scholarly journals P.078 Clinical Milestones in PSP and MSA may be Appropriate Triggers for Palliative Care Intervention

2021 ◽  
Vol 48 (s3) ◽  
pp. S41-S42
Author(s):  
R Bessemer ◽  
T Gofton
Keyword(s):  
Palliative Care ◽  
Cognitive Impairment ◽  
Relevant Literature ◽  
Symptom Burden ◽  
Disease Trajectory ◽  
Care Services ◽  
Medical Librarian ◽  
Palliative Care Services ◽  
Home Placement ◽  
Urinary Catheterisation

Background: Progressive supranuclear palsy (PSP) and multiple system atrophy (MSA) are progressive neurodegenerative disorders with complex symptom burden and unpredictable disease trajectories. The ideal timing of palliative care interventions is uncertain given the variable natural history of both diseases. Methods: A systematic review was conducted to identify publications investigating predictors of survival in PSP and MSA. A medical librarian assisted to ensure comprehensive search strategy. Relevant literature on palliative care in PSP and MSA was also reviewed. Results from both searches were qualitatively combined in order to suggest triggers for targeted palliative care throughout the disease trajectory. Results: ‘Milestones’ are well documented and clinically relevant disease points that prompt further care. Important milestones include: frequent falls, cognitive impairment, unintelligible speech, severe dysphagia, wheelchair dependence, urinary catheterisation, and nursing home placement. PSP-Richardson syndrome accumulates milestones earlier than PSP-Parkinsonism or MSA. Many PSP patients already have falls and cognitive impairment at the time of diagnosis. Time from milestone to death is variable. Conclusions: Milestones can be used to trace disease progression and help predict survival. Clinical milestones are likely to be important triggers for targeted palliative care interventions including the early incorporation of a palliative approach to care or referral to specialised palliative care services.

Integration of specialist palliative care services into a multidisciplinary adolescent and young adult (AYA) oncology team.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 64-64
Author(s):  
Rachel Elizabeth Hughes ◽  
Kate Thompson
Keyword(s):  
Palliative Care ◽  
Young Adult ◽  
Clinical Oncology ◽  
Symptom Management ◽  
Symptom Burden ◽  
Multidisciplinary Care ◽  
Adolescent And Young Adult ◽  
Curative Intent ◽  
Care Services ◽  
Palliative Care Services

64 Background: Palliative care is recommended alongside standard oncological care for patients with advanced cancer or high symptom burden (Smith TJ, Temin S, et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. Journal of Clinical Oncology. 2012;30(8)880-7.). AYA oncology patients are distinguished by several age-specific developmental and biopsychosocial factors, resulting in a unique impact profile (Wein S, Pery S, Zer A. Role of palliative care in adolescent and young adult oncology. J Clin Oncol. 2010;28:4819-4824). Methods: To examine the benefits of multidisciplinary AYA care, a palliative care fellow was incorporated into an existing AYA oncology team in Australia, for a 12 month period. This role facilitated assessment/management of symptoms, general health issues, treatment toxicity, end of life care and bereavement support. Results: Between 2012 and 2013, of 83 new patients were referred to the AYA oncology service, 27 (32.5%) were referred the palliative care fellow. Notably, 37% of patients referred were receiving curative intent treatment. 10 patients (37%) were referred at diagnosis for symptom management. Pain was the most frequent reason for referral (n=17 63%). A total of 7 patients (26%) were referred for advanced disease/terminal care. Conclusions: Evaluation demonstrates that onsite availability of palliative care services is acceptable, facilitates early referral and has encouraged collaborative, AYA multidisciplinary care. A significant additional finding has been recognition of the demand for symptom management of patients early in their cancer experience. Further development and evaluation of AYA specific palliative care is warranted.

scholarly journals The Role of Resilience in the Sibling Experience of Pediatric Palliative Care: What Is the Theory and Evidence?

