PURPOSE: We designed a novel, manualized intervention called Emotion And Symptom-focused Engagement (EASE) for acute leukemia (AL) and report here on a phase II randomized controlled trial (RCT) to assess its feasibility and preliminary efficacy.
METHODS: Patients were recruited within 1 month of hospital admission and randomized to EASE plus usual care (UC) or UC alone. EASE includes (1) EASE-psy, a tailored psychotherapy delivered over 8 weeks, and (2) EASE-phys, weekly physical symptom screening over 8 weeks to trigger early palliative care. The primary outcome was traumatic stress symptoms; secondary outcomes included physical symptom burden and quality of life. Assessments were conducted at baseline and at 4, 8, and 12 weeks. Between-group differences were evaluated using multilevel modeling.
RESULTS: Forty-two patients were randomized to EASE (n = 22) or UC (n = 20), with 76% retention at 12 weeks. Predefined feasibility outcomes were met: 86% (19/22) of EASE participants completed = 50% of EASE-psy sessions (goal = 64%); 100% received Edmonton Symptom Assessment System (ESAS, modified for AL) screenings, 64% (14/22) of whom completed = 50% of planned screenings (goal =50%); and 100% with scores = 4/10 on any physical ESAS-AL item had = 1 meeting with the EASE-phys team (goal 100%). Significant treatment-group differences favoring EASE were observed in traumatic stress symptoms at 4 and 12 weeks, and pain intensity and interference at 12 weeks (all p < .05).
CONCLUSIONS: EASE is feasible in patients newly diagnosed with AL and shows promise of effectiveness. These results warrant a larger RCT to provide evidence for its more routine use as a standard of care.
Disparities in access to palliative care services for populations with social disparities have been reported in Western countries. Studies indicate that these populations tend to report higher symptom distress than other population groups. We need to further investigate how social disparities influence symptom burden to improve symptom relief in these populations.
PURPOSE: To examine the perspectives of specialist palliative care providers concerning the relationship between social disparities and symptom burden in populations with advanced cancer.
METHODS: Two sequential qualitative studies that followed a combination of interpretive and critical methodologies. The interpretive approach was outlined by van Manen's hermeneutic phenomenology while the critical component was informed by the works of Paulo Freire. Participants involved two specialist palliative care teams from a large acute care hospital and a large cancer center in Western Canada. Participants included 11 palliative care providers including registered nurses, nurse practitioners, physicians, and pharmacists.
RESULTS: Participants perceived that social conditions that might aggravate symptom burden included low income, low education, lack of social support, language barriers, and rurality. The relationship between income and symptom burden reflected diverse views. Participants identified populations prone to complex symptom burden including homeless individuals, Indigenous people, people with a history of addictions, and people with mental health or psychosocial issues.
CONCLUSION: Participants perceived that social disparities may increase symptom complexity in populations with advanced cancer. Participants did not identify ethnicity and gender as influencing symptom burden. Further research is needed to examine the interactions of social disparities, patient individuality, and symptom burden.
BACKGROUND: Although chronic obstructive pulmonary disease (COPD) is a life-limiting disease with a significant symptom burden, the patients are more often referred to nursing homes (NH), than to specialist palliative care (SPC) at the end of life (EOL). This study aimed to compare patients with COPD in SPC with those in NH and to compare the care provided.
METHODS: A national register study was carried out where the Swedish National Airway Register and the Swedish Register of Palliative Care were merged. COPD patients who died in NHs or short-term facilities were included in the NH group (n = 415) and those who died in SPC were included in the SPC group (n = 355). Demographic and clinical variables were included from the Swedish National Airway Register and variables concerning EOL care from the Swedish Register of Palliative Care.
RESULTS: Symptom prevalence was similar in NHs and SPC, but symptom assessment (32% vs 20%), symptom relief medication (93-98% in SPC vs 74-90% in NH), EOL discussions (88% vs 66%), and bereavement support (94% vs 67%) were more likely in SPC (in all comparisons p < 0.001). Younger age and co-habiting increased the probability of dying in SPC (p < 0.001).
