scholarly journals Prevalence and severity of sleep difficulty in patients with a CNS cancer receiving palliative care in Australia

2019 ◽  
Vol 6 (6) ◽  
pp. 499-507 ◽  
Author(s):  
Megan S Jeon ◽  
Haryana M Dhillon ◽  
Joseph Descallar ◽  
Lawrence Lam ◽  
Samuel Allingham ◽  
...  

Abstract Background The literature describing the incidence of sleep difficulty in CNS cancers is very limited, with exploration of a sleep difficulty symptom trajectory particularly sparse in people with advanced disease. We aimed to establish the prevalence and longitudinal trajectory of sleep difficulty in populations with CNS cancers receiving palliative care nationally, and to identify clinically modifiable predictors of sleep difficulty. Methods A consecutive cohort of 2406 patients with CNS cancers receiving palliative care from sites participating in the Australian national Palliative Care Outcomes Collaboration were evaluated longitudinally on patient-reported sleep difficulty from point-of-care data collection, comorbid symptoms, and clinician-rated problems. Multilevel models were used to analyze patient-reported sleep difficulty. Results Reporting of mild to severe sleep difficulties ranged from 10% to 43%. Sleep scores fluctuated greatly over the course of palliative care. While improvement in patients’ clinical status was associated with less sleep difficulty, the relationship was not clear when patients deteriorated. Worsening of sleep difficulty was associated with higher psychological distress (P < .0001), greater breathing problems (P < .05) and pain (P < .05), and higher functional status (P < .001) at the beginning of care. Conclusions Sleep difficulty is prevalent but fluctuates widely in patients with CNS cancers receiving palliative care. A better-tailored sleep symptom assessment may be needed for this patient population. Early interventions targeting psychological distress, breathing symptoms, and pain for more functional patients should be explored to see whether it reduces sleep difficulties late in life.

2021 ◽  
pp. 026921632199855
Author(s):  
David C Currow ◽  
Walter Davis ◽  
Alanna Connolly ◽  
Anu Krishnan ◽  
Aaron Wong ◽  
...  

Background: Sleep, a multi-dimensional experience, is essential for optimal physical and mental wellbeing. Poor sleep is associated with worse wellbeing but data are scarce from multi-site studies on sleeping-related distress in palliative care populations. Aim: To evaluate patient-reported distress related to sleep and explore key demographic and symptom distress related to pain, breathing or fatigue. Design: Australian national, consecutive cohort study with prospectively collected point-of-care data using symptoms from the Symptom Assessment Scale (SAS). Setting/Participants: People ( n = 118,117; 475,298 phases of care) who died while being seen by specialist palliative care services ( n = 152) 2013–2019. Settings: inpatient (direct care, consultative); community (outpatient clinics, home, residential aged care). Results: Moderate/severe levels of sleeping-related distress were reported in 11.9% of assessments, more frequently by males (12.7% vs 10.9% females); people aged <50 years (16.2% vs 11.5%); and people with cancer (12.3% vs 10.0% for other diagnoses). Sleeping-related distress peaked with mid-range Australia-modified Karnofsky Performance Status scores (40–60). Strong associations existed between pain-, breathing- and fatigue-related distress in people who identified moderate/severe sleeping-related distress, adjusted for age, sex and functional status. Those reporting moderate/severe sleeping-related distress were also more likely to experience severe pain-related distress (adjusted odds ratios [OR] 6.6; 95% confidence interval (CI) 6.3, 6.9); breathing-related distress (OR 6.2; 95% CI 5.8, 6.6); and fatigue-related distress (OR 10.4; 95% CI 9.99–10.8). Conclusions: This large, representative study of palliative care patients shows high prevalence of sleeping-related distress, with strong associations shown to distress from other symptoms including pain, breathlessness and fatigue.


PLoS ONE ◽  
2021 ◽  
Vol 16 (3) ◽  
pp. e0247250
Author(s):  
Barbara A. Daveson ◽  
Samuel Frederic Allingham ◽  
Sabina Clapham ◽  
Claire E. Johnson ◽  
David C. Currow ◽  
...  