Children ◽  
2018 ◽  
Vol 5 (7) ◽  
pp. 97 ◽  
Author(s):  
Wei Chin ◽  
Tiina Jaaniste ◽  
Susan Trethewie
Keyword(s):  
Palliative Care ◽  
Family System ◽  
Pediatric Palliative Care ◽  
Future Research ◽  
Medical Conditions ◽  
Disease Trajectory ◽  
Care Services ◽  
The Family ◽  
Palliative Care Services

Siblings of children with life limiting conditions (LLC) are an important part of the broader family system and require consideration in the holistic care of the family. There can be considerable variation in the functioning and adjustment of these siblings. The current paper explores the resilience paradigm, particularly in the context of siblings of children with LLC and serious medical conditions. The potential impact of children living with a seriously ill brother or sister will be overviewed, and a range of functional outcomes considered. Factors contributing to sibling resilience are detailed, including individual, family, and broader external and social factors. Given the limited research with siblings of children with LLC, literature has also been drawn from the siblings of children with serious and/or chronic medical conditions. Implications for clinical practice and future research are considered. Pediatric palliative care services may be well placed to contribute to this body of research as they have commonly extended relationships with the families of children with LLC, which span across the child’s disease trajectory.

Palliative care need among inpatients in acute general hospitals in Nepal: a point prevalence survey

2017 ◽  
Vol 4 (1) ◽  
pp. 42-46 ◽  
Author(s):  
Paras Acharya ◽  
Bimal Pandey ◽  
Yagya Pokhrel ◽  
Kedar Baral ◽  
Dan Munday ◽  
...  
Keyword(s):  
Palliative Care ◽  
Planning Process ◽  
Symptom Burden ◽  
Abdominal Distension ◽  
Point Prevalence ◽  
Prevalence Survey ◽  
Cross Sectional ◽  
Care Services ◽  
Point Prevalence Survey ◽  
Palliative Care Services

Introductions: Developing palliative care services in acute hospitals is important to address the need of patients dying from malignant and non-malignant diseases. This study is carried out to assess the need of palliative care in Patan Hospital to inform the planning process for starting palliative care services. Methods: A cross-sectional, point prevalence survey of in-patient beds occupied in Patan Hospital was carried out using Supportive and Palliative Care Indicators Tool. For patients who met the criteria, symptom burden was noted. Results: Of the 116 patients admitted on the day of surveillance, 30% met the criteria for palliative care need; 60% were aged 60 or above. The most common conditions requiring palliative care need was lung disease (46%) followed by cardio vascular (23%) and neurological diseases (23%). The most common symptoms patients were suffering from were fatigue (60%) followed by shortness of breath (51%), inability to move (35%), abdominal distension (31%), anorexia (31%) and pain (25%). Conclusions: Almost one third of patients admitted to Patan Hospital need palliative care with majority of them being above sixty years. This highlights the need to develop palliative care services in the hospital to address the need of such patients and families to improve the quality of life in the last years of life.

Symptom distress and patterns of palliative-care referral among oncology outpatients.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 185-185
Author(s):  
Kaylan Christianer ◽  
Craig D Blinderman
Keyword(s):  
Palliative Care ◽  
Metastatic Disease ◽  
Tertiary Care ◽  
Symptom Burden ◽  
Symptom Distress ◽  
Care Hospital ◽  
Oncology Patients ◽  
Care Services ◽  
Edmonton Symptom Assessment Scale ◽  
Palliative Care Services

185 Background: The early implementation of palliative care services is recognized as an important aspect of oncologic care. However, rates of referral to palliative care services among oncology patients are still low, and the decision to refer is frequently at the discretion of the treating oncologist or by patient request. We sought to better identify the patterns of referral to outpatient palliative care, as well as patient symptom burden in an effort to target early and high-yield palliative care interventions. Methods: We conducted a cross-sectional survey among outpatients presenting to a Hematology/Oncology practice at a tertiary care hospital. Patients presenting to the clinic were asked to complete an Edmonton Symptom Assessment Scale (ESAS) survey at time of registration. Chart review was completed to identify basic demographic information, timing and extent of cancer diagnosis, basic medical and psychiatric comorbidities, and existing referral to palliative care services. Results: Between November 15, 2014 and December 24, 2014, a total of 146 complete surveys were collected from oncology outpatients. The most common malignancies were hematologic (40.4%), lung (24.6%), breast (8.2%), gastrointestinal (6.8%) and genitourinary (6.8%); 30.1% had metastatic disease at the time of the visit. A total of 13 patients (8.9%) were receiving outpatient palliative care services. As compared to patients not receiving palliative care services, those who were reported higher overall symptom distress scores (26.3 vs. 12.7, p = 0.013) and pain scores (3.5 vs. 1.6, p = 0.03). Patients receiving palliative care services also had fewer years since diagnosis (2.8 years vs. 4.5 years, p = 0.028), and a non-significant trend toward higher rates of metastatic disease (72.7% vs. 47.3%, p = 0.059). Conclusions: Overall, low rates of referrals to palliative care were found among oncology outpatients. In addition, this study suggests oncology patients are referred to palliative care at later stages of disease, when they are already experiencing significant symptom burden. Future research will determine which patients will benefit from earlier referrals to palliative care before symptoms become more advanced.

