Gold Standards Framework Prognostic Indicator Research Articles

1953 Improving access to community palliative care by raising awareness of services, indications for referral and referral pathways

Abstract Introduction 40% of 1056 patients discharged from our acute geriatrics ward met Gold Standards Framework (GSF) Prognostic Indicator Guidance for Recognition of Patients approaching End of Life (EOL). 92% were not referred to Community Palliative Care (CPC) services, meaning patients’ needs were not fully met and other services over-stretched. This project aimed to achieve a 10% reduction in missed referrals. Methods Highlighting the missed referral rate enabled engagement of key stakeholders including ward and palliative care multidisciplinary teams. This 12-month project comprised four PDSA Cycles: 1. Raising awareness of GSF and CPC through ward-based teaching; 2. Development of posters outlining referral criteria and pathways; 3. Hospital-wide survey of doctors’ understanding of treating patients approaching EOL, with real-time feedback on GSF and CPC; 4. Formal departmental and year-group teaching sessions. The outcome measure was the percentage of patients meeting GSF criteria who were not referred to CPC, as determined by retrospective analysis of discharge letters. Readmission rate was calculated as a marker of quality of life (QoL) and to assess the impact of missed referrals on the Trust. Results Interventions led to a sustained reduction in missed referrals (72% from 92%). Certain diagnoses are more readily referred, metastatic malignancy for example, 9x more frequently than advanced Parkinson’s. Patients meeting criteria averaged 3 admissions in the preceding year (compared to 1.7). Of those meeting criteria and still alive, patients not referred averaged 1 re-admission within 6 months compared to 0.3 when referred. Conclusions Missed CPC referrals impact patient QoL and increase the burden on acute inpatient services. Significant benefits could be seen if these findings are extended to other inpatient wards. There is also a need for education about the palliative stage of non-malignant diseases such as Dementia and Parkinson’s. Future steps include technology-based active screening of inpatients to facilitate referrals.

Uptake of Clinical Prognostic Tools in COPD Exacerbations Requiring Hospitalisation

Clinical prognostic tools are used to objectively predict outcomes in many fields of medicine. Whilst over 400 have been developed for use in chronic obstructive pulmonary disease (COPD), only a minority have undergone full external validation and just one, the DECAF score, has undergone an implementation study supporting use in clinical practice. Little is known about how such tools are used in the UK. We distributed surveys at two time points, in 2017 and 2019, to hospitals included in the Royal College of Physicians of London national COPD secondary care audit program. The survey assessed the use of prognostic tools in routine care of hospitalized COPD patients. Hospital response rates were 71/196 in 2017 and 72/196 in 2019. The use of the DECAF and PEARL scores more than doubled in decisions about unsupported discharge (7%–15.3%), admission avoidance (8.1%–17%) and readmission avoidance (4.8%–13.1%); it more than tripled (8.8%–27.8%) in decisions around hospital-at-home or early supported discharge schemes. In other areas, routine use of clinical prognostic tools was uncommon. In palliative care decisions, the use of the Gold Standards Framework Prognostic Indicator Guidance fell (5.6%–1.4%). In 2017, 43.7% of hospitals used at least one clinical prognostic tool in routine COPD care, increasing to 52.1% in 2019. Such tools can help challenge prognostic pessimism and improve care. To integrate these further into routine clinical care, future research should explore current barriers to their use and focus on implementation studies. Supplemental data for this article is available online at https://dx.doi.org/10.1080/15412555.2021.1959540

The need for palliative and support care services for heart failure patients in the community.

