Need For Specialist Palliative Care Research Articles

Screening for Palliative Care Need in Oncology: Validation of Patient-Reported Outcome Measures

ContextLeading oncology societies recommend monitoring symptoms and support needs through patient-reported outcome measures (PROMs), but their use for assessing specialist palliative care (SPC) need has not yet been explored. Research on SPC integration has focused on staff-assessed screening tools, which are time-consuming. ObjectivesThis study aimed to assess the diagnostic validity of the Integrated Palliative Outcome Scale (IPOS) and NCCN Distress Thermometer (NCCN DT) in identifying need for SPC in patients with incurable cancer. MethodsIn a cross-sectional study, patients with incurable cancer (prognosis <2 years) completed PROMs. In an independent process, the palliative care consultation service (PCCS) assessed the need for SPC in each patient through multiprofessional case review, and this was used as the reference standard. ROC analyses were employed to determine diagnostic validity. ResultsOf the 208 participants, 71 (34.1 %) were classified as having SPC need by the PCCS. Aiming for a minimum sensitivity of 80%, a cut-off of ≥2 items with high/very high burden in the IPOS resulted in a 90.2% sensitivity (specificity = 50; AUC = 0.791; CI 95%= 0.724–0.858). A cut-off of ≥5 resulted in a sensitivity of 80 % for NCCN DT (specificity = 49.5 %; AUC = 0.687; CI 95% = 0.596–0.777). ConclusionPROMs are useful for identifying SPC need in cancer patients. Their implementation might facilitate timely integration of SPC. Future research should focus on an integrated assessment approach with PROMs that combines the requirements of the different specialties to save patient and staff resources.

Interrater agreement of multi-professional case review as reference standard for specialist palliative care need: a mixed-methods study

BackgroundA wide variety of screening tools for the need for specialist palliative care (SPC) have been proposed for the use in oncology. However, as there is no established reference standard for SPC need to compare their results with, their sensitivity and specificity have not yet been determined. The aim of the study was to explore whether SPC need assessment by means of multi-professional case review has sufficient interrater agreement to be employed as a reference standard.MethodsComprehensive case descriptions were prepared for 20 inpatients with advanced oncologic disease at the University Hospital Freiburg (Germany). All cases were presented to the palliative care teams of three different hospitals in independent, multi-professional case review sessions. The teams assessed whether patients had support needs in nine categories and subsequently concluded SPC need (yes / no). Interrater agreement regarding SPC need was determined by calculating Fleiss’ Kappa.ResultsIn 17 out of 20 cases the three teams agreed regarding their appraisal of SPC need (substantial interrater agreement: Fleiss’ Kappa κ = 0.80 (95% CI: 0.55–1.0; p < 0.001)). The number of support needs was significantly lower for patients who all teams agreed had no SPC need than for those with agreed SPC need.ConclusionsThe proposed expert case review process shows sufficient reliability to be used as a reference standard. Key elements of the case review process (e.g. clear definition of SPC need, standardized review of the patients’ support needs) and possible modifications to simplify the process are discussed.Trial registrationGerman Clinical Trials Register, DRKS00021686, registered 17.12.2020.

Development of a screening tool for the need of specialist palliative care in oncologic inpatients: study protocol for the ScreeningPALL Study

IntroductionA range of referral criteria and scores have been developed in recent years to help with screening for the need of specialist palliative care (SPC) in advanced, incurable cancer patients....

Beyond 9 to 5: Expansion of an Inpatient Specialist Palliative Care Service to 24/7 Onsite Presence.

For seriously ill hospitalized patients with a diagnosis of cancer, there exists a need for specialist palliative care, 24 hours a day, 7 days a week. This article describes the expansion of a palliative care consult service in a metropolitan, dedicated cancer hospital to provide 24/7 specialist palliative care including onsite overnight presence by advanced practice registered nurses and to evaluate the impact of this change on nighttime utilization of the consult service. Inpatient management encounters and outpatient calls were compared before and after the expansion. The onsite availability of a palliative care specialist between midnight and 8 am increased from less than 10% of the time in 2019 to 100% of the time in 2021. The number of inpatient overnight calls and pages increased from a median of 4 to 16, and the number of follow-up visits evaluated increased from a median of 0 to 6. However, the number of overnight palliative care consults and outpatient calls evaluated did not change significantly. Expansion of a hospital-based palliative care service to include 24/7 onsite overnight presence increased patient, family, and night staff access to high-quality palliative care, prompt symptom management, and staff coaching on primary palliative care skills.

