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1.
Curr Opin Support Palliat Care ; 15(4): 199-204, 2021 12 01.
Article in English | MEDLINE | ID: covidwho-1511115

ABSTRACT

PURPOSE OF REVIEW: The purpose of this paper is (1) to provide insight in the palliative care needs of patients with COVID-19; (2) to highlight the challenges of COVID-19 for palliative care; and (3) to highlight developments in COVID-19 palliative care. RECENT FINDINGS: Patients with serious COVID-19 have palliative care needs in all domains: physical, psychological, social and spiritual. COVID-19 palliative care is confronted with many challenges, including: the uncertain prognosis, resource limitations, challenges regarding advance care planning, lack of guidance, limited multidisciplinary collaboration, need for remote communication, restrictions in family visits, and burden for clinicians. Palliative care responded with many developments: development of services; integration of palliative care with other services; tools to support advance care planning, (remote) communication with patients and families, or spiritual care; and care for team members. SUMMARY: Palliative care has an important role in this pandemic. Palliative care rapidly developed services and opportunities were found to support patients, families and clinicians. Further developments are warranted to face future demands of a pandemic, including integrated palliative care and education in palliative care skills across all specialties. Intervention studies are needed to enable evidence-based recommendations for palliative care in COVID-19.


Subject(s)
Advance Care Planning , COVID-19 , Humans , Palliative Care , Pandemics , SARS-CoV-2
2.
J Med Internet Res ; 23(9): e30274, 2021 09 21.
Article in English | MEDLINE | ID: covidwho-1430618

ABSTRACT

BACKGROUND: Fatigue is the most commonly reported symptom in patients with persistent complaints following COVID-19 (ie, long COVID). Longitudinal studies examining the intensity of fatigue and differentiating between physical and mental fatigue are lacking. OBJECTIVE: The objectives of this study were to (1) assess the severity of fatigue over time in members of online long COVID peer support groups, and (2) assess whether members of these groups experienced mental fatigue, physical fatigue, or both. METHODS: A 2-wave web-based follow-up study was conducted in members of online long COVID peer support groups with a confirmed diagnosis approximately 3 and 6 months after the onset of infectious symptoms. Demographics, COVID-19 diagnosis, received health care (from medical professionals or allied health care professionals), fatigue (Checklist Individual Strength-subscale subjective fatigue [CIS-Fatigue]; 8-56 points), and physical and mental fatigue (self-constructed questions; 3-21 points) were assessed. Higher scores indicated more severe fatigue. A CIS-Fatigue score ≥36 points was used to qualify patients as having severe fatigue. RESULTS: A total of 239 patients with polymerase chain reaction/computed tomography-confirmed COVID-19 completed the survey 10 weeks (SD 2) and 23 weeks (SD 2) after onset of infectious symptoms, respectively (T1 and T2). Of these 239 patients, 198 (82.8%) were women; 142 (59.4%) had no self-reported pre-existing comorbidities; 208 (87%) self-reported being in good health before contracting COVID-19; and 62 (25.9%) were hospitalized during acute infection. The median age was 50 years (IQR 39-56). The vast majority of patients had severe fatigue at T1 and T2 (n=204, 85.4%, and n=188, 78.7%, respectively). No significant differences were found in the prevalence of normal, mild, and severe fatigue between T1 and T2 (P=.12). The median CIS-Fatigue score was 48 points (IQR 42-53) at T1, and it decreased from T1 to T2 (median change: -2 points, IQR -7 to 3; P<.001). At T1, a median physical fatigue score of 19 points (IQR 16-20) and a median mental fatigue score of 15 points (IQR 10-17) were reported; these scores were lower at T2 for physical but not for mental fatigue (median change for physical fatigue -1 point, IQR -3 to 0, P<.001; median change for mental fatigue 0 points, IQR -3 to 3, P=.52). At the time of completing the follow-up survey, 194/239 (81.2%) and 164/239 (68.6%) of all patients had received care from at least one medical professional and one allied health care professional, respectively. CONCLUSIONS: Fatigue in members of online long COVID support groups with a confirmed COVID-19 diagnosis decreases from 10 to 23 weeks after onset of symptoms. Despite this, severe fatigue remains highly prevalent. Both physical and mental fatigue are present. It remains unclear whether and to what extent fatigue will resolve spontaneously in the longer term. TRIAL REGISTRATION: Netherlands Trial Register NTR8705; https://www.trialregister.nl/trial/8705.