Palliative care is a care option considered appropriate for those with heart failure, but is uncommon partially due to a lack of timely identification of those needing palliative care. A standard mechanism that triggers which heart failure patients should receive palliative care is not available. The Gold Standards Framework (GSF) identifies those needing palliative care but has not been investigated with heart failure patients. To describe palliative care provided in the community and determine whether the GSF can identify heart failure patients in need of palliative care. Descriptive study. A total of 252 heart failure patients in the community completed a demographic characteristics questionnaire, the Edmonton symptom assessment scale-revised and the Minnesota living with heart failure questionnaire. Clinical data were collected from the medical chart and the primary physician completed the GSF prognostic indicator guidance. Participants had a mean age of 76.9 years (standard deviation 10.9), most at New York Heart Association level III (n=152, 60%). Fewer than half received pain medications (n=76, 30%), anxiolytics (n=35, 14%), antidepressants (n=64, 25%) or sleep medications (n=65, 26%). Eight patients spoke with a psychologist or psychologist (3%). One had an advanced directive and 16 (6%) had a record of discussions with their family caregivers. Three (1%) had end-of-life discussions with their healthcare providers. Most healthcare providers responded 'no' to the 'surprise question' (n=160, 63%). Sensitivity and specificity of the gold standards framework was poor. Few community dwelling heart failure patients received most aspects of palliative care. The gold standards framework was not a good indicator of those who should receive palliative care.

The utility of a shortened palliative care screening tool to predict death within 12\u2009months \u2013 a prospective observational study in two south African hospitals with a high HIV burden

BackgroundTimely identification of people who are at risk of dying is an important first component of end-of-life care. Clinicians often fail to identify such patients, thus trigger tools have been developed to assist in this process. We aimed to evaluate the performance of a identification tool (based on the Gold Standards Framework Prognostic Indicator Guidance) to predict death at 12 months in a population of hospitalised patients in South Africa.MethodsPatients admitted to the acute medical services in two public hospitals in Cape Town, South Africa were enrolled in a prospective observational study. Demographic data were collected from patients and patient notes. Patients were assessed within two days of admission by two trained clinicians who were not the primary care givers, using the identification tool. Outcome mortality data were obtained from patient folders, the hospital electronic patient management system and the Western Cape Provincial death registry which links a unique patient identification number with national death certificate records and system wide electronic records.Results822 patients (median age of 52 years), admitted with a variety of medical conditions were assessed during their admission. 22% of the cohort were HIV-infected. 218 patients were identified using the screening tool as being in the last year of their lives. Mortality in this group was 56% at 12 months, compared with 7% for those not meeting any criteria. The specific indicator component of the tool performed best in predicting death in both HIV-infected and HIV-uninfected patients, with a sensitivity of 74% (68–81%), specificity of 85% (83–88%), a positive predictive value of 56% (49–63%) and a negative predictive value of 93% (91–95%). The hazard ratio of 12-month mortality for those identified vs not was 11.52 (7.87–16.9, p < 0.001).ConclusionsThe identification tool is suitable for use in hospitals in low-middle income country setting that have both a high communicable and non-communicable disease burden amongst young patients, the majority under age 60.

COPD patients in need of palliative care: Identification after hospitalization through the surprise question.

Currently, few patients suffering from chronic obstructive pulmonary disease (COPD) who might benefit from a palliative care approach are referred to a palliative care team. Tools to identify patients eligible for a palliative care approach have been found to be difficult to apply in daily practice. Therefore, there is need for a simple and easily applicable tool to identify those patients who would benefit from referral to a palliative care team. The aim of this study was to determine if the surprise question (SQ) “Would I be surprised if this patient dies within 12 months?” in a subset of recently hospitalized COPD patients identifies those subjects. Recently hospitalized COPD patients were included, and the answer to the SQ was provided by the treating pulmonologist. The gold standards framework (GSF) prognostic indicator guidance was regarded as the gold standard test and was assessed for each patient. Sensitivity, specificity, and negative and positive predictive values were calculated to determine the accuracy of the SQ plus recent hospitalization compared to the variables of the GSF. A total of 93 patients were analyzed. In 35 patients (38%), the answer to the SQ was “not surprised”; 78 patients (84%) met ≥1 criteria of the GSF (15 (16%) did not meet any criteria). Specificity and positive predictive value for the SQ were both 100% ((78.2–100) and (87.7–100), respectively). Sensitivity was 44.9% (33.7–56.5) and negative predictive value was 25.9% (22.2–29.9). The “not surprised” group fulfilled significantly more GSF criteria. The SQ after recent hospitalization for COPD has a very high specificity compared to a standardized tool and is therefore a useful tool for the quick identification of patients who are most likely to benefit from palliative care. However, this method doesn’t identify all patients who are eligible for referral to palliative care.