Background Very few measures are used successfully as part of routine care within national palliative care outcome programs. Only a handful of studies examine these measures. The aim of this study is to evaluate the validity of a measure used in a national outcomes program: the Palliative Care Outcomes Collaboration Symptom Assessment Scale (PCOC SAS). Methods A retrospective multi-site cohort study with secondary analysis of routinely collected patient-level data to assess PCOC SAS’s internal consistency, construct validity, reliability, interpretability, acceptability and sensitivity. The analyses used two sets, with data collected by inpatient and community palliative care services registered with the Australian national PCOC. Results Dataset one included 1,117 patients receiving palliative care from 21 services. Dataset two included 5,294 patients receiving palliative care from 119 PCOC services. PCOC SAS demonstrated the ability to detect and discriminate distress by palliative care phase, functional status and diagnosis. Excellent and good convergent and discriminant validity were demonstrated. Fair through to substantial inter-rater and intra-rater reliability levels were evidenced. Sufficient interpretability resulted along with necessary levels of acceptability and sensitivity. Conclusion PCOC SAS is a valid and reliable patient-reported outcome measure suitable for use in routine clinical care with patients requiring palliative and or end-of-life care, including in national outcomes programs.


2019 ◽  
Author(s):  
Garden Lee ◽  
Han Sang Kim ◽  
Si Won Lee ◽  
Eun Hwa Kim ◽  
Bori Lee ◽  
...  

Abstract Background: Although early palliative care is associated with a better quality of life and improved outcomes in end-of-life cancer care, the criteria of palliative care referral are still elusive. Methods: We collected patient-reported symptoms using the Edmonton Symptom Assessment System (ESAS) at the baseline, first, and second follow-up visit. The ESAS evaluates ten symptoms: pain, fatigue, nausea, depression, anxiety, drowsiness, dyspnea, sleep disorder, appetite, and wellbeing. A total of 71 patients were evaluable, with a median age of 65 years, male (62%), and the Eastern Cooperative Oncology Group (ECOG) performance status distribution of 1/2/3 (28%/39%/33%), respectively. Results: Twenty (28%) patients had moderate/severe symptom burden with the mean ESAS ≥5. Interestingly, most of the patients with moderate/severe symptom burdens (ESAS ≥5) had globally elevated symptom expression. While the mean ESAS score was maintained in patients with mild symptom burden (ESAS<5; 2.7 at the baseline; 3.4 at the first follow-up; 3.0 at the second follow-up; P =0.117), there was significant symptom improvement in patients with moderate/severe symptom burden (ESAS≥5; 6.5 at the baseline; 4.5 at the first follow-up; 3.6 at the second follow-up; P <0.001). Conclusions: Advanced cancer patients with ESAS ≥5 may benefit from outpatient palliative cancer care. Prescreening of patient-reported symptoms using ESAS can be useful for identifying unmet palliative care needs in advanced cancer patients.


2020 ◽  
pp. bmjspcare-2020-002220
Author(s):  
Lisa Barbera ◽  
Rinku Sutradhar ◽  
Craig C Earle ◽  
Doris Howell ◽  
Nicole Mittman ◽  
...  

BackgroundIn 2007, Cancer Care Ontario began standardised symptom assessment as part of routine care using the Edmonton Symptom Assessment System (ESAS).AimThe purpose of this study was to evaluate the impact of ESAS on receipt of palliative care when compared with a matched group of unexposed patients.DesignA retrospective-matched cohort study examined the impact of ESAS screening on initiation of palliative care services provided by physicians or homecare nurses. The study included adult patients diagnosed with cancer between 2007 and 2015. Exposure was defined as completing ≥1 ESAS during the study period. Using 4 hard and 14 propensity score-matched variables, patients with cancer exposed to ESAS were matched 1:1 to those who were not. Matched patients were followed from first ESAS until initiation of palliative care, death or end of study.ResultsThe final cohort consisted of 204 688 matched patients with no prior palliative care consult. The pairs were well matched. The cumulative incidence of receiving palliative care within the first 5 years was higher among those exposed to ESAS compared with those who were not (27.9% (95% CI: 27.5% to 28.2%) versus 27.9% (95% CI: 27.5% to 28.2%)), when death is considered as a competing event. In the adjusted cause-specific Cox proportional hazards model, ESAS assessment was associated with a 6% increase in palliative care services (HR: 1.06, 95% CI: 1.04 to 1.08).ConclusionWe have demonstrated that patients exposed to ESAS were more likely to receive palliative care services compared with patients who were not exposed. This observation provides real-world data of the impact of routine assessment with a patient-reported outcome.