CONCLUSION: Despite similar symptom prevalence, older persons are more likely to be referred to NHs. If applying a palliative care philosophy in NHs, routine symptom assessment and prescription of rescue medication for frequent symptoms, would be more likely. Promoting advance care planning and EOL discussions at an earlier stage would result in more prepared patients and families.
INTRODUCTION: The symptom profile in cancer patients and the association between palliative care (PC) and symptoms has not been studied in the general population. We addressed these gaps in gastrointestinal (GI) cancer patients in the final year of life.
METHODS: Patients dying of esophageal, gastric, colon, and anorectal cancers during 2003-2015 were identified. Symptom scores were recorded in the year before death using the Edmonton Symptom Assessment System (ESAS), which includes scores from 0 to 10 in nine domains. Symptom severity was categorized as none-mild (=<3) or moderate-severe (>=4-10). Adjusted associations between outpatient PC and moderate-severe ESAS scores were determined, and the effect of PC initiation on ESAS scores was estimated.
RESULTS: The cohort included 11,242 patients who died (esophageal [17%], gastric [20%], colon [38%], and anorectal [26%] cancers). Fifty percent experienced moderate-severe scores in tiredness, lack of well-being, and lack of appetite earlier (weeks 18 to 12 before death), whereas 50% experienced moderate-severe scores in drowsiness, pain, and shortness of breath later (weeks 5 to 2 before death) in the disease course. Outpatient PC was associated with an increased likelihood of moderate-severe scores in all domains, with the highest score in pain (odds ratio [OR] 1.86, 95% confidence interval [CI] 1.68-2.05). In PC-naïve patients with moderate-severe scores, initiation of outpatient PC was associated with a 1- to 3-point decrease in subsequent scores, with the greatest reductions in pain (OR - 1.91, 95% CI - 2.11 to - 1.70) and nausea (OR - 3.01, 95% CI - 3.31 to - 2.71).
CONCLUSION: GI cancer patients experience high symptom burden in the final year of life. Outpatient PC initiation is associated with a decrease in symptoms.
INTRODUCTION: Multiple studies have questioned the benefit of neutropenic diets in decreasing infections in patients with cancer, but recent surveys showed that such diets are still prescribed. In this study, we sought to evaluate the effectiveness of neutropenic diet in decreasing infection and mortality in neutropenic patients with cancer with neutropenia. This review is an update of a previously published systematic review.
MATERIALS AND METHODS: We searched different databases to identify comparative studies that investigated the effect of neutropenic diet compared with regular diet in neutropenic adults and children with cancer. We conducted random-effects meta-analyses using the Der-Simonian and Laird method to pool treatment effects from included studies. Outcomes of interest were mortality, bacteremia/fungemia, major infections, quality of life, and the composite outcome for neutropenic fever and/or infection.
RESULTS: We included six studies (five randomised) with 1116 patients, with 772 (69.1%) having underwent haematopoietic cell transplant. There was no statistically significant difference between neutropenic diet and regular diet in the rates of major infections (relative risk [RR] 1.16; 95% CI 0.94 to 1.42) or bacteremia/fungemia (RR 0.96; 95% CI 0.60 to 1.53). In haematopoietic cell transplant patients, neutropenic diet was associated with a slightly higher risk of infections (RR 1.25; 95% CI 1.02 to 1.54). No difference in mortality was seen between neutropenic diet and regular diet (RR 1.08, 95% CI 0.78 to 1.50).
CONCLUSION: There is currently no evidence to support the use of neutropenic diet or other food restrictions in neutropenic patients with cancer. Patients and clinicians should continue to follow the safe food-handling guidelines as recommended by the U.S. Food and Drug Administration.
Many patients with cancer live in rural areas and research is lacking on the efficacy of palliative care programs in rural community settings. This pilot study was conducted in a primarily rural setting where healthcare professionals delivered palliative care to 52 mostly lower income patients with a variety of cancers. They were assessed for physical, financial, psychosocial and overall symptom intensity at baseline and at three consequent assessments. This pilot study demonstrated the potential efficacy of an outpatient palliative care program in a mostly rural setting in the reduction of physical, psychosocial, and overall symptom intensity in patients with cancer.