Subject(s)
COVID-19 Testing , COVID-19 , COVID-19/complications , Female , Follow-Up Studies , Humans , Internet , Middle Aged , SARS-CoV-2 , Self-Help Groups
3.
J Med Internet Res ; 23(9): e30274, 2021 09 21.
Article in English | MEDLINE | ID: covidwho-1399082

ABSTRACT

BACKGROUND: Fatigue is the most commonly reported symptom in patients with persistent complaints following COVID-19 (ie, long COVID). Longitudinal studies examining the intensity of fatigue and differentiating between physical and mental fatigue are lacking. OBJECTIVE: The objectives of this study were to (1) assess the severity of fatigue over time in members of online long COVID peer support groups, and (2) assess whether members of these groups experienced mental fatigue, physical fatigue, or both. METHODS: A 2-wave web-based follow-up study was conducted in members of online long COVID peer support groups with a confirmed diagnosis approximately 3 and 6 months after the onset of infectious symptoms. Demographics, COVID-19 diagnosis, received health care (from medical professionals or allied health care professionals), fatigue (Checklist Individual Strength-subscale subjective fatigue [CIS-Fatigue]; 8-56 points), and physical and mental fatigue (self-constructed questions; 3-21 points) were assessed. Higher scores indicated more severe fatigue. A CIS-Fatigue score ≥36 points was used to qualify patients as having severe fatigue. RESULTS: A total of 239 patients with polymerase chain reaction/computed tomography-confirmed COVID-19 completed the survey 10 weeks (SD 2) and 23 weeks (SD 2) after onset of infectious symptoms, respectively (T1 and T2). Of these 239 patients, 198 (82.8%) were women; 142 (59.4%) had no self-reported pre-existing comorbidities; 208 (87%) self-reported being in good health before contracting COVID-19; and 62 (25.9%) were hospitalized during acute infection. The median age was 50 years (IQR 39-56). The vast majority of patients had severe fatigue at T1 and T2 (n=204, 85.4%, and n=188, 78.7%, respectively). No significant differences were found in the prevalence of normal, mild, and severe fatigue between T1 and T2 (P=.12). The median CIS-Fatigue score was 48 points (IQR 42-53) at T1, and it decreased from T1 to T2 (median change: -2 points, IQR -7 to 3; P<.001). At T1, a median physical fatigue score of 19 points (IQR 16-20) and a median mental fatigue score of 15 points (IQR 10-17) were reported; these scores were lower at T2 for physical but not for mental fatigue (median change for physical fatigue -1 point, IQR -3 to 0, P<.001; median change for mental fatigue 0 points, IQR -3 to 3, P=.52). At the time of completing the follow-up survey, 194/239 (81.2%) and 164/239 (68.6%) of all patients had received care from at least one medical professional and one allied health care professional, respectively. CONCLUSIONS: Fatigue in members of online long COVID support groups with a confirmed COVID-19 diagnosis decreases from 10 to 23 weeks after onset of symptoms. Despite this, severe fatigue remains highly prevalent. Both physical and mental fatigue are present. It remains unclear whether and to what extent fatigue will resolve spontaneously in the longer term. TRIAL REGISTRATION: Netherlands Trial Register NTR8705; https://www.trialregister.nl/trial/8705.


