Complexity of needs in amyotrophic lateral sclerosis (ALS) patients using the ENP-E scale in the north-eastern region of Spain.

OBJECTIVES: This study aimed to explore the clinical characteristics of amyotrophic lateral sclerosis (ALS) patients in Spain's north-eastern region, their inclusion in chronic care programmes, and their psychosocial and spiritual needs (PSNs). METHODS: A longitudinal descriptive study in adult patients with ALS. We analyzed clinical variables and participation in chronicity and PSNs assessment using the tool Psychosocial and Spiritual Needs Evaluation scale in end-of-life patients (ENP-E scale). RESULTS: 81 patients (average age 65.6 ± 11.7) were studied. At the study's outset, 29.7% employed non-invasive ventilation (NIV), increasing to 51.9% by its conclusion. Initial percutaneous endoscopic gastrostomy (PEG) utilization was 14.8%, rising to 35.85%. Chronic care programme participation was as follows: home care (24.7% initially, 50.6% end), palliative care (16% initially, 40.7% end), case management (13.6% initially, 50.6% end), and advance care planning registration (6.2% initially, 35.8% end). At study start, 47.8% of patients (n = 46) showed moderate-to-severe complexity in PSNs assessment using the ENP-E scale, without showing differences in age, sex, and time of evolution; whereas, on the evolutionary analysis, it was 75% (n = 24). A higher evolutionary complexity was observed in males <60 and >70 years, with no PEG and evolution of ALS of <2 and ≥5 years, and not included in chronicity programmes. When assessing concerns, physical pain and family aspects stand out in all measurements. Forty-eight percent of patients at study start and 71% at end of study showed external signs of emotional distress. SIGNIFICANCE OF RESULTS: Most ALS patients showed a high degree of complexity and were not integrated in chronicity programmes. A "care path" is proposed to integrate ALS patients in these programmes and systematically assess their needs.

Prevalencia y características clínicas del dolor en pacientes con enfermedad crónica avanzada / Prevalence and clinical characteristics of pain in patients with advanced chronic disease

Objetivos: Determinar la prevalencia y las características clínicas del dolor en pacientes con enfermedad crónica avanzada, e identificar la frecuencia del dolor irruptivo. Diseño: Estudio observacional, descriptivo y transversal. Emplazamiento: Tres equipos de atención primaria y un hospital de cuidados intermedios. Participantes: Se seleccionaron todos los pacientes con enfermedad crónica avanzada. Mediciones principales: Se realizó una entrevista semiestructurada para recoger variables demográficas, clínicas y específicas de dolor mediante escalas validadas. Se registraron la ubicación (domicilio, residencia u hospital) y la trayectoria de cronicidad avanzada (insuficiencia de órgano, enfermedad oncológica, demencia o multimorbilidad). Se valoró la presencia de dolor según la Brief Pain Inventory (BPI) y, en los casos de demencia invalidante, según la Pain Assessment in Advanced Dementia (PAINAD). Análisis estadístico descriptivo y comparativo entre variables utilizando el programa R. Resultados: Se incluyeron 223 pacientes (60,4% de los seleccionados). Prevalencia del dolor: 83,9% (n=187), sin diferencias según la ubicación ni según la trayectoria. Diferencias significativas en la intensidad del dolor según la ubicación (p=0,0046) (moderado-severo en domicilio, moderado en hospital y leve en residencia) y según la trayectoria (p<0,0001) (dolor moderado-severo en insuficiencia de órgano y multimorbilidad, moderado en cáncer y leve en demencia). Se observó impacto funcional por dolor leve-moderado, impacto emocional severo en el 41,5% de los pacientes (n=51) y dolor irruptivo en el 8,6% (n=13). Conclusiones: El dolor debe ser siempre explorado y evaluado en pacientes con cronicidad avanzada, ya que fue muy prevalente en todas las ubicaciones y trayectorias, especialmente intenso en la insuficiencia de órgano y en la multimorbilidad a domicilio. Apareció dolor irruptivo en trayectorias no oncológicas.(AU)

Objectives: Determine pain prevalence and clinical characteristics in patients with advanced chronic disease and identify breakthrough pain frequency. Design: Observational, descriptive, cross-sectional study. Location: Three primary care teams and one intermediate care hospital. Participants: All patients with advanced chronic disease. Main measurements: A semi-structured interview was performed to collect demographic, clinical, and specific variables of pain using validated scales. Patient location (home, nursing home or hospital) and advanced chronicity trajectory (organ failure, oncological disease, dementia, or multimorbidity) were recorded. Pain was assessed based on the Brief Pain Inventory (BPI) and, in cases of disabling dementia, using the Pain Assessment in Advanced Dementia (PAINAD). A statistical descriptive, comparative analysis between variables was performed using the R software. Results: Of all patients selected, 223 (60.4%) were included. Prevalence of pain: 83.9% (n=187), with no differences based on location or trajectory. Significant differences in pain intensity based on location (P=.0046) (moderate-severe in patients at home, moderate in hospital patients, and mild in nursing home patients) and on trajectory (P<.0001) (moderate-severe in patients with organ failure and multimorbidity, moderate in patients with cancer, and mild in patients with dementia). Global functional impact of pain was mild-moderate, emotional impact was severe in 41.5% of patients (n=51), and breakthrough pain was observed in 8.6% (n=13). Conclusions: Pain must always be explored and assessed in patients with advanced chronicity, since it was highly prevalent in all locations and trajectories, being particularly intense in patients at home with organ failure and multimorbidity. Breakthrough pain was found in non-oncological trajectories.(AU)

The prognostic value of the NECPAL instrument, Palliative Prognostic Index, and PROFUND index in elderly residents of nursing homes with advanced chronic condition.