PURPOSE: To examine the effectiveness of an advance care planning (ACP) intervention in facilitating concordance between cancer patients' preferred and received life-sustaining treatment (LST) states and to explore modifiable factors facilitating or impeding such concordance.
METHODS: Terminal cancer patients (N=460) were randomly assigned 1:1 to the experimental and control arms of a randomized clinical trial, with 430 deceased participants comprising the final sample. States of preferred LSTs (cardiopulmonary resuscitation, intensive care unit care, chest compression, intubation with mechanical ventilation, intravenous nutrition, and nasogastric tube feeding) and LSTs received in the last month were examined by hidden Markov modeling. Concordance and its modifiable predictors were evaluated by kappa and multivariate logistic regression, respectively.
RESULTS: We identified three LST-preference states (uniformly preferring LSTs, rejecting LSTs except intravenous nutrition support, and mixed LST preferences) and three received LST states (uniformly receiving LSTs, received intravenous nutrition only, and selectively receiving LSTs). Concordance was not significantly higher in the experimental than the control arm (kappa [95% CI]:0.126 [0.032, 0.221] vs. 0.050 [-0.028, 0.128]; arm difference: odds ratio [95% CI]: 1.008 [0.675, 1.5001]). Preferred-received LST-state concordance was facilitated by accurate prognostic awareness, better quality of life, and more depressive symptoms, whereas concordance was impeded by more anxiety symptoms.
CONCLUSIONS: Our ACP intervention did not facilitate concordance between terminally ill cancer patients' preferred and received LST states, but patient value-concordant end-of-life care may be facilitated by interventions to cultivate accurate prognostic awareness, improve quality of life, support depressive patients, and clarify anxious patients' over-expectations of LST efficacy.
CONTEXT: Postloss depressive-symptom trajectories are heterogeneous and predicted by preloss psychosocial resources, but this evidence was from one old study on terminal cancer patients' caregivers for whom these issues are highly relevant.
OBJECTIVES: To identify depressive-symptom trajectories among cancer patients' bereaved caregivers and examine if they are predicted by preloss psychosocial resources while considering caregiving burden.
METHODS: Preloss psychosocial resources (sense of coherence [SOC] and social support) were measured among 282 caregivers. Depressive symptoms were measured by the Center for Epidemiological Studies-Depression [CES-D] scale 1, 3, 6, 13, 18, and 24 months postloss (CES-D scores >16 indicate severe depressive symptoms). Distinct depressive-symptom trajectories and their predictors were identified by latent-class growth analysis.
RESULTS: We identified five depressive-symptom trajectories (prevalence): endurance (47.2%), resilience (16.7%), transient-reaction (20.2%), prolonged symptomatic (11.7%), and chronically distressed (4.2%). Over 2 years postloss, the endurance group never experienced severe depressive symptoms. Severe depressive symptoms lasted 6, 7-12, and 18 months for the resilience, transient-reaction, and prolonged-symptomatic groups, respectively. The chronically distressed group's severe depressive symptoms persisted. The endurance and chronically distressed groups had the best and weakest psychological resources, respectively. Endurance-group caregivers perceived the greatest social support, whereas the resilience and transient-reaction groups had higher social support than the prolonged-symptomatic group.
CONCLUSIONS: Most (84.1%) caregivers' depressive symptoms subsided within 1-year postloss. Preloss psychosocial resources predicted depressive-symptom trajectories for bereaved caregivers. Healthcare professionals can help caregivers adjust their bereavement by providing support to enhance their SOC and encouraging social contacts while they are providing end-of-life care.
BACKGROUND AND OBJECTIVES: Clinical management for terminal patients should consider various aspects, particularly the patient's functional assessment, which correlates well with the short-term prognosis. The prognosis could improve if the presence of symptoms strongly associated with a poorer progression were included. The study's main objective was to assess whether the prognosis according to the Palliative Performance Scale (PPS) improved with the presence/absence of pain-dyspnoea-delirium symptoms. The secondary objective was to determine caregiver satisfaction with the transfer to medium-stay palliative care units (MSPCUs), which are prepared for medium stays of approximately one month.