Effects of a nurse-led post-discharge advance care planning programme for community-dwelling patients nearing the end of life and their family members: A randomised controlled trial

BackgroundAlthough evidence increasingly demonstrates the effects of advance care planning, the relevant studies are of questionable quality, and lack consensus regarding when and with whom to initiate the conversation. ObjectiveTo examine the effects of a structured, nurse-led post-discharge advance care planning programme on congruence between the end-of-life care preferences of the patient and family members, decisional conflicts and the documentation of care preferences. DesignA two-arm parallel-group randomised controlled trial. ParticipantsA total of 230 dyads comprising community-dwelling patients screened by the Gold Standards Framework Prognostic Indicator Guidance and their designated family members. MethodsPatients in the experimental group participated in a structured advance care planning programme administered by a trained nurse during three weekly home visits following hospital discharge. In contrast, the post-discharge home visits provided to the control group focused on self-care management as attention control. The study outcomes were the dyadic congruence regarding end-of-life care preferences, the patients’ level of decisional conflict regarding end-of-life decision-making and the documentation of these preferences at baseline and 1 and 6 months after enrolment. Generalised estimating equation models were used to compare changes in the outcomes between the groups across time. ResultsAt baseline, few participants had ever heard of advance directives (12/460, 2.6%) and few patients had ever discussed end-of-life issues with family members (34/230, 14.8%). After six months, the experimental group exhibited a greater increase in dyadic congruence regarding various end-of-life care preferences than the control group (Ps < 0.04). The experimental group also exhibited a greater improvement in decisional conflict at 6 months relative to the control group (P = 0.003). However, the groups did not differ significantly in terms of changes in any outcomes after one month. The experimental group had significantly higher rates of completion of advance directives and electronic medical record documentation of do-not-attempt cardiopulmonary resuscitation orders than the control group. ConclusionsThis study showed that a nurse-led structured advance care planning programme could effectively improve dyadic congruence regarding end-of-life care preferences, reduce patients’ decisional conflict and increase the documentation of care preferences. The findings underscored the importance of supporting nurses to introduce advance care planning at an earlier time that enable patients with sufficient time to contemplate end-of-life issues, empower patients to deliberate their choices and engage patients and their family members in open discussion.

Prognostic variables and scores identifying the end of life in COPD: a systematic review.

IntroductionCOPD is a major cause of mortality, and the unpredictable trajectory of the disease can bring challenges to end-of-life care. We aimed to investigate known prognostic variables and scores that predict prognosis in COPD in a systematic literature review, specifically including variables that contribute to risk assessment of patients for death within 12 months.MethodsWe conducted a systematic review on prognostic variables, multivariate score or models for COPD. Ovid MEDLINE, EMBASE, the Cochrane database, Cochrane CENTRAL, DARE and CINAHL were searched up to May 1, 2016.ResultsA total of 5,276 abstracts were screened, leading to 516 full-text reviews, and 10 met the inclusion criteria. No multivariable indices were developed with the specific aim of predicting all-cause mortality in stable COPD within 12 months. Only nine indices were identified from four studies, which had been validated for this time period. Tools developed using expert knowledge were also identified, including the Gold Standards Framework Prognostic Indicator Guidance, the RADboud Indicators of Palliative Care Needs, the Supportive and Palliative Care Indicators Tool and the Necesidades Paliativas program tool.ConclusionA number of variables contributing to the prediction of all-cause mortality in COPD were identified. However, there are very few studies that are designed to assess, or report, the prediction of mortality at or less than 12 months. The quality of evidence remains low, such that no single variable or multivariable score can currently be recommended.

