A scoping review of palliative care outcome measures in interstitial lung disease

Interstitial lung disease (ILD) confers a high mortality and symptom burden, substantially impacting quality of life. Studies evaluating palliative care in ILD are rapidly expanding. Uniform outcome measures are crucial to assessing the impact of palliative care in ILD. This scoping review evaluates existing outcome measures in general health-related quality of life (HRQoL), physical health, mental health, social health and advance care planning (ACP) domains in patients with ILD. Articles in English with quantitative assessment of at least one measure of general HRQoL, physical health, mental health, social health or ACP in patients with ILD were included. Searches across three databases yielded 3488 non-duplicate articles. 23 met eligibility criteria and included three randomised controlled trials (RCTs) or secondary analysis of an RCT (13%), three cross-sectional studies or secondary analysis of cross-sectional study (13%), one prospective study (4%) and 16 retrospective studies (70%). Among eligible articles, 25 distinct instruments were identified. Six studies assessed general HRQoL (26%), 16 assessed physical health (70%), 11 assessed mental health (48%), six assessed social health (26%) and 16 assessed ACP (70%). The ability to compare results across studies remains challenging given the heterogeneity in outcome measures. Future work is needed to develop core palliative care outcome measures in ILD.

Síntomas, comorbilidad y estado funcional de los pacientes con enfermedad renal crónica estadio 5 en manejo renal conservador

Objetivos: Determinar la prevalencia e intensidad de síntomas pacientes con Enfermedad Renal Crónica estadio 5 en manejo renal conservador y analizar su asociación con la comorbilidad y el estado funcional. Método: Estudio descriptivo, correlacional, de corte transversal. Para la evaluación de síntomas se utilizó la versión española modificada de la Palliative care Outcome Scale-Symptoms Renal. La comorbilidad fue evaluada con el índice de comorbilidad de Charlson modificado. Para la evaluación del estado funcional y grado de dependencia se utilizó el índice de Barthel. Resultados: 60 pacientes fueron incluidos en este estudio. Más del 50% de los pacientes presentaron debilidad, dolor, dificultad para dormir, poco apetito y problemas en la boca, encontrándose el dolor y la debilidad entre los síntomas más intensos. Las principales condiciones comórbidas fueron: diabetes, cardiopatía isquémica, enfermedad vascular periférica y neoplasias. La media del índice de Barthel fue 88±14,2. No se encontró asociación entre la comorbilidad y la sintomatología (p=0,43). El deterioro del estado funcional se asoció con la carga de síntomas (p=0.001).Conclusiones: Los pacientes con Enfermedad Renal Crónica estadio 5 en manejo renal conservador sufren una elevada carga de síntomas. La debilidad fue síntoma más frecuente en esta población. La carga sintomática se asoció con el deterioro del estado funcional. Futuros estudios sobre el impacto de los síntomas en estos pacientes, así como las intervenciones necesarias para su óptimo manejo deberían ser considerados. Objective: To determine the prevalence and severity of symptoms of patients with Chronic Kidney Disease Stage 5 managed conservately, and their association with the comorbidities and functional status. Methods: A cross-sectional, descriptive, and correlational design was used. Symptom data were collected using the Spanish modified version of Palliative care Outcome Scale-Symptoms Renal. Comorbidity was collected and scored according to the modified Charlson Comorbidity Index. For the evaluation of functional status, the Barthel index was used.Results: 60 patients were included in this study. More than 50% of patients described weakness, pain, difficulty for sleeping, poor appetite and mouth problems. Diabetes, coronary artery disease, and peripheral vascular disease, and tumor, were the main comorbid conditions of these patients. The mean score of Barthel index was 88±14.2. There was no significant correlation between comorbidities and symptoms (p=0.43). There was a significant correlation between symptoms and functional decline (p=0.001).Conclusions: Patients with Chronic Kidney Disease Stage 5 experience a high level of symptom burden. Weakness was the most prevalent symptom in this sample population. Symptom burden correlated with functional decline. Further longitudinal studies are needed that analyse the impact of symptoms and their management in this population.