Subject(s)
COVID-19 Testing , COVID-19 , COVID-19/complications , Female , Follow-Up Studies , Humans , Internet , Middle Aged , SARS-CoV-2 , Self-Help Groups
4.
ERJ Open Res ; 7(2)2021 Apr.
Article in English | MEDLINE | ID: covidwho-1273243

ABSTRACT

BACKGROUND: It remains unknown whether and to what extent members of online "long COVID" peer support groups remain symptomatic and limited over time. Therefore, we aimed to evaluate symptoms in members of online long COVID peer support groups up to 6 months after the onset of coronavirus disease 2019 (COVID-19)-related symptoms. METHODS: Demographics, symptoms, health status, work productivity, functional status and health-related quality of life were assessed about 3 and 6 months after the onset of COVID-19-related symptoms in members of online long COVID peer support groups. RESULTS: Data from 239 patients with a confirmed COVID-19 diagnosis (83% women; median (interquartile range) age 50 (39-56) years) were analysed. During the infection, a median (interquartile range) of 15 (11-18) symptoms was reported, which was significantly lower 3 and 6 months later: 6 (4-9) and 6 (3-8), respectively (p<0.05). From 3 to 6 months follow-up, the proportion of patients without symptoms increased from 1.3% to only 5.4% (p<0.001). Patients also reported a significantly improved work productivity (work absenteeism and presenteeism: 73% versus 52% and 66% versus 60%, respectively), self-reported good health (9.2% versus 16.7%), functional status (mean±sd Post-COVID-19 Functional Status scale: 2.4±0.9 versus 2.2±1.0) and health-related quality of life (all p<0.05). CONCLUSION: Although patients with confirmed COVID-19, who were all members of online long COVID peer support groups, reported significant improvements in work productivity, functional status and quality of life between 3 and 6 months follow-up, these data clearly highlight the long-term impact of COVID-19, as approximately 6 months after the onset of COVID-19-related symptoms a large proportion still experienced persistent symptoms, a moderate-to-poor health, moderate-to-severe functional limitations, considerable loss in work productivity, and/or an impaired quality of life. Action is needed to improve the management and healthcare of these patients.

5.
Int J Environ Res Public Health ; 18(11)2021 06 03.
Article in English | MEDLINE | ID: covidwho-1259476

ABSTRACT

Background: A subgroup of patients recovering from COVID-19 experience persistent symptoms, decreased quality of life, increased dependency on others for personal care and impaired performance of activities of daily living. However, the long-term effects of COVID-19 on physical activity (PA) in this subgroup of patients with persistent symptoms remain unclear. Methods: Demographics, self-reported average time spent walking per week, as well as participation in activities pre-COVID-19 and after three and six months of follow-up were assessed in members of online long-COVID-19 peer support groups. Results: Two hundred thirty-nine patients with a confirmed COVID-19 diagnosis were included (83% women, median (IQR) age: 50 (39-56) years). Patients reported a significantly decreased weekly walking time after three months of follow-up (three months: 60 (15-120) min. vs. pre-COVID-19: 120 (60-240) min./week; p < 0.05). Six months after the onset of symptoms walking time was still significantly lower compared to pre-COVID-19 but significantly increased compared to three months of follow-up (three months: 60 (15-120) min. vs. six months: 90 (30-150) min.; p < 0.05). Conclusions: Patients who experience persistent symptoms after COVID-19 may still demonstrate a significantly decreased walking time six months after the onset of symptoms. More research is needed to investigate long-term consequences and possible treatment options to guide patients during the recovery fromCOVID-19.


Subject(s)
COVID-19 , Quality of Life , Activities of Daily Living , COVID-19/complications , COVID-19 Testing , Exercise , Female , Humans , Male , Middle Aged , SARS-CoV-2 , Self Report
6.
Health Qual Life Outcomes ; 19(1): 40, 2021 Feb 03.
Article in English | MEDLINE | ID: covidwho-1063195