Palliative Radiotherapy Delivery by a Dedicated Multidisciplinary Supportive Care Team: Facilitating Early Integration of Palliative Care for Patients With Breast Cancer

Despite level one evidence that early integration of specialist palliative care (SPC) improves quality of life, patients tend to access SPC late in their disease trajectory, if at all. Widespread accessibility of generalist PC competencies has been increasingly provided by dedicated palliative radiotherapy (PRT) clinics, such as the multidisciplinary Palliative Radiation Oncology (PRO) program at our institute. We evaluated the interaction between PRT delivery and need for SPC referral.This secondary analysis of routinely collected health data examined adult female patients with breast cancer, deceased between 04/01/2013 and 03/31/2014. Alberta Cancer Registry, electronic medical records, and Palliative Care Program data were linked. Referrals for PRT and SPC were at the attending physicians' discretion. Clinical data were abstracted including intervals between PRT and SPC consultations. Summary statistics were calculated and independent samples median tests were used for comparison.Of our study cohort of 194 patients, 130 (67.0%) had at least one PRT consult, and 111 (57.2%) were assessed by SPC. First PRT and SPC consultations occurred a median of 11.5 months (interquartile range 3.6-22.1 mos) and 2.8 mos (IQR 0.9 -6.1 mos) before death, respectively. 65.6% (42/64) of those who never had PRT received SPC involvement, versus 53.1% (69/130) of those receiving PRT consult. In the absence of previous PRT, patients had SPC consultation a median of 1.5 mos prior to death (IQR 0.6-4.9 mos); those who had PRT first were seen by SPC a median of 3.3 mos prior (IQR 1.2-6.4 mos) (P = 0.08). Patients seen for PRT outside versus within the PRO clinic had SPC consultation a median of 3.2 mos (IQR 1.2-6.1 mos) versus 5.5 mos prior to death (IQR 2.3-7.1 mos), respectively (P = 0.95).Fewer advanced breast cancer patients who underwent PRT ultimately required SPC consultation, but those who did trended towards referral earlier in their disease course, especially if PRT delivery took place in the setting of a dedicated multidisciplinary team.

Which patients with heart failure should receive specialist palliative care?

AimsWe investigated which patients with heart failure (HF) should receive specialist palliative care (SPC) by first creating a definition of need for SPC in patients hospitalised with HF using patient‐reported outcome measures (PROMs) and then testing this definition using the outcome of days alive and out of hospital (DAOH). We also evaluated which baseline variables predicted need for SPC and whether those with this need received SPC.Methods and resultsPROMs assessing quality of life (QoL), symptoms, and mood were administered at baseline and every 4 months. SPC need was defined as persistently severe impairment of any PROM without improvement (or severe impairment immediately preceding death). We then tested whether need for SPC, so defined, was reflected in DAOH, a measure which combines length of stay, days of hospital re‐admission, and days lost due to death. Of 272 patients recruited, 74 (27%) met the definition of SPC needs. These patients lived one third fewer DAOH than those without SPC need (and less than a quarter of QoL‐adjusted DAOH). A Kansas City Cardiomyopathy Questionnaire (KCCQ) summary score of <29 identified patients who subsequently had SPC needs (area under receiver operating characteristic curve 0.78). Twenty‐four per cent of patients with SPC needs actually received SPC (n = 18).ConclusionsA quarter of patients hospitalised with HF had a need for SPC and were identified by a low KCCQ score on admission. Those with SPC need spent many fewer DAOH and their DAOH were of significantly worse quality. Very few patients with SPC needs accessed SPC services.

Supportive and symptomatic management of amyotrophic lateral sclerosis.