45 Frailty at Discharge is a Marker of End-of-Life following Admission with Acute Coronary Syndrome or Acute Heart Failure

Background Patients with advanced heart disease who are approaching end-of-life (EoL) rarely receive palliative care. This study evaluated the utility of the Canadian Study of Health and Ageing Clinical Frailty Scale (CFS) in predicting 12 month mortality in patients discharged from hospital following acute coronary syndrome (ACS) or acute heart failure (AHF). Methods 188 unselected consecutive patients admitted to an acute cardiology ward over a 8 week period with either ACS or AHF were assessed prior to discharge using a number of prognostic tools including CFS, GRACE (for ACS), EFFECT (for AHF) and the Gold Standards Framework (GSF) prognostic indicator guide. Unscheduled hospital admissions and all-cause mortality were then documented over a 12 month period of follow-up. Results The presence of frailty (CFS 5–7) had a high sensitivity (83%) and specificity (79%) in predicting 12 month mortality for both ACS and AHF patients. Compared to GSF, the CFS was more sensitive and had higher positive predicting value for 12-month mortality (C–statistic 0.81). The addition of the GRACE or EFFECT score to CFS improved its predictive value only marginally. (C-statistic 0.83). No clear relationship was identified between frailty and risk of unscheduled hospital admissions during follow-up. Conclusion CFS could be used in combination with a disease-specific clinical score (GRACE or EFFECT) at time of discharge from hospital to identify ACS and AHF patients at increased risk of death within 12 months and who may therefore be suitable for end-of-life care.

Can we predict which hospitalised patients are in their last year of life? A prospective cross-sectional study of the Gold Standards Framework Prognostic Indicator Guidance as a screening tool in the acute hospital setting

Background: Screening to identify hospital inpatients with a short life expectancy may be a way to improve care towards the end of life. The Gold Standards Framework Prognostic Indicator Guidance is a screening tool that has recently been advocated for use in the hospital setting. Aim: To assess the clinical utility of the Gold Standards Framework Prognostic Indicator Guidance as a screening tool in an acute hospital setting. Main outcome measures: Mortality at 6 and 12 months and sensitivity, specificity and predictive value of the Gold Standards Framework Prognostic Indicator Guidance at 1 year. Design, setting and participants: Prospective cross-sectional study of 501 adult inpatients in a tertiary New Zealand teaching hospital screened utilising the Gold Standards Framework Prognostic Indicator Guidance. Results: A total of 99 patients were identified as meeting at least one of the Gold Standards Framework Prognostic Indicator Guidance triggers. In this group, 6-month mortality was 56.6% and 12-month mortality was 67.7% compared with 5.2% and 10%, respectively, for those not identified as meeting the criteria. The sensitivity and specificity of the Gold Standards Framework Prognostic Indicator Guidance at 1 year were 62.6% and 91.9%, respectively, with a positive predictive value of 67.7% and a negative predictive value of 90.0%. Conclusion: The sensitivity, specificity and predictive values of the Gold Standards Framework Prognostic Indicator Guidance in this study are comparable to, or better than, results of studies identifying patients with a limited life expectancy in particular disease states (e.g. heart failure and renal failure). Screening utilising the Gold Standards Framework Prognostic Indicator Guidance in the acute setting could be the first step towards implementing a more systematic way of addressing patient need – both current unrecognised and future anticipated – thereby improving outcomes for this population.

DYING IN HOSPITAL-IS THERE AN UNMET PALLIATIVE CARE NEED FOR PATIENTS WHO DIE WITHIN 48 HOURS OF ADMISSION?

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...

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...