ABSTRACT

BACKGROUND: An increasing number of subjects are recovering from COVID-19, raising the need for tools to adequately assess the course of the disease and its impact on functional status. We aimed to assess the construct validity of the Post-COVID-19 Functional Status (PCFS) Scale among adult subjects with confirmed and presumed COVID-19. METHODS: Adult subjects with confirmed and presumed COVID-19, who were members of an online panel and two Facebook groups for subjects with COVID-19 with persistent symptoms, completed an online survey after the onset of infection-related symptoms. The number and intensity of symptoms were evaluated with the Utrecht Symptom Diary, health-related quality of life (HrQoL) with the 5-level EQ-5D questionnaire, impairment in work and activities with the Work Productivity and Activity Impairment questionnaire and functional status with the PCFS Scale. RESULTS: 1939 subjects were included in the analyses (85% women, 95% non-hospitalized during infection) about 3 months after the onset of infection-related symptoms. Subjects classified as experiencing 'slight', 'moderate' and 'severe' functional limitations presented a gradual increase in the number/intensity of symptoms, reduction of HrQoL and impairment in work and usual activities. No differences were found regarding the number and intensity of symptoms, HrQoL and impairment in work and usual activities between subjects classified as experiencing 'negligible' and 'no' functional limitations. We found weak-to-strong statistical associations between functional status and all domains of HrQoL (r: 0.233-0.661). Notably, the strongest association found was with the 'usual activities' domain of the 5-level EQ-5D questionnaire. CONCLUSION: We demonstrated the construct validity of the PCFS Scale in highly-symptomatic adult subjects with confirmed and presumed COVID-19, 3 months after the onset of symptoms.


Subject(s)
COVID-19/physiopathology , Convalescence , Functional Status , Quality of Life , Adult , Belgium , COVID-19/psychology , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Netherlands , Reproducibility of Results , SARS-CoV-2 , Surveys and Questionnaires
7.
J Clin Med ; 9(12)2020 Dec 09.
Article in English | MEDLINE | ID: covidwho-968217

ABSTRACT

The impact of coronavirus disease 2019 (COVID-19) on quality of life appears to be highly underestimated, especially in patients who have not been admitted to the hospital. Therefore, our aim was to assess respiratory-specific quality of life in addition to generic quality of life in former patients with confirmed/suspected COVID-19 who have never been admitted to the hospital. Members of an online Belgian social support group for patients with confirmed/suspected COVID-19 with persistent complaints, completed an online survey. The five-level EQ-5D (EQ-5D-5L) and the Clinical COPD Questionnaire (CCQ) were used to assess generic and respiratory-specific quality of life, respectively. Data of 210 non-hospitalized patients (88% women, 45 ± 11 years, 79 ± 17 days after symptom onset) were included in the analyses. Mean EQ-5D index and visual analogue scale (EQ-VAS) score was 0.62 ± 0.19 and 50.71 ± 18.87, respectively, with 40% of the patients demonstrating an EQ-5D index that was below the fifth percentile of normative values, indicating poor generic quality of life. The mean CCQ score was 2.01 ± 0.98 points, while 123 respondents (59%) had a total score ≥1.9 points, indicating poor respiratory-specific quality of life. The correlation between EQ-5D index score/EQ-VAS score and CCQ total score was moderate (r = -0.524 and r = -0.374; both p < 0.001). In conclusion, both generic and respiratory-specific quality of life are affected in non-hospitalized patients with COVID-19, approximately three months after the onset of symptoms. The combined use of the EQ-5D and the CCQ could identify the broad impact of COVID-19 on quality of life.