Discussing the Evidence for Upstream Palliative Care in Improving Outcomes in Advanced Cancer

2016 ◽  
pp. e534-e538 ◽  
Author(s):  
Myles S. Nickolich ◽  
Areej El-Jawahri ◽  
Jennifer S. Temel ◽  
Thomas W. LeBlanc
Keyword(s):  
Palliative Care ◽  
Cancer Care ◽  
Symptom Burden ◽  
Early Integration ◽  
Patients With Cancer ◽  
Care Services ◽  
Palliative Care Services ◽  
American Society ◽  
Definition Of ◽  
State Of The Science

Palliative care has received increasing attention at the American Society of Clinical Oncology (ASCO) Annual Meeting since the publication of its provisional clinical opinion on the topic in 2012. Despite frequent discussion, palliative care remains a source of some controversy and confusion in clinical practice, especially concerning who should provide it, what it encompasses, and when and how it can help patients and their families. In this article, we provide a formal definition of palliative care and review the state of the science of palliative care in oncology. Several randomized controlled trials now show that palliative care improves important outcomes for patients with cancer. Related outcome improvements include a reduction in symptoms, improved quality of life, better prognostic understanding, less depressed mood, less aggressive end-of-life care, reduced resource utilization, and even prolonged survival. As such, ASCO recommends early integration of palliative care into comprehensive cancer care for all patients with advanced disease and/or significant symptom burden. Our aim is that this summary will facilitate greater understanding about palliative care and encourage further integration of palliative care services into cancer care. More research is needed to illuminate the mechanisms of action of palliative care and to improve the specificity of palliative care applications to unique scenarios and populations in oncology.

scholarly journals Does the Type and Frequency of Palliative Care Services Received by Patients with Advanced Heart Failure Impact Symptom Burden?

2014 ◽  
Vol 17 (1) ◽  
pp. 75-79 ◽  
Author(s):  
Lorraine S. Evangelista ◽  
Solomon Liao ◽  
Marjan Motie ◽  
Nathalie De Michelis ◽  
Jennifer Ballard-Hernandez ◽  
...  
Keyword(s):  
Heart Failure ◽  
Palliative Care ◽  
Symptom Burden ◽  
Advanced Heart Failure ◽  
Care Services ◽  
Palliative Care Services

scholarly journals Trends and Racial Disparities of Palliative Care Use among Hospitalized Patients with ESKD on Dialysis

2019 ◽  
Vol 30 (9) ◽  
pp. 1687-1696 ◽  
Author(s):  
Yumeng Wen ◽  
Changchuan Jiang ◽  
Holly M. Koncicki ◽  
Carol R. Horowitz ◽  
Richard S. Cooper ◽  
...  
Keyword(s):  
Palliative Care ◽  
Racial Disparities ◽  
Ethnic Disparities ◽  
Symptom Burden ◽  
Inpatient Setting ◽  
Care Services ◽  
Palliative Care Consultation ◽  
Palliative Care Services ◽  
To Receive ◽  
White Patients

BackgroundStudy findings show that although palliative care decreases symptom burden, it is still underused in patients with ESKD. Little is known about disparity in use of palliative care services in such patients in the inpatient setting.MethodsTo investigate the use of palliative care consultation in patients with ESKD in the inpatient setting, we conducted a retrospective cohort study using the National Inpatient Sample from 2006 to 2014 to identify admitted patients with ESKD requiring maintenance dialysis. We compared palliative care use among minority groups (black, Hispanic, and Asian) and white patients, adjusting for patient and hospital variables.ResultsWe identified 5,230,865 hospitalizations of such patients from 2006 through 2014, of which 76,659 (1.5%) involved palliative care. The palliative care referral rate increased significantly, from 0.24% in 2006 to 2.70% in 2014 (P<0.01). Black and Hispanic patients were significantly less likely than white patients to receive palliative care services (adjusted odds ratio [aOR], 0.72; 95% confidence interval [95% CI], 0.61 to 0.84, P<0.01 for blacks and aOR, 0.46; 95% CI, 0.30 to 0.68, P<0.01 for Hispanics). These disparities spanned across all hospital subtypes, including those with higher proportions of minorities. Minority patients with lower socioeconomic status (lower level of income and nonprivate health insurance) were also less likely to receive palliative care.ConclusionsDespite a clear increase during the study period in provision of palliative care for inpatients with ESKD, significant racial disparities occurred and persisted across all hospital subtypes. Further investigation into causes of racial and ethnic disparities is necessary to improve access to palliative care services for the vulnerable ESKD population.