Monitoring of Palliative Care Symptoms and Concerns in Specialized Palliative Home Care Using an Electronic Version of the Integrated Palliative care Outcome Scale (Palli-MONITOR): protocol for a mixed-methods study

IntroductionOver the last decades, patient-reported outcome (PRO) measures have been developed to better understand the patient’s perspective and enable patient-centred care. In palliative care, the Integrated Palliative care Outcome Scale (IPOS) is recommended as a PRO tool. Its implementation in specialised palliative home care (SPHC) would benefit from an electronic version validated for the setting.Following the Medical Research Council (MRC) guidance, the study Palli-MONITOR is developing (phase 1) and testing the feasibility (phase 2) of implementing the electronic version of IPOS (eIPOS) in the SPHC setting to inform a cluster-randomised phase 3 trial.Methods and analysisPalli-MONITOR is a multicentre, sequential mixed-methods, two-phase development and feasibility study. The study consists of four substudies. In phase 1 (MRC development phase), qualitative patient interviews and focus groups with SPHC professionals are used to identify barriers and facilitators of eIPOS (substudy I). Substudy II tests the equivalence of eIPOS and IPOS in a crossover randomised controlled trial. Phase 2 (MRC feasibility/piloting phase) includes a quasi-experimental study with two control groups (substudy III), and qualitative interviews as well as focus groups to explore the feasibility and acceptability of the developed intervention (substudy IV).Qualitative data will be analysed with thematic analysis following the framework approach. Quantitative analysis uses a two-way intraclass correlation coefficients model for the equivalence testing. Quantitative analysis of the quasi-experimental study will focus on the primary outcomes, recruitment rates and completeness of eIPOS. Secondary outcomes will include intraindividual change in palliative symptoms and concerns, quality of life and symptom burden.Ethics and disseminationApproval of the ethics committee of the Ludwig Maximilian University Munich was received for all study parts. Results and experiences will be presented at congresses and in written form. Additionally, participating SPHC teams will receive summarised results.Trial registration numberNCT03879668.

XGBoost Algorithm Prediction of Critical Care Outcome For Adult Patients Presenting To Emergency Department Using Initial Triage Information (Preprint)

BACKGROUND Emergency department (ED) triage system to classify and prioritize patients at high risk from less urgent continues to be a challenge. OBJECTIVE This study, comprising 80,433 patients, aims to develop a machine learning algorithm prediction model of critical care outcome for adult patients using information collected during ED triage and compare the performance with that of the baseline model using Korean Triage and Acuity Scale (KTAS). METHODS To predict the need of critical care, we used 13 predictors from triage information: age, gender, mode of ED arrival, time interval between onset and ED arrival, reason of ED visit, chief complaints, systolic blood pressure, diastolic blood pressure, pulse rate, respiratory rate, body temperature, oxygen saturation and level of consciousness. The baseline model with KTAS was developed using logistic regression and the machine learning model with 13 variables was generated using extreme gradient boosting (XGB) and deep neural network (DNN) algorithms. The discrimination was measured by area under the receiver operating characteristic curve(AUC). The ability of calibration with Hosmer–Lemeshow test and reclassification with net reclassification index (NRI) were evaluated. The calibration plot and partial dependence plot were used in analysis. RESULTS The AUC of the model with the full set of variables (0.833–0.861) was better than that of the baseline model (0.796). The XGB model of AUC 0.861 (0.848, 0.874, 95% CI) showed a higher discriminative performance than DNN model of 0.833(0.819, 0.848). The XGB and DNN models proved better reclassification than the baseline model with positive net reclassification index. The XGB models was well calibrated (Hosmer-Lemeshow test p>0.05); however, the DNN showed poor calibration power (H-L test p<0.001). We further interpreted non-linear association between variables and critical care prediction. CONCLUSIONS Our study demonstrated that the performance of the XGB model using initial information at ED triage for predicting patients in need of critical care outperformed the conventional model with KTAS.