Palliative care for frail older people: A cross-sectional survey of patients at two hospitals in England

BackgroundThe majority of deaths in the UK occur in acute hospitals, and older people have the highest hospital death rates. Improved palliative care for older people has been identified as an international priority, yet little is known about the profile of older patients with palliative care needs in hospitals.ObjectiveTo describe the profile of older hospital inpatients (≥85 years), and to explore the prevalence and nature of palliative care needs among this group.MethodsA cross-sectional survey of palliative care need in older people was undertaken in two UK acute hospitals. Hospital case notes were examined for evidence of palliative care need according to Gold Standards Framework (GSF) prognostic indicator criteria. Patients (or consultees) completed assessments of palliative care need.SubjectsData were collected for 654 consenting patients/consultees. This paper describes data from 110 patients aged ≥85 years.ResultsForty per cent of the older patients were identified as having palliative care needs according to GSF criteria. Frailty was the most common indicator of palliative care need (16.7%). The most common reason for admission to hospital was general frailty (25.5%).ConclusionsWhile this study is limited by its small sample size, the results suggest that older people with frailty conditions constitute a substantial proportion of hospital inpatients with palliative care needs. However, it is unclear whether a specialist palliative care framework is the most appropriate model for this group. The care provided to older people at the end of life may best be provided by generalists such as geriatricians, as part of a comprehensive generalist-led palliative care framework.

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

BackgroundImproving the provision of palliative and end-of-life care is a priority for the NHS. Ensuring an appropriately managed ‘transition’ to a palliative approach for care when patients are likely to be entering the last year of life is central to current policy. Acute hospitals represent a significant site of palliative care delivery and specific guidance has been published regarding the management of palliative care transitions within this setting.Aims(1) to explore how transitions to a palliative care approach are managed and experienced in acute hospitals and to identify best practice from the perspective of clinicians and service users; (2) to examine the extent of potentially avoidable hospital admissions amongst hospital inpatients with palliative care needs.DesignA mixed-methods design was adopted in two hospitals in England, serving diverse patient populations. Methods included (1) two systematic reviews; (2) focus groups and interviews with 58 health-care professionals to explore barriers to, and facilitators of, palliative care transitions in hospital; (3) a hospital inpatient survey examining palliative care needs and aspects of management including a self-/proxy-completed questionnaire, a survey of medical and nursing staff and a case note review; (4) in-depth interviews with 15 patients with palliative care needs; (5) a retrospective case note review of all inpatients present in the hospital at the time of the survey who had died within the subsequent 12 months; and (6) focus groups with 83 key decision-makers to explore the implications of the findings for service delivery and policy.ResultsOf the 514 patients in the inpatient survey sample, just over one-third (n = 185, 36.0%) met one or more of the Gold Standards Framework (GSF) prognostic indicator criteria for palliative care needs. The most common GSF prognostic indicator was frailty, with almost one-third of patients (27%) meeting this criteria. Agreement between medical and nursing staff and the GSF with respect to identifying patients with palliative care needs was poor. In focus groups, health professionals reported difficulties in recognising that a patient had entered the last 12 months of life. In-depth interviews with patients found that many of those interviewed were unaware of their prognosis and showed little insight into what they could expect from the trajectory of their disease. The retrospective case note review found that 35 (7.2%) admissions were potentially avoidable. The potential annual cost saving across both hospitals of preventing these admissions was approximately £5.3M. However, a 2- or 3-day reduction in length of stay for these admissions would result in an annual cost saving of £21.6M or £32.4M respectively.ConclusionsPatients with palliative care needs represent a significant proportion of the hospital inpatient population. There is a significant gap between NHS policy regarding palliative and end-of-life care management in acute hospitals in England and current practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

Palliative care need and management in the acute hospital setting: a census of one New Zealand Hospital