2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 1-1 ◽  
Author(s):  
Mary E. Cooley ◽  
Traci Blonquist ◽  
Paul Catalano ◽  
David Lobach ◽  
Ilana Braun ◽  
...  

1 Background: Integration of palliative care into oncology is recommended for quality care. Clinicians may benefit from assistance in assessing and managing multiple symptoms. Palliative care clinicians have the expertise but may not be available or are not consulted early in the course of a patient’s disease. Clinical decision support (CDS) offers an innovative way to deliver symptom management and trigger palliative care referrals at the point-of-care. Methods: Twenty clinicians and their patients were randomized to usual care (UC) or CDS using the symptom assessment and management intervention (SAMI), which provided tailored suggestions for pain, fatigue, depression, anxiety and/or dyspnea. One-hundred seventy-nine patients completed a Web-based symptom assessment prior to each visit for 6 months. A tailored report provided a longitudinal symptom report and suggestions for management were provided to clinicians in the SAMI arm prior to the visit. Standardized questionnaires were administered to patients at baseline, 2, 4 and 6 months later to measure communication about symptoms and health-related quality of life (HR-QOL). The treatment outcome index (TOI) was the primary outcome for HR-QOL. Management of the target symptoms was assessed through chart review. Linear mixed models and logistic regression were used for analyses. Results: Patient characteristics were: mean age of 63 years, 58% female, 88% white, and 32% had < HS education. No differences were noted in communication between patients and their clinicians. Significant differences were noted in physical well-being (p = 0.007, 0.08 adjusted for baseline) and a clinically significant difference in the TOI (62 vs. 68) at 4 months in SAMI as compared to UC. The odds of managing depression (1.6, 90% CI, 1.0-2.5), anxiety (1.7, 90% CI, 1.0-3.0) and fatigue (1.6, 90% CI, 1.1-2.5) were higher in SAMI as compared to UC. The odds of palliative care consults for pain (3.2, 90% CI, 0.7-13.4) appear to be higher in SAMI as compared to UC. Conclusions: Enhanced HR-QOL was noted among patients in the SAMI arm at 4 months. SAMI increased management of depression, fatigue and anxiety and appeared to increase palliative care consults for pain. Clinical trial information: NCT00852462.


2019 ◽  
Author(s):  
Bárbara Pereira Antunes ◽  
Pedro Pereira Rodrigues ◽  
Irene J. Higginson ◽  
Pedro Lopes Ferreira

Abstract Background: patients with palliative needs often experience high symptom burden which causes suffering to themselves and their families. Depression and psychological distress should not be considered a “normal event” in advanced disease patients and should be screened, diagnosed, acted on and followed-up. Evidence shows that psychological distress has been associated with greater physical symptom severity, suffering, and mortality in cancer patients. A holistic, but short measure should be used for physical and non-physical needs assessment. The Integrated Palliative care Outcome Scale is one such measure. This work aims to determine palliative needs of patients and explore screening accuracy of two items pertaining to psychological needs. Methods: multi-centred observational study using convenience sampling. Data were collected in 9 Portuguese centres. Inclusion criteria: ≥18 years, mentally fit to give consent, diagnosed with an incurable, potentially life-threatening illness. Exclusion criteria: patient in distress, cognitively impaired. Descriptive statistics used for demographics. Receiving Operator Characteristics curves and Area Under the Curve for anxiety and depression discriminant properties against the Hospital Anxiety and Depression Scale. Results: 1703 individuals were screened between July 1st, 2015 and February 2016. A total of 135 (7.9%) were included. Main reason for exclusion was being healthy (75.2%). The primary care centre screened most individuals, as they have the highest rates of daily patients and the majority are healthy. Mean age is 66.8 years (SD 12.7), 58 (43%) are female. Most patients had a cancer diagnosis 109 (80.7%). Items scoring highest (=4) were: family or friends anxious or worried (36.3%); feeling anxious or worried about illness (13.3%); feeling depressed (9.6%). Using a cut-off score of 2/3, Area Under the Curve for depression and anxiety items were above 70%. Conclusions: main palliative needs were psychological, family related and spiritual. This suggests that clinical teams may better manage physical issues and there is room for improvement regarding non-physical needs. Using the Integrated Palliative care Outcome Scale systematically could aid clinical teams screening patients for distressing needs and track their progress in assisting patients and families with those issues. Trial Registration: Not applicable. This was not an intervention study.