PATIENTS AND METHOD: We conducted a prospective, observational, multicentre (regional) study that analysed survival in MSPCUs according to the PPS dichotomized to > 20% and = 20%. We estimated the mean survival functions using the Kaplan-Meier method and compared them according to the Cox proportional hazards ratios (HR). Caregiver satisfaction was studied using an anonymous self-administered Likert questionnaire.
RESULTS: The study included 130 patients. The PPS = 20% and PPS > 20% subgroups had a median survival of 6 (3-13) days and 21 (11-42) days, respectively, with an unadjusted mortality HR 3.1-fold greater in the PPS = 20% subgroup. The HR did not change when adjusted for the symptoms. Eighty-three percent of the caregivers found the transfer beneficial, and 40% observed better patient care.
CONCLUSIONS: For patients transferred from general hospitals to MSPCUs, PPS scores = 20% were associated with survival shorter than one week, with a 3-fold higher mortality HR than patients with PPS scores > 20%, without the analysis adjusted for the presence of pain-dyspnoea-delirium providing greater prognostic accuracy. The caregivers found benefits mainly in the convenience of the facilities and distance.
Long-term neurological conditions (LTNCs) often cause debilitating symptoms. Better understanding of symptom dimensions in LTNCs is needed to support health professionals and improve care. This can be achieved by exploring the factor structure of a standardised measure of symptoms in LTNC patients. The symptom subscale of the Integrated Palliative Outcome Scale for LTNCs (IPOS Neuro-S24) comprises 24 items measuring symptom severity. Descriptive statistics and psychometric properties of the scale were assessed, followed by differential item functioning (DIF), exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). Data from N = 238 patients were analysed. The mean IPOS Neuro S-24 score was 27.0 (possible range 0–96) and floor effects were found for 21 items. The scale had good internal consistency (Cronbach’s alpha = 0.77). Weak evidence of DIF was found for nine items. All but one item (falls) loaded onto four factors with loadings > 0.3. The factors represented four clinically meaningful symptom dimensions: fatigue, motor symptoms, oral problems and non-motor symptoms. We identified a reliable four-factor structure of symptom experience in LTNC patients. The results suggest that symptom dimensions are common across LTNCs. The IPOS Neuro S-24 is an appropriate tool to measure symptoms in LTNC patients, which may improve care.
Background.: Financial distress (FD) is common among patients with advanced cancer. Our purpose was to compare the frequency and intensity of FD and its associations with symptom distress and quality of life (QOL) in these patients in France and the U.S.
Materials and Methods: In this secondary analysis of two cross-sectional studies, we assessed data on 292 patients who received cancer care at a public hospital or a comprehensive cancer center in France (143 patients) or the U.S. (149 patients). Outpatients and hospitalized patients over 18 years of age with advanced lung or breast or colorectal or prostate cancer were included. Diagnosed cognitive disorder was considered a noninclusion criterion. Advanced cancer included relapse or metastasis or locally advanced cancer or at least a second-line chemotherapy regimen. Patients self-rated FD and assessed symptoms, psychosocial distress, and QOL on validated questionnaires.
Results: The average patient age was 59 years, and 144 (49%) were female. FD and high intensity were reported more frequently in U.S. patients than in French (respectively 129 [88%] vs. 74 [52%], p < .001; 100 [98%] vs. 48 [34%], p < .001,). QOL was rated higher by the U.S. patients than by the French (69 [SD, 18] vs. 63 [SD, 18], p = .003). French patients had more psychological symptoms such as anxiety (8 [SD, 4] vs. 6 [SD, 5], p = .008). Associations were found between FD and U.S. residence, FD and single status (0.907, p = .023), and FD and metastasis (1.538, p = .036). In contrast, negative associations were found between FD and older age (-0.052, p = .003) and FD and France residence (-3.376, p = .001).
Conclusion: Regardless of health care system, FD is frequent in patients with advanced cancer. U.S. patients were more likely to have FD than French patients but reported better QOL. Further research should focus on factors contributing to FD and opportunities for remediation.
BACKGROUND: There is limited understanding of the symptoms that older people living with cancer, chronic obstructive pulmonary disease and chronic kidney disease experience during the last year of life in Thailand, in addition to their health service preferences.