Changing trends in the incidence of caesarean section after a district hospital became medical college teaching hospital at Karwar, a coastal city in Karnataka-an eleven years retrospective audit

Background: Caesarean section (C-section) delivery has well established risks and adverse consequences. Every health care sector should look into the standards of maternal services it is providing. This audit look into the standards we have been providing at KRIMS Karwar with a comparison to national standards.Methods: This is a retrospective audit conducted by obstetrics and anaesthesia departments at KRIMS Karwar, Karnataka. Objectives were to look into incidence of C-sections, kind of anaesthesia used and maternal mortality. In addition, to look into any change in the obstetric care/outcome after Karwar district general hospital upgraded to a medical college teaching hospital. WHO guidelines for obstetrics care were set as standards. Retrospective data for the period between January 2007 and December 2018 has been collected and analysed.Results: Total number of pregnant women admitted for labour was 13431 with an average of 1221 per year. Proportion of caesarean delivery per hundred labouring women was 16.8 % in 2007 with significant increase to reach 51% in 2012. This has decreased in subsequent years to reach 23.5 in 2018. 99.9% of the C-sections have been done under spinal anaesthesia. There was one death of the mother subjected for C-sections in 2009.Conclusions: Incidence of C-sections was alarmingly high. Implementation of the uniform protocol has significantly reduced the C-sections rate. This reduction could be attributed to the upgrading the Karwar district hospital to a medical college teaching hospital. Protocol based practice will be continued and measures to improve overall maternity services will be implemented as per the WHO guidelines.

Palliative care model in Thailand

Background: Thailand has few hospices and a limited range of palliative care services. Aims: To explore palliative care models in Thailand. Methods: A convergent mixed-methods study design using purposive sampling to select three levels of healthcare services and one religious organisation. Findings: The quantitative data revealed that the structures of palliative care accessibility, referral systems, and continuity of care were in place at all levels of healthcare services. The qualitative data revealed the themes of the structure of palliative care, processes and outcomes. Conclusion: The variety of palliative care structures identified in Thailand are suitable for the context in which palliative care is provided. The problems that need solving are referral systems, patient access to opioids, inequitites in care distribution and medicine dispensing and palliative care outcome evaluation.

Culture in the spotlight—cultural adaptation and content validity of the integrated palliative care outcome scale for dementia: A cognitive interview study

Background: Dementia is a life-limiting disease with high symptom burden. The Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) is the first comprehensive person-centered measure to identify and measure palliative care needs of people with dementia. However, such a measure is missing in the German health care system. Aim: To develop a culturally adapted German version of the IPOS-Dem and determine its content validity as a foundation for comprehensive psychometric testing. Design: Cognitive interview study with intermittent analysis and questionnaire adaptation. Interview guide and coding frame followed thematic analysis according to Willis complemented by Tourangeau’s model of cognitive aspects of survey methodology: comprehension, retrieval, judgment, response. Participants: Purposive sample with professionals ( n = 29) and family carers ( n = 6) of people with advanced dementia in seven nursing homes and person’s own home care in four interview rounds ( n = 11; 10; 7; 7). Results: IPOS-Dem was regarded as comprehensive and accessible. Cultural adaption pertained to issues of comprehension and judgment. Comprehension challenges referred to the person-centered concept of “being affected by” used in the POS-measures. Judgment problems related to persons with limited communication causing challenges in assessment. Conclusion: Most issues of cultural adaptation could be addressed by questionnaire modifications. However, interviews unveiled fundamental challenges for using proxy reported person-centered assessments. Continuous training on how to use the instrument is imperative to integrate the person-centered approach of palliative care into nursing homes as a key provider of generalist palliative care for people with dementia. The refined version is ready for psychometric testing.