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With over two million deaths and almost 100 million confirmed cases, the COVID-19 pandemic has caused a “tsunami of suffering.” Health care workers, including palliative care workers, have been severely impacted. This study explores how the COVID-19 pandemic has impacted palliative care workers around the world and describes the coping strategies they have adopted to face their specific situation.
We conducted a qualitative analysis of written, unstructured comments provided by respondents to a survey of IAHPC members between May and June 2020. Free text was exported to MAX QDA, and a thematic analysis was performed by reading the comments and developing a coding frame.
Seventy-seven palliative care workers from 41 countries submitted at least one written comment, resulting in a data corpus of 10,694 words and a total of 374 coded comments. Eight main themes are emerged from the analysis: palliative care development, workforce impact, work reorganization, palliative care reconceptualization, economic and financial impacts, increased risk, emotional impact, and coping strategies.
Significance of results
The pandemic has had a huge impact on palliative care workers including their ability to work and their financial status. It has generated increased workloads and placed them in vulnerable positions that affect their emotional well-being, resulting in distress and burnout. Counseling and support networks provide important resilience-building buffers. Coping strategies such as team and family support are important factors in workers’ capacity to adapt and respond. The pandemic is changing the concept and praxis of palliative care. Government officials, academia, providers, and affected populations need to work together to develop, and implement steps to ensure palliative care integration into response preparedness plans so as not to leave anyone behind, including health workers.
The objective of this study was to assess the psychosocial distress and associated factors in advanced cancer patients consulting at the outpatient Palliative Care Unit at the National Cancer Institute in Mexico City.
A retrospective study was conducted using electronic records (June 2015 to December 2016).
A total of 646 patients with advanced cancer during their first visit to the outpatient palliative care unit at the National Cancer Institute in Mexico were evaluated using the Distress Thermometer (DT) and ECOG performance status scores.
Overall, 62% were women, with a median age of 57 years, and married (54.8%). The most frequent diagnosis was gastrointestinal cancer (28.6%), and 38.9% had a functional performance status of ECOG 2. The median DT score was 4.0 (IQR = 2–6), with 56% reporting DT scores ≥4. The three most frequent problems ≥4 were sadness (82.6%), feeling weak (81.2%), worry (79.6%), and <4 were feeling weak (57.7%), fatigue (55.6%), and financial security (52.1%). The variables associated with distress according to the multiple logistic regression analysis were problems with housing (OR = 2.661, 95% CI = 1.538–4.602), sadness (OR = 2.533, 95% CI = 1.615–3.973), transportation (OR = 1.732, 95% CI = 1.157–2.591), eating (OR = 1.626, 95% CI = 1.093–2.417), nervousness (OR = 1.547, 95% CI = 1.014–2.360), and sleep (OR = 1.469, 95% CI = 1.980–2.203).
The principal factors were related to distress levels, housing problems, transportation issues, and emotional problems such as sadness, nervousness, lower functionality, and younger age. Therefore, psychosocial support is of considerable relevance in palliative care. These findings will help clinicians understand the distress of patients with advanced cancer in palliative care in Latin American countries.
Our aim was to examine the accuracy of the German version of the Distress Thermometer (DT) compared with the Hospital Anxiety and Depression Scale (HADS) in patients with palliative care needs living at home.
Ours was a 15-month cross-sectional study beginning in September of 2013 in Germany with consecutive patients cared for by a palliative home care service. The survey was implemented during the initial visit by a home care team. Patients were excluded if they were under 18 years of age, mentally or physically unable to complete the assessment questionnaires as judged by their healthcare worker, or unable to understand the German language. During the first encounter, the DT and HADS were applied, and sociodemographic and medical data were collected.
A total of 89 persons completed both the HADS and DT questionnaires (response rate = 59.7%; mean age = 67 years; female = 55.1%; married = 65.2%; living home with relatives = 73.0%; oncological condition = 92.1%; Karnofsky Performance Scale [KPS] score: 0–40 = 30.3%, 50–70 = 57.3%, >80 = 6.7%). The mean DT score was 6.3 (±2.3), with 84.3% of participants scoring above the DT cutoff (≥4). The mean HADStotal score was 17.9 (±7.8), where 64% of participants had a total HADS score (HADStotal) ≥15, 51.7% reported anxiety (HADSanxiety ≥ 8), and 73% reported depression (HADSdepression ≥ 8). Using the HADS as a gold standard, a DT cutoff score ≥5 was optimal for identifying severe distress in patients with palliative care needs, with a sensitivity of 93.0%, a specificity of 34.4%, a positive predictive value (PPV) of 73.3%, and likelihood ratios LR+ = 1.42 (<3) and –LR = 0.203 (<0.3).
Significance of results:
The DT performed satisfactorily compared to the HADS in screening for distress in our study and can be employed as an instrument for identification of patients with distress. Consequent to the high prevalence of distress, we recommend its routine use for screening distressed persons at home with palliative care needs in order to offer adequate support.
The aims of the present study were (1) to describe the prevalence of psychosocial distress in palliative care patients living at home and the related factors, and (2) to test implementation of the Distress Thermometer (DT) within a home-based palliative care service.
Ours was a 15-month prospective study beginning in September of 2013 in western Germany with consecutive patients cared for by a home care palliative care service. The research was implemented during the first visit by the home care team. Patients were excluded if they were under 18 years of age, mentally or physically unable to complete the assessment questionnaires as judged by their healthcare worker, or unable to understand the German language. During the first encounter, the Distress Thermometer (DT), a Problem List (PL), and a structured questionnaire for evaluation were applied and sociodemographic and medical data collected.
A total of 103 patients (response rate = 70%; mean age = 67; female = 54%; married = 67%; oncological condition = 91%; Karnofsky Performance Status [KPS] score 0–40 = 34%, 50–70 = 60%, >80 = 6%) were included. The incidence of distress (DT score ≥4) was 89.3% (mean = 6.3 ± 2.5). No statistical association was found between level of distress and sociodemographic or medical factors. The five most reported problems were “fatigue” (90%), “getting around” (84%), “eating” (63%), “bathing/dressing” (60%), and “sleep” (57%). The number of problems reported correlated with level of distress (ρ = 0.34). The DT was comprehensible, and 80% considered its completion as unremarkable, while 14% found it “relieving.”
Significance of results:
A significant proportion of patients treated at home reported symptoms of distress. The most oft-mentioned problems were physical and emotional in nature. The findings of our study highlight the importance of creating new concepts and structures in order to address the psychosocial needs of patients in home care with palliative needs.
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