AIMS: To survey the symptom experiences and health service preferences at the end of life of older people with chronic illnesses from the perspective of bereaved carers.
METHODS: The study used a retrospective post-bereavement approach to collect quantitative data. Purposive sampling was used to select 76 bereaved relatives of older people living with chronic illnesses who had died in the previous 5 to10 months. Telephone interviews and a translated version of the Views of Informal Carers-Evaluation Services (VOICES) questionnaire were conducted. Data were analysed using the statistical package SPSS version 17.
FINDINGS: The overall quality of care received by older people living with chronic diseases during the last three months of life was described as 'good' (36%). However, in comparing the quality of care from different settings, most of the subjects (63%) thought that the quality of care at home should be rated as 'poor'. During the last twelve months, 35% of the respondents rated pain and poor appetite as the main symptoms, while 25% described experiencing 'worry' related to being at the end of life. The severity of many symptoms increased during the last three months of life; 21% of carers recommended that pain caused the most suffering to their relatives at 'all times', when compared with other symptoms of end of life. Around 21-35% reported that their relatives 'sometimes' experienced worry, low mood, breathlessness and oedema. During the last three days of life, it was reported by 97% of respondents that their relatives spent all of their time in hospital, and no respondents reported that their relatives had died at home.
CONCLUSION: The study indicates that older people living with chronic diseases in Thailand are less likely to access specialist palliative care and are more likely to have poor symptom control at the end of life. It indicates that health services may not be meeting patients' needs and that there was clearly insufficient healthcare provision at home for older people to help them to manage their symptoms such as pain and breathlessness.
Background: Early specialized palliative care improves quality of life of patients with advanced cancer, and guidelines encourage its integration into standard oncology care. However, many patients fail to obtain timely palliative/supportive care evaluations, particularly in limited-resource settings. We aimed to determine the proportion of patients with advanced cancer who received an assessment of symptoms and were referred to supportive and palliative care services during the first year after diagnosis in a Mexican hospital.
Methods: Individuals with newly diagnosed advanced solid tumors and 1 year of follow-up at the oncology clinics in the Instituto Nacional de Ciencias Medicas y Nutricion Salvador Zubiran in Mexico City from October 2015 to April 2016 were included in this retrospective study.
Results: Seventy-seven patients were included. Forty-two (54.5%) were referred to the various supportive care services during the first year after diagnosis, and 23 (29.8%) were referred to the palliative care clinic. The most commonly assessed symptoms by oncologists were pain (77.9%), anorexia (74.0%), fatigue (68.8%), and nausea (55.8%), while depression/anxiety were evaluated in 10 (12.9%) patients. The oncologist offered to clarify treatment goals in 39 (50.6%) cases and evaluated the understanding of diagnosis/illness and prognosis in 22 (28.5%).
Conclusion: Palliative and supportive care services were widely underutilized, which may be related to a lack of standardized symptom assessments and poor end-of-life communication. Novel strategies are needed to improve the implementation of tools for systematic symptom assessment and to optimize the integration of supportive care interventions into oncology care in developing countries.
BACKGROUND: Neoplastic pericardial effusion (NPE) is a life-threatening condition that can worsen clinical outcome in cancer patients. The optimal management of NPE has yet to be defined because randomized studies are lacking.
OBJECTIVE: We report a retrospective monoinstitutional experience describing characteristics, management and prognostic factors in NPE patients.
DESIGN: We reviewed clinical, pathological, and echocardiographic features, therapeutic strategies, and outcome in NPE patients referred to our institute from August 2011 to December 2017.
MEASUREMENTS: Twenty-nine patients with NPE from solid tumors have been identified: 21 lung, 5 breast, and 3 other cancer patients.
RESULTS: Median age was 62 years. Most of the patients had Eastern Cooperative Oncology Group (ECOG) performance status (PS) =2 (69%) and a symptomatic NPE (69%). In 52% of patients NPE was detected at first diagnosis of metastatic disease, and in 20% of patients pericardium was the only site of metastases. Most of the patients (62%) received systemic therapy, 28% received combined locoregional and systemic therapy, and 10% received locoregional therapy alone. Median overall survival (OS) from NPE diagnosis was 3.9 months. Patients with PS =2 had worse OS than patients with better PS <2 (hazard ratio [HR] 3.56, IC 95% 1.19–10.65, p 0.02). Older age, extrapericardial disease, and NPE at progression showed a trend of association with worse OS. Patients treated with locoregional therapy alone showed the shortest median OS (p 0.05).