2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 164-164
Author(s):  
Zhen Wang ◽  
Sarah Lee ◽  
Sejal Kothadia ◽  
Yucai Wang ◽  
Victor Tsu-Shih Chang ◽  
...  

164 Background: Palliative care interventions and their effect on EOL outcomes for liver cancer pts have not been described. We investigated the association between palliative care intervention and EOL care outcomes. Methods: We reviewed the charts of pts with hepatocellular carcinoma and who were seen by palliative care at 2 VA medical centers from 2006 to 2012. We investigated the association between EOL outcomes (number of ER visits, ICU visits, chemotherapy, place of death, number of hospitalizations during their last 30 days), and interventions such as early referral (within 30 days of diagnosis), defined goals of care, holding a family meeting, and symptom assessment and management. The protocol was reviewed by the IRB of both VAs and analyses were done with SAS Studio v3.4. Results: 82 charts were reviewed (30 from EOVA and 52 from BVA). All Pts were men; 30 (39%) were white and 47(61%) African American. Interval from diagnosis to palliative care consult was 68 days (median). 72 (90%) pts were not aware of their diagnosis. 48 (65%) were not aware of prognosis. 65 (88%) had decision making capacity. 32 (39%) pts were DNR/DNI. 60 (86%) pts chose symptom management and 10 (14%) life prolongation. 47 pts (50%) had family meeting. In the last month, 35 pts (48%) had ER visit. 9 pts (12%) had ICU visits, 4 pts (5%) had chemotherapy and 48 pts (71%) had at least 1 hospitalization. 68 (85%) underwent symptom assessment. Most frequently treated symptoms were pain (78%), nausea (27%), constipation (46%), dyspnea (34%). Significant associations were found for early referral and ER admissions (OR = 3.2, p = 0.0178), family meeting and site of death (OR = 0.136 p = 0.0037), family meeting and number of hospitalizations (OR = 0.2652, p = 0.0169). Pts choosing symptom management and who had family meetings associated with hospice/home as place of death (chisq = 5.7368, p = 0.016). Knowledge of prognosis was not associated with site of death. Conclusions: In this population, many palliative care interventions were performed. Early referral, family meetings were significantly associated with site of death, ER admissions, and number of hospitalizations. These results should be replicated in larger studies.


2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 10005-10005
Author(s):  
Areej El-Jawahri ◽  
Lara Traeger ◽  
Harry VanDusen ◽  
Joseph A. Greer ◽  
Vicki A. Jackson ◽  
...  

10005 Background: Patients’ experience during HCT hospitalization leads to significant psychological distress post-HCT. Inpatient palliative care integrated with transplant care improves patient-reported QOL and symptom burden during hospitalization for HCT. We assessed the impact of the inpatient palliative care intervention on patients’ QOL, mood, and post-traumatic stress disorder (PTSD) at 6 months post-HCT. Methods: We randomized 160 patients with hematologic malignancies admitted for autologous or allogeneic HCT to an inpatient palliative care intervention (n=81) integrated with transplant care compared to transplant care alone (n=79). At baseline and 6 months post-HCT, we assessed QOL, mood, and PTSD symptoms using the Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT), the Hospital Anxiety and Depression Scale (HADS) and Patient Health Questionnaire (PHQ-9), and the PTSD checklist, respectively. To assess symptom burden during HCT hospitalization, we used the Edmonton Symptom Assessment Scale. We utilized linear regression models controlling for baseline values to analyze the intervention effects on outcomes at 6 months. We conducted causal mediation analyses to examine whether symptom burden during HCT mediated the effect of the intervention on o utcomes at 6 months. Results: Between 8/14 and 1/16, we enrolled 160/186 (86%) of potentially eligible patients. At 6 months post-HCT, the intervention led to improvements in depression and PTSD symptoms, but not QOL or anxiety [Table]. Improvement in symptom burden during HCT hospitalization partially mediated the effect of the intervention on patient-reported outcomes at six months post-HCT. Conclusions: Inpatient palliative care integrated with transplant care leads to improvements in depression and PTSD symptoms at 6 months post-HCT. Addressing symptom burden during HCT hospitalization partially accounts for the effect of the intervention on these long-term outcomes. Clinical trial information: NCT02207322. [Table: see text]


