in COPD has been poorly studied. The aim of this cross-sectional observational study was to compare the prevalence of domain-specific cognitive impairment between patients with COPD and non-COPD controls. A neuropsychological assessment was administered in 90 stable COPD patients and 90 non-COPD controls with comparable smoking status, age, and level of education. Six core tests from the Maastricht Aging Study were used to assess general cognitive impairment. By using Z-scores, compound scores were constructed for the following domains: psychomotor speed, planning, working memory, verbal memory, and cognitive flexibility. General cognitive impairment and domain-specific cognitive impairment were compared between COPD patients and controls after correction for comorbidities using multivariate linear and logistic regression models. General cognitive impairment was found in 56.7% of patients with COPD and in 13.3% of controls. Deficits in the following domains were more often present in patients with COPD after correction for comorbidities: psychomotor speed (17.8% vs 3.3%; P<0.001), planning (17.8% vs 1.1%; P<0.001), and cognitive flexibility (43.3% vs 12.2%; P<0.001). General cognitive impairment and impairments in the domains psychomotor speed, planning, and cognitive flexibility affect the COPD patients more than their matched controls.

Measurement properties of the Timed Up & Go test in patients with COPD.

We aimed to investigate the construct validity of the Timed Up & Go (TUG) test in chronic obstructive pulmonary disease (COPD), to identify characteristics related to an abnormal TUG time and to examine the responsiveness of the TUG to pulmonary rehabilitation (PR). TUG time was assessed before and after comprehensive PR in 500 COPD patients, and compared cross-sectionally in 100 non-COPD subjects. Physical health outcomes, mental health outcomes, symptom-related outcomes and multidimensional indices were assessed in COPD patients only. Good convergent and discriminant validity was demonstrated by fair-to-moderate correlation with physical health outcomes, symptom-related outcomes and multidimensional indices ( rs = 0.18-0.70) and by little correlation with mental health outcomes ( rs = 0.21-0.26). COPD patients had a worse TUG time than non-COPD subjects, demonstrating known-groups validity. A TUG time of 11.2 seconds had good sensitivity (0.75) and specificity (0.83) for identifying patients with a baseline 6-minute walk distance <350 m. TUG time improved after PR ( p < 0.0001) and a change of 0.9-1.4 seconds was identified as clinically important. The TUG is valid and responsive in COPD. An abnormal result is indicative of poor health outcomes. This simple test provides valuable information and can be adopted in clinical and research settings.

Barriers and facilitators to end-of-life communication in advanced chronic organ failure.

AIM: The aim of this quantitative, cross-sectional study was to identify barriers and facilitators to end-of-life communication experienced by family caregivers of patients with advanced chronic organ failure and to examine agreement in barriers and facilitators between family caregivers and patients. METHODS: Patients and family caregivers were interviewed using the barriers and facilitators questionnaire. Agreement was determined using intraclass correlation coefficients for continuous variables and Cohen's kappa for categorical variables. RESULTS: A total of 158 patients and family caregiver dyads were included. The most important barriers for family caregivers were related to uncertainty about expected care and focus on staying alive instead of dying. The facilitators were related to trust in and competence of their physician and earlier experiences with death in their (social) environment. For most barriers and facilitators, agreement between patients and family caregivers was fair to moderate. CONCLUSION: Differences in barriers and facilitators between patients and family caregivers ask for an individual approach to facilitate end-of-life communication.

End-of-life care in a COPD patient awaiting lung transplantation: a case report.

COPD is nowadays the main indication for lung transplantation. In appropriately selected patients with end stage COPD, lung transplantation may improve quality of life and prognosis of survival. However, patients with end stage COPD may die while waiting for lung transplantation. Palliative care is important to address the needs of patients with end stage COPD. This case report shows that in a patient with end stage COPD listed for lung transplantation offering palliative care and curative-restorative care concurrently may be problematic. If the requirements to remain a transplantation candidate need to be met, the possibilities for palliative care may be limited. Discussing the possibilities of palliative care and the patient's treatment preferences is necessary to prevent that end-of-life care needs of COPD patients dying while listed for lung transplantation are not optimally addressed. The patient's end-of-life care preferences may ask for a clear distinction between the period in which palliative and curative-restorative care are offered concurrently and the end-of-life care period. This may be necessary to allow a patient to spend the last stage of life according to his or her wishes, even when this implicates that lung transplantation is not possible anymore and the patient will die because of end stage COPD.