The main aims in the care of individuals with amyotrophic lateral sclerosis (ALS) are to minimize morbidity and maximize quality of life. Although no cure exists for ALS, supportive and symptomatic care provided by a specialist multidisciplinary team can improve survival. The basis for supportive management is shifting from expert consensus guidelines towards an evidence-based approach, which encourages the use of effective treatments and could reduce the risk of harm caused by ineffective or unsafe interventions. For example, respiratory support using noninvasive ventilation has been demonstrated to improve survival and quality of life, whereas evidence supporting other respiratory interventions is insufficient. Increasing evidence implicates a causal role for metabolic dysfunction in ALS, suggesting that optimizing nutrition could improve quality of life and survival. The high incidence of cognitive dysfunction and its impact on prognosis is increasingly recognized, although evidence for effective treatments is lacking. A variety of strategies are used to manage the other physical and psychological symptoms, the majority of which have yet to be thoroughly evaluated. The need for specialist palliative care throughout the disease is increasingly recognized. This Review describes the current approaches to symptomatic and supportive care in ALS and outlines the current guidance and evidence for these strategies.

Specialist palliative care services for adults with advanced, incurable illness in hospital, hospice, or community settings--protocol for a systematic review.

BackgroundSpecialist palliative care (SPC) interventions aim to relieve and prevent suffering in the physical, psychological, social, and spiritual domain. Therefore, SPC is carried out by a multi-professional team with different occupations (e.g., physician, nurse, psychologist, and social worker). Remaining skepticism concerning the need for SPC may be based on the scarcity of high-quality evaluations about the external evidence for SPC. Therefore, we will conduct a systematic review according to Cochrane standards to examine the effects of SPC for adults with advanced illness.Methods/designThe comprehensive systematic literature search will include randomized controlled trials (RCTs) and cluster RCTs. We will search the databases MEDLINE, EMBASE, Cochrane Central Register of Controlled Trials (CENTRAL), and PsycINFO.Patients must be adults suffering from life-limiting diseases. Proxy and caregiver outcomes will not be assessed in order to ensure a clear and well-defined research question for this review. Interventions may be in an in- or outpatient setting, e.g., consulting service, palliative care ward, and palliative outpatient clinic. In line with the multi-dimensional scope of palliative care, the primary outcome is quality of life (QoL). Key secondary outcomes are patients’ symptom burden, place of death and survival, and health economic aspects. Subgroup analysis will assess results according to cancer type, age, early vs not early SPC, site of care, and setting.Analysis will be performed with the current RevMan software. We will use the Cochrane Collaboration risk of bias assessment tool. The quality of evidence will be judged according to the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach.DiscussionThe available evidence will be summarized and discussed to provide a basis for decision-making among health care professionals and policy makers. For SPC, we believe that multi-professional care is of utmost importance. Therefore, single-profession interventions such as physician consultations will not be included. Based on the multi-dimensional scope of palliative care, we chose QoL as the primary outcome, despite an expected heterogeneity among the QoL outcomes. We consider unidimensional endpoints such as “pain” for the physical domain to be inadequate for capturing the true scope of (S)PC (i.e., QoL) as defined by the World Health Organization.Systematic review registrationPROSPERO CRD42015020674Electronic supplementary materialThe online version of this article (doi:10.1186/s13643-015-0121-4) contains supplementary material, which is available to authorized users.

The Need for Palliative Care in Ireland: A Population-Based Estimate of Palliative Care Using Routine Mortality Data, Inclusive of Nonmalignant Conditions

ContextOver the history of palliative care provision in Ireland, services have predominantly provided care to those with cancer. Previous estimates of palliative care need focused primarily on specialist palliative care and included only a limited number of nonmalignant diseases. ObjectivesThe primary aim of this study was to estimate the potential population with generalist and/or specialist palliative care needs in Ireland using routine mortality data inclusive of nonmalignant conditions. The secondary aim was to consider the quality of Irish data available for this population-based estimate. MethodsIrish routine mortality data (2007–2011) were analyzed for malignant and nonmalignant conditions recognized as potentially requiring palliative care input, using specific International Statistical Classification of Diseases and Related Health Problems-10th Revision codes. The method developed by Murtagh et al. was used to give a population-based palliative care needs estimate, encompassing generalist and specialist palliative care need. ResultsDuring the period 2007–2011, there were 141,807 deaths. Eighty percent were from conditions recognized as having associated palliative care needs, with 41,253 (30%) deaths from cancer and 71,226 (50%) deaths from noncancer conditions. The majority of deaths, 81% (91,914), were among those ≥65 years. There was a 13.9% (901) increase in deaths of those ≥85 years. Deaths from dementia increased by 51.3%, with an increase in deaths from neurodegenerative disease (42.8%) and cancer (9.5%). ConclusionFuture palliative care policy decisions in Ireland must consider the rapidly aging Irish population with the accompanying increase in deaths from cancer, dementia, and neurodegenerative disease and associated palliative care need. New models of palliative care may be required to address this.