2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 190-190
Author(s):  
Lauren Waldman ◽  
Richard Newcomb ◽  
Ryan David Nipp ◽  
Ephraim P. Hochberg ◽  
Vicki Jackson ◽  
...  

190 Background: Inpatient supportive care interventions are targeted to patients with advanced solid tumors due to perceived higher symptom burden. Yet, few studies have characterized symptom prevalence in hospitalized patients with curable cancers. We aimed to describe and compare symptom burden and palliative care utilization in hospitalized patients with curable and incurable cancers to determine the allocation of such supportive care resources. Methods: We conducted a single center study of 1549 patients (238 curable hematologic, 239 curable solid, 123 incurable hematologic, 949 incurable solid cancers) who experienced an unplanned hospitalization between 9/14 - 4/17. On admission, we assessed patients’ physical symptoms (Edmonton Symptom Assessment System) and psychological distress (Patient Health Questionnaire - 4 and Primary Care PTSD Screen). Results: The median number of moderate to severe symptoms reported by patients with curable hematologic, curable solid, incurable hematologic, and incurable solid cancers were 5 [3-6], 5 [3-7], 5 [4-6], and 6 [4-7], respectively. Most patients reported moderate to severe fatigue (83.6%, 82.9%, 81.3%, 86.9%). Table 1 depicts rates of psychological distress. In adjusted analyses patients with incurable solid cancers reported higher symptom burden (β = 7.6, p < 0.01), depression (β = 0.4, p = 0.01), and anxiety (β = 0.3, p = 0.03) symptoms, but no difference in PTSD symptoms. Among patients in top quartile of symptom burden, palliative care was consulted in 16.2%, 7.9%, 23.8%, and 49.6% (p < 0.01) of patients with curable hematologic, curable solid, incurable hematologic, and incurable solid cancers, respectively. Conclusions: Hospitalized patients with solid and hematologic cancers experience substantial physical and psychological symptoms regardless of the curability of their illness. Palliative care is rarely consulted for highly symptomatic patients with curable cancers. Inpatient supportive care interventions should target the needs of all highly symptomatic patients with cancer. [Table: see text]


Author(s):  
John A. Woods ◽  
Claire E. Johnson ◽  
Hanh T. Ngo ◽  
Judith M. Katzenellenbogen ◽  
Kevin Murray ◽  
...  

Symptom relief is fundamental to palliative care. Aboriginal and Torres Strait Islander (Indigenous) Australians are known to experience inequities in health care delivery and outcomes, but large-scale studies of end-of-life symptoms in this population are lacking. We compared symptom-related distress among Indigenous and non-Indigenous Australian patients in specialist palliative care using the multi-jurisdictional Palliative Care Outcomes Collaboration dataset. Based on patient-reported rating scale responses, adjusted relative risks (aRRs) stratified by care setting were calculated for occurrence of (i) symptom-related moderate-to-severe distress and worsening distress during a first episode of care and (ii) symptom-related moderate-to-severe distress at the final pre-death assessment. The p-value significance threshold was corrected for multiple comparisons. First-episode frequencies of symptom-related distress were similar among Indigenous (n = 1180) and non-Indigenous (n = 107,952) patients in both inpatient and community settings. In final pre-death assessments (681 Indigenous and 67,339 non-Indigenous patients), both groups had similar occurrence of moderate-to-severe distress when care was provided in hospital. In community settings, Indigenous compared with non-Indigenous patients had lower pre-death risks of moderate-to-severe distress from overall symptom occurrence (aRR 0.78; p = 0.001; confidence interval [CI] 0.67–0.91). These findings provide reassurance of reasonable equivalence of end-of-life outcomes for Indigenous patients who have been accepted for specialist palliative care.


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