8.
ERJ Open Res ; 6(4)2020 Oct.
Article in English | MEDLINE | ID: covidwho-825530

ABSTRACT

BACKGROUND: Many patients with COVID-19 did not require hospitalisation, nor underwent COVID-19 testing. There is anecdotal evidence that patients with "mild" COVID-19 may complain about persistent symptoms, even weeks after the infection. This suggests that symptoms during the infection may not resolve spontaneously. The objective of this study was to assess whether multiple relevant symptoms recover following the onset of symptoms in hospitalised and nonhospitalised patients with COVID-19. METHODS: A total of 2113 members of two Facebook groups for coronavirus patients with persistent complaints in the Netherlands and Belgium, and from a panel of people who registered on a website of the Lung Foundation Netherlands, were assessed for demographics, pre-existing comorbidities, health status, date of symptoms onset, COVID-19 diagnosis, healthcare utilisation, and the presence of 29 symptoms at the time of the onset of symptoms (retrospectively) and at follow-up (mean±sd 79±17 days after symptoms onset). RESULTS: Overall, 112 hospitalised patients and 2001 nonhospitalised patients (confirmed COVID-19, n=345; symptom-based COVID-19, n=882; and suspected COVID-19, n=774) were analysed. The median number of symptoms during the infection reduced significantly over time (median (interquartile range) 14 (11-17) versus 6 (4-9); p<0.001). Fatigue and dyspnoea were the most prevalent symptoms during the infection and at follow-up (fatigue: 95% versus 87%; dyspnoea: 90% versus 71%). CONCLUSION: In previously hospitalised and nonhospitalised patients with confirmed or suspected COVID-19, multiple symptoms are present about 3 months after symptoms onset. This suggests the presence of a "post-COVID-19 syndrome" and highlights the unmet healthcare needs in a subgroup of patients with "mild" or "severe" COVID-19.

9.
Int J Nurs Stud ; 113: 103781, 2021 Jan.
Article in English | MEDLINE | ID: covidwho-808702

ABSTRACT

BACKGROUND: The acute nature of COVID-19 and its effects on society in terms of social distancing and quarantine regulations affect the provision of palliative care for people with dementia who live in long-term care facilities. The current COVID-19 pandemic poses a challenge to nursing staff, who are in a key position to provide high-quality palliative care for people with dementia and their families. OBJECTIVE: To formulate practice recommendations for nursing staff with regard to providing palliative dementia care in times of COVID-19. DESIGN AND METHOD: A rapid scoping review following guidelines from the Joanna Briggs Institute. Eligible papers focused on COVID-19 in combination with palliative care for older people or people with dementia and informed practical nursing recommendations for long-term care facilities. After data extraction, we formulated recommendations covering essential domains in palliative care adapted from the National Consensus Project's Clinical Practice Guidelines for Quality Palliative Care. DATA SOURCES: We searched the bibliographic databases of PubMed, CINAHL and PsycINFO for academic publications. We searched for grey literature using the search engine Google. Moreover, we included relevant letters and editorials, guidelines, web articles and policy papers published by knowledge and professional institutes or associations in dementia and palliative care. RESULTS: In total, 23 documents (7 (special) articles in peer-reviewed journals, 6 guides, 4 letters to editors, 2 web articles (blogs), 2 reports, a correspondence paper and a position paper) were included. The highest number of papers informed recommendations under the domains 'advance care planning' and 'psychological aspects of care'. The lowest number of papers informed the domains 'ethical care', 'care of the dying', 'spiritual care' and 'bereavement care'. We found no papers that informed the 'cultural aspects of care' domain. CONCLUSION: Literature that focuses specifically on palliative care for people with dementia in long-term care facilities during the COVID-19 pandemic is still largely lacking. Particular challenges that need addressing involve care of the dying and the bereaved, and ethical, cultural and spiritual aspects of care. Moreover, we must acknowledge grief and moral distress among nursing staff. Nursing leadership is needed to safeguard the quality of care and nursing staff should work together within an interprofessional care team to initiate advance care planning conversations in a timely manner, to review and document advance care plans, and to adapt goals of care as they may change due to the COVID-19 situation. Tweetable abstract: The current COVID-19 pandemic affects people living with dementia, their families and their professional caregivers. This rapid scoping review searched for academic and grey literature to formulate practical recommendations for nursing staff working in long-term care facilities on how to provide palliative care for people with dementia in times of COVID-19. There is a particular need for grief and bereavement support and we must acknowledge grief and moral distress among nursing staff. This review exposes practice and knowledge gaps in the response to COVID-19 that reflect the longstanding neglect and weaknesses of palliative care in the long-term care sector. Nursing leadership is needed to safeguard the quality of palliative care, interprofessional collaboration and peer support among nursing staff.