A SPECIALIST PALLIATIVE CARE SERVICE FOR PARKINSON'S DISEASE: REVIEW OF END OF LIFE OUTCOMES

BackgroundNational guidance supports the need for specialist palliative care (SPC) in Parkinson's disease (PD). Access to SPC remains poor and evidence to support palliative care strategies in PD is scarce.InnovationThe...

PATIENTS WHO DIE IN HOSPITAL—IS THERE AN UNMET PALLIATIVE CARE NEED?

BackgroundThe majority of people in the UK die in hospital and many more die in hospital than are seen by the inpatient specialist palliative care team (SPCT).AimsTo assess the population...

LIVING WITH CHRONIC HEART FAILURE

IntroductionPatients with chronic heart failure (CHF) have a prognosis worse than many cancers. Despite national policy, those receiving specialist palliative care (SPC) remain low. This study provides an updated overview...

Needs of the Charedi Orthodox Jewish Community in Stamford Hill for specialist palliative care

IntroductionThe Charedi Community located in Stamford Hill represent the third largest concentration of strictly Orthodox Jews in the world, with a total population of over 18 000 members. To date...

A point prevalence survey of hospital inpatients to define the proportion with palliation as the primary goal of care and the need for specialist palliative care

The direct burden of people whose goal of care is a palliative approach has not been estimated in the acute care setting. Using a single time point, cross-sectional survey of all inpatient beds, an estimate was generated across a network of three South Australian public hospitals. One in three inpatients had a palliative approach as the goal of care and of these, only one in five had been referred to specialist palliative care services. Those referred were significantly more likely to have cancer and be younger men. Active recognition and documentation that a palliative approach frames the goals of care for this person needs to be incorporated more systematically into clinical practice in the acute care setting. At the same time, triggers for needs-based referral for specialist assessment should be implemented. Specialist palliative care services must also provide direct care for a wider range of patients than just those with cancer.

Symptoms and concerns amongst cancer outpatients: identifying the need for specialist palliative care.

This study aimed to define and prioritize the need for specialist palliative care (SPC) in cancer outpatient clinics. A validated assessment tool, the Symptoms and Concerns Checklist, was used to determine the prevalence and severity of symptoms and concerns. The checklist was completed by 480 outpatients with a cancer diagnosis. Sixty patients from each of eight primary tumour groups (lung, breast, gastrointestinal, gynaecological, urological, head and neck, brain and lymphoma) were recruited. The majority of patients (over 90%) rated 27 of the 29 checklist items, reporting a mean of 10 items as current problems. The influences of disease site and status, demographic factors and treatment on the number and type of symptoms and concerns reported were investigated. The highest number of symptoms and concerns and most severe problems were reported by patients with lung cancer, followed by those with brain tumours; the lowest by those with lymphoma and urological tumours. A high proportion of patients (83%) reported one or more items likely to benefit from SPC intervention. The results of this study suggest an extensive need for better symptom control in all cancer outpatients and in centres where SPC resources are limited, priority could be given to patients attending lung and brain tumour clinics.

Generic palliative care.

There has recently been a move towards generic palliative care with the extension of the aims, as specified by the WHO (1) to patients with non-malignant diagnoses. Trinity Hospice, London, UK, changed their admissions policy to include any patient with a specialist palliative care need from January 1 1995. The contents of this brief report were first presented as a poster at the EAPC Conference, Barcelona, December 1995.