CONCLUSIONS: NPE is related to dismal prognosis. Poor PS significantly worsens survival and influences therapeutic approaches. Randomized studies are required to investigate prognostic factors and appropriate clinical management for patients with NPE.
Background: Terminally ill cancer patients' worsening symptom distress and functional impairment may signal disease deterioration, thus facilitating their accurate prognostic awareness (PA). However, the joint roles played by symptom distress and functional impairment in association with cancer patients' accurate PA remain unexplored.
Methods: We used hierarchical generalized linear modeling to assess associations between our five identified worsening conjoint symptom-functional states and accurate PA in a convenience sample of 317 terminally ill cancer patients over their last six months.
Results: The majority of our participants (70.1%-76.3%) had accurate PA in their last six months. This proportion did not increase as death approached but varied significantly by the five identified distinct symptom-functional states. Participants in the four worst symptom-functional states (moderate/profound symptom distress with mild/profound functional impairment) had a higher likelihood of accurate PA than those in the best state (mild symptom distress with high functioning). Participants with severe or profound symptom distress (states 3 and 5) had a substantially higher likelihood of accurate PA than those with moderate symptom distress (states 2 and 4).
Conclusion/Clinical Implications: Terminally ill cancer patients' five distinct conjoint worsening symptom-functional states were differentially associated with their likelihood of accurate PA. Health care professionals should cultivate these patients' accurate PA when they are still free from severe symptom distress and functional impairment, effectively manage symptoms for those suffering from severe/profound symptom distress, and facilitate their psychological-spiritual adjustment to acknowledge their poor prognosis and the accompanying challenges of end-of-life care decisions to maximize quality of life and achieve a good death.
OBJECTIVE: Implementation of patient-reported outcome measures for patients with palliative care needs is characterized by both enablers and barriers. The ways in which healthcare professionals experience the use of assessment tools is important. Our aims were to explore factors contributing to or hindering patients with palliative care needs in assessing their symptoms with the Integrated Palliative Care Outcome Scale (IPOS) and to explore healthcare professionals' experiences of the use of IPOS in acute care settings.
METHOD: Data were collected as a part of the evaluation of the feasibility of an implementation strategy for introducing IPOS. Data from three participating acute care units were included. We used descriptive and analytical statistics; a qualitative content analysis was also performed. RESULT: A total of 309 patients were eligible to be offered assessment of symptoms with IPOS. Of these 69 (22%) had completed IPOS. A significant positive association was found between healthcare professionals' participation in training sessions and completed IPOS. The experiences of IPOS were split into two categories: "IPOS acting as a facilitator" and "barriers to the use of IPOS." The use of IPOS was described as contributing to person-centered care of patients with palliative care needs and inspiration to improved routines. Healthcare professionals' feelings of uncertainty about how to approach severely ill patients and their family members appear to have hindered their use of IPOS.
SIGNIFICANCE OF RESULTS: We found an association between healthcare professionals' participation in training sessions and patients who completed IPOS, indicating the need for a high degree of attendance at the training to achieve successful implementation. The healthcare professionals expressed feelings of insecurity concerning the use of IPOS indicating a need for further education and clinical support in its use of IPOS. Nevertheless, use of IPOS was considered to contribute to improved care of patients with palliative care needs.
Background: Persistent complex bereavement disorder (PCBD) is a disorder of grief that newly entered DSM-5. Prolonged grief disorder (PGD) is a disorder of grief included in ICD-11. No prior studies examined and compared the dimensionality, prevalence, and concurrent validity of both conditions among bereaved children.
Methods: With data from 291 help-seeking bereaved 8–18 year old children, we used confirmatory factor analysis to evaluate the fit of different factor models for PCBD and PGD. In addition, we determined diagnostic rates for probable PCBD and PGD and calculated associations of PCBD and PGD caseness with concurrently assessed symptoms of overall disturbed grief, depression, posttraumatic stress, and parent-rated problem behavior.