Subject(s)
COVID-19/epidemiology , Dementia/nursing , Nursing Homes/organization & administration , Nursing, Practical , Palliative Care/organization & administration , Aged , COVID-19/virology , Humans , Long-Term Care , SARS-CoV-2/isolation & purification
10.
Journal of Clinical Medicine ; 9(9):2946, 2020.
Article | MDPI | ID: covidwho-762877

ABSTRACT

Background: A large sample of "mild"COVID-19 patients still experience multiple symptoms months after being infected. These persistent symptoms are associated with many clinically relevant outcomes, including poor health status and impaired functional status. To date, no information is available about care dependency. Therefore, we aimed to explore the level of care dependency and the need for assistance with personal care in non-hospitalized COVID-19 patients. Methods: Members of two Facebook groups for COVID-19 patients with persistent complaints in The Netherlands and Belgium, and from a panel of people who registered at a website of the Lung Foundation Netherlands, were assessed for demographics, pre-existing comorbidities, health status, and symptoms. In addition, patients were asked about their dependence on others for personal care before and after the infection. The level of care dependency was assessed with the Care Dependency Scale (CDS) in members of the Belgian Facebook group (n = 210). Results: The data of 1837 non-hospitalized patients (86% women;median (IQR) age: 47 (38-54)) were analyzed. Only a small proportion of patients needed help with personal care before COVID-19, but the care need increased significantly after the infection (on average 79 ±17 days after the onset of symptoms;7.7% versus 52.4%, respectively;p <0.05). The patients had a median (IQR) CDS score of 72 (67-75) points, and 31% of the patients were considered as care-dependent (CDS score ≤68 points). Conclusions: COVID-19 has an important impact on care dependency in non-hospitalized patients. About three months after the onset of symptoms, a considerable proportion of non-hospitalized patients were to some degree dependent on others for personal care. This indicates that the impact of COVID-19 on patients"daily lives is tremendous, and more attention is needed to identify optimal treatment strategies to restore patients"independency.

13.
Eur Respir J ; 56(3)2020 09.
Article in English | MEDLINE | ID: covidwho-649439

ABSTRACT

BACKGROUND: Many people are dying from coronavirus disease 2019 (COVID-19), but consensus guidance on palliative care in COVID-19 is lacking. This new life-threatening disease has put healthcare systems under pressure, with the increased need of palliative care provided to many patients by clinicians who have limited prior experience in this field. Therefore, we aimed to make consensus recommendations for palliative care for patients with COVID-19 using the Convergence of Opinion on Recommendations and Evidence (CORE) process. METHODS: We invited 90 international experts to complete an online survey including stating their agreement, or not, with 14 potential recommendations. At least 70% agreement on directionality was needed to provide consensus recommendations. If consensus was not achieved on the first round, a second round was conducted. RESULTS: 68 (75.6%) experts responded in the first round. Most participants were experts in palliative care, respiratory medicine or critical care medicine. In the first round, consensus was achieved on 13 recommendations based upon indirect evidence and clinical experience. In the second round, 58 (85.3%) out of 68 of the first-round experts responded, resulting in consensus for the 14th recommendation. CONCLUSION: This multi-national task force provides consensus recommendations for palliative care for patients with COVID-19 concerning: advance care planning; (pharmacological) palliative treatment of breathlessness; clinician-patient communication; remote clinician-family communication; palliative care involvement in patients with serious COVID-19; spiritual care; psychosocial care; and bereavement care. Future studies are needed to generate empirical evidence for these recommendations.


Subject(s)
Advance Care Planning/organization & administration , Coronavirus Infections , Palliative Care , Pandemics , Pneumonia, Viral , Psychosocial Support Systems , Respiratory Therapy/methods , Advisory Committees , Betacoronavirus/isolation & purification , COVID-19 , Consensus , Coronavirus Infections/diagnosis , Coronavirus Infections/epidemiology , Coronavirus Infections/psychology , Coronavirus Infections/therapy , Europe , Humans , Palliative Care/methods , Palliative Care/organization & administration , Pneumonia, Viral/diagnosis , Pneumonia, Viral/epidemiology , Pneumonia, Viral/psychology , Pneumonia, Viral/therapy , SARS-CoV-2 , Severity of Illness Index
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