53 The palliative care needs of people with motor neurone disease (MND) and their informal caregivers: a time for change

2018 ◽  
Vol 8 (3) ◽  
pp. 380.1-380
Author(s):  
Kate Flemming ◽  
Victoria Turner
Keyword(s):  
Qualitative Research ◽  
Palliative Care ◽  
Health Care Services ◽  
Informal Caregivers ◽  
Social Science Citation Index ◽  
Care Needs ◽  
Disease Trajectory ◽  
Care Services ◽  
Palliative Care Services ◽  
Palliative Care Needs

IntroductionDespite being a terminal neurodegenerative disease the role of palliative care is less recognised for MND than for conditions such as cancer. The palliative care needs of patients and carers must be understood in order to best configure policy and health care services for this population.AimTo explore the palliative care needs of adult patients and their informal carers living with MND or bereaved carers of people with MND through a systematic review of qualitative research.MethodFour electronic databases were searched (MEDLINE CINAHL PsycINFO Social Science Citation Index) using terms for MND ALS palliative care and a qualitative research filter. Included papers were data extracted and assessed for quality. The review was conducted using thematic synthesis.Results410 papers were identified and 39 included representing the experiences of 456 people with MND and 345 informal caregivers.Two sets of analytical themes were identified. The first represents the disease trajectory and specific chronological points within it. The second details three sets of influencing factors (internal external and connecting factors) that impact on people’s experiences of events along the disease trajectory. Analysing the intersections of these themes highlighted which palliative care needs are most required at each stage.ConclusionDespite being a life-limiting condition people with MND and their carers have limited awareness of or involvement with palliative care services. There are clear points in the disease trajectory where palliative care input could enhance patient and carer experience of the disease particularly at times of significant physical change.

Integrating palliative care services in oncology clinics: An application of the Edmonton Symptom Assessment System (ESAS).

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 168-168
Author(s):  
Sherri L. Rauenzahn ◽  
Susanne Schmidt ◽  
Jessica Jones ◽  
Ifeoma Aduba ◽  
Laura LaNiel Tenner
Keyword(s):  
Palliative Care ◽  
Symptom Burden ◽  
Symptom Assessment ◽  
Assessment System ◽  
Cancer Center ◽  
Edmonton Symptom Assessment System ◽  
Care Services ◽  
Palliative Care Services

168 Background: Research inpalliative care has shown improvements in overall survival, quality of life, symptom management, care satisfaction and reductions in the cost of care. Therefore, the American Society of Clinical Oncology has recommended early concurrent palliative care in patients with advanced cancer and with high symptom burden. Despite this recommendation, integrating palliative services at our NCI-designated cancer center has been challenging. The aims of this project were to quantitatively describe the symptom burden of patients in ambulatory oncology clinics; facilitate the establishment of an effective referral system by detecting discrepancies between symptom burden and referral practices; and improve the integration of palliative care services by implementing the Edmonton Symptom Assessment System (ESAS) tool into 5 of our oncology clinics. Methods: ESAS forms consist of 10 questions assessing patient symptom burden and quality of life. Total scores range from 0 to 100. This tool was distributed to patients at two breast, two gastrointestinal and the thoracic clinics at each visit. The provider reviewed the forms and decided if a palliative care referral was appropriate based on patient responses. The forms as well as referral decisions were entered into REDCap. Over a 5 month period, 607 patients completed the initial assessment and 430 follow up forms were collected, resulting in a total of 1,037 scores collected. Results: The mean ESAS score for all patient visits was 20.7 (SD = 18.7). Only 3.5% (n = 21) of all patients were initially referred to palliative care and 2.6% (n = 11) of patients were referred on follow up visits. Those with an initial referral had an initial mean score of 39.0 (SD = 19.0) and a mean follow up score of 31.9 (SD = 19.5). Conclusions: This project highlights the low palliative care consultation rate and the under-utilization of services by most oncologists at the cancer center despite using the ESAS tool. However, those who received a referral had lower ESAS scores at follow-up. We propose utilizing a trigger that would capture a preset percentage of patients who indicated scores reflective of high symptom burden and distress.

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