Results: For PCBD and PGD, one-factor models—with all symptoms forming a unidimensional factor of disturbed grief—fit the data best. The prevalence of probable DSM-5 PCBD (3.4%) was significantly lower than ICD-11 PGD (12.4%). Both PCBD and PGD were significantly associated with concurrently assessed overall disturbed grief, depression, and posttraumatic stress; associations with parent-rated problems were moderate.
Limitations: Findings were based on self-reported ratings of symptoms, obtained from three different scales not specifically designed to assess PCBD and PGD. The use of a help-seeking sample limits the generalization of findings to bereaved children generally.
Conclusions: Findings support the validity of DSM-5 PCBD and ICD-11 PGD. Prevalence rates of both constructs differ. This needs further scrutiny.
Nonmotor symptoms likely affect overall quality of life in Parkinson's disease (PD) as much as motor symptoms. Fast Fact #361 discussed the natural trajectory of PD. This Fast Fact will focus on management stratégies of common nonmotor symptoms in PD patients.
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BACKGROUND: Polypharmacy may be particularly burdensome near the end of life, as patients "accumulate" medications to treat and prevent multiple diseases.
OBJECTIVE: To evaluate associations between polypharmacy, symptom burden, and quality of life (QOL) in patients with advanced, life-limiting illness (clinician-estimated, 1 month-1 year).
DESIGN: Secondary analysis of baseline data from a trial of statin discontinuation.
PARTICIPANTS: Adults with advanced, life-limiting illness.
MAIN MEASURES: Polypharmacy was assessed by summing the number of non-statin medications taken regularly or as needed. Symptom burden was assessed using the Edmonton Symptom Assessment Scale (range 0-90; higher scores indicating greater symptom burden) and QOL was assessed using the McGill QOL Questionnaire (range 0-10; higher scores indicating better QOL). Linear regression models assessed associations between polypharmacy, symptom burden, and QOL.
KEY RESULTS: Among 372 participants, 47% were age 75 or older and 35% were enrolled in hospice. The mean symptom score was 27.0 (standard deviation (SD) 16.1) and the mean QOL score was 7.0 (SD 1.3). The average number of non-statin medications was 11.6 (SD 5.0); one-third of participants took = 14 medications. In adjusted models, higher polypharmacy was associated with higher symptom burden (coefficient 0.81; p < .001) and lower QOL (coefficient - .06; p = .001). Adjusting for symptom burden weakened the association between polypharmacy and QOL (coefficient - .03; p = .045) without a significant interaction, suggesting that worse quality of life associated with polypharmacy may be related to medication-associated symptoms.
CONCLUSIONS: Among adults with advanced illness, taking more medications is associated with higher symptom burden and lower QOL. Attention to medication-related symptoms and shared decision-making regarding deprescribing are warranted in this setting.
NIH TRIAL REGISTRY NUMBER: ClinicalTrials.gov Identifier for Parent Study - NCT01415934.
BACKGROUND: Although bereavement is likely a common stressor among patients referred to a psychotrauma clinic, no study has yet examined the co-occurrence and relationships between symptoms of prolonged grief disorder (PGD), posttraumatic stress disorder (PTSD), and major depressive disorder symptoms in this population.
METHOD: In a sample of patients seeking treatment following psychological trauma (n = 458), we used latent class analysis to identify classes of patients sharing the same profile of PGD, PTSD, and depression symptoms. We then used network analysis to investigate the relationships among these symptoms and with loss-related variables.
RESULTS: Most participants (65%) were members of a class that exhibited elevated endorsement of PGD symptoms. PGD, PTSD, and depression symptoms hung together as highly overlapping but distinguishable communities of symptoms. Symptoms related to social isolation and diminished sense of self bridged these communities. Violent loss was associated with more difficulty accepting the loss. The loss of close kin was most strongly associated with difficulty moving on in life.
CONCLUSIONS: PGD symptoms are common in trauma-exposed bereaved adults and closely associated with symptoms of PTSD and depression, illustrating the importance of assessing bereavement and PGD symptoms in those seeking treatment following trauma.