BackgroundImproving palliative care management in acute hospital settings has been identified as a priority internationally. The aim of this study was to establish the proportion of inpatients within one acute hospital in New Zealand who meet prognostic criteria for palliative care need and explore key aspects of their management.MethodsA prospective survey of adult hospital inpatients (n = 501) was undertaken. Case notes were examined for evidence that the patient might be in their last year of life according to Gold Standards Framework (GSF) prognostic indicator criteria. For patients who met GSF criteria, clinical and socio-demographic information were recorded.ResultsNinety-nine inpatients met GSF criteria, representing 19.8% of the total census population. The patients’ average age was 70 years; 47% had a primary diagnosis of cancer. Two thirds had died within 6 months of their admission. Seventy-eight of the 99 cases demonstrated evidence that a palliative approach to care had been adopted; however documentation of discussion about goals of care was very limited and only one patient had evidence of an advance care plan.ConclusionOne fifth of hospital inpatients met criteria for palliative care need, the majority of whom were aged >70 years. Whilst over three quarters were concluded to be receiving care in line with a palliative care approach, very little documented evidence of discussion with patients and families regarding end of life issues was evident. Future research needs to explore how best to support ‘generalist’ palliative care providers in initiating, and appropriately recording, such discussions.

Extent of palliative care need in the acute hospital setting: A survey of two acute hospitals in the UK

Background: In common with international health policy, The End of Life Care Strategy for England has highlighted the delivery of high quality palliative care in the acute hospital setting as an area of priority. Aim: The aim of this study was to explore the extent of palliative care need in the acute hospital setting, and to explore agreement between different sources in the identification of patients with palliative care need. Design: A cross-sectional survey of palliative care need was undertaken in two UK acute hospitals. Hospital case notes were examined for evidence of palliative care need according to Gold Standards Framework (GSF) prognostic indicator criteria. Medical and nursing staff were asked to identify patients with palliative care needs. Patients (or consultees) completed assessments of palliative care need. Participants: Of a total in-patient population of 1359, complete datasets were collected for 514 patients/consultees. Results: 36.0% of patients were identified as having palliative care needs according to GSF criteria. Medical staff identified 15.5% of patients as having palliative care needs, and nursing staff 17.4% of patients. Patient self-report data indicated that 83.2% of patients meeting GSF criteria had palliative care needs. Conclusion: The results reveal that according to the GSF prognostic guide, over a third of hospital in-patients meet the criteria for palliative care need. Consensus between medical staff, nursing staff and the GSF was poor regarding the identification of patients with palliative care needs. This has significant implications for patient care, and draws into question the utility of the GSF in the hospital setting.

Identifying community based chronic heart failure patients in the last year of life: a comparison of the Gold Standards Framework Prognostic Indicator Guide and the Seattle Heart Failure Model

ObjectiveTo assess the clinical utility of the Gold Standards Framework Prognostic Indicator Guide (GSF) and the Seattle Heart Failure Model (SHF) to identify patients with chronic heart failure (CHF) in...

Determining & prioritising key factors of care needs for patients & carers known to Hospice@Home

IntroductionEnsuring optimal use of resources can be very challenging for Hospice at Home services frequently faced with deciding which patient and carer situations at the very end of life are...

Identifying end of life needs in acute cardiac patients: a comparison of prognostic tools

Introduction and aimsIdentifying patients with non-malignant disease in the hospital setting who might benefit from palliative and supportive care is challenging. There is little research in this area. A screening...

The GSF Prognostic Indicator Guidance

One of the major barriers to the delivery of good-quality end-of-life care is the fact that people who are approaching the end of their lives are not identified at an early enough stage. Consequently, they and their families are not provided with the support they need. This may lead to poor care provision, inappropriate hospital admissions, preventable suffering or crisis events. This is a particular problem for patients with non-malignant diseases, frailty and dementia as the illness trajectories of such conditions are not as predictable as those of malignant disease. This article provides an overview of the Gold Standards Framework (GSF) Prognostic Indicator Guidance. This guidance was developed by the GSF Central Team to assist generalist clinicians with early identification of people approaching the end stages of their disease process. The guidance provides useful prompts or ‘triggers’ to healthcare professionals, making them aware that supportive measures for end-of-life care should be initiated promptly.