BACKGROUND: It is essential to assess the need for palliative care and the life prognosis of elderly nursing home residents with an advanced chronic condition, and the NECPAL ICO-CCOMS©4.0 prognostic instrument may be adequate for both purposes. The objective of this study was to examine the predictive capacity of NECPAL, the Palliative Prognosis Index, and the PROFUND index in elderly residents with advanced chronic condition with and without dementia, comparing their results at different time points. METHODS: This prospective observational study was undertaken in eight nursing homes, following the survival of 146 residents with advanced chronic condition (46.6% with dementia) at 3, 6, 12, and 24 months. The capacity of the three instruments to predict mortality was evaluated by calculating the area under the receiver operating characteristic curve (AUC), with 95% confidence interval, for the global population and separately for residents with and without dementia. RESULTS: The mean age of residents was 84.63 years (± 8.989 yrs); 67.8% were female. The highest predictive capacity was found for PROFUND at 3 months (95%CI: 0.526-0.756; p = 0.016), for PROFUND and NECPAL at 12 months (non-significant; AUC > 0.5), and NECPAL at 24 months (close-to-significant (AUC = 0.624; 95% CI: 0.499-0.750; p = 0.053). The highest capacity at 12 months was obtained using PROFUND in residents with dementia (AUC = 0.698; 95%CI: 0.566-0.829; p = 0.003) and NECPAL in residents without dementia (non-significant; AUC = 0.649; 95%CI: 0.432-0.867; p = 0.178). Significant differences in AUC values were observed between PROFUND at 12 (p = 0.017) and 24 (p = 0.028) months. CONCLUSIONS: PROFUND offers the most accurate prediction of survival in elderly care home residents with advanced chronic condition overall and in those with dementia, especially over the short term, whereas NECPAL ICO-CCOMS©4.0 appears to be the most useful to predict the long-term survival of residents without dementia. These results support early evaluation of the need for palliative care in elderly care home residents with advanced chronic condition.

[Prevalence and clinical characteristics of pain in patients with advanced chronic disease]. / Prevalencia y características clínicas del dolor en pacientes con enfermedad crónica avanzada.

OBJECTIVES: Determine pain prevalence and clinical characteristics in patients with advanced chronic disease and identify breakthrough pain frequency. DESIGN: Observational, descriptive, cross-sectional study. LOCATION: Three primary care teams and one intermediate care hospital. PARTICIPANTS: All patients with advanced chronic disease. MAIN MEASUREMENTS: A semi-structured interview was performed to collect demographic, clinical, and specific variables of pain using validated scales. Patient location (home, nursing home or hospital) and advanced chronicity trajectory (organ failure, oncological disease, dementia, or multimorbidity) were recorded. Pain was assessed based on the Brief Pain Inventory (BPI) and, in cases of disabling dementia, using the Pain Assessment in Advanced Dementia (PAINAD). A statistical descriptive, comparative analysis between variables was performed using the R software. RESULTS: Of all patients selected, 223 (60.4%) were included. Prevalence of pain: 83.9% (n=187), with no differences based on location or trajectory. Significant differences in pain intensity based on location (P=.0046) (moderate-severe in patients at home, moderate in hospital patients, and mild in nursing home patients) and on trajectory (P<.0001) (moderate-severe in patients with organ failure and multimorbidity, moderate in patients with cancer, and mild in patients with dementia). Global functional impact of pain was mild-moderate, emotional impact was severe in 41.5% of patients (n=51), and breakthrough pain was observed in 8.6% (n=13). CONCLUSIONS: Pain must always be explored and assessed in patients with advanced chronicity, since it was highly prevalent in all locations and trajectories, being particularly intense in patients at home with organ failure and multimorbidity. Breakthrough pain was found in non-oncological trajectories.

New embracing approach for better advanced cancer patient comprehensive care / Nuevo enfoque para mejorar el cuidado integral del paciente con cáncer avanzado

Abstract Introduction: Cancer patients have multiple and complex needs. Argentina has a medium-high cancer in cidence. Only 14% of patients with palliative care needs have access to specialized services. This study aimed to develop and implement an integrated cancer care model in three hospitals and at home based care level. Methods: The NECPAL2 was a prospective longitudi nal observational study. We report a two-year health care intervention and its implementation process. The NECPAL tool was used as a screening instrument. Adult cancer patients were recruited and assessed. NECPAL+ patients are those with a positive surprise question - Would you be surprised if this patient dies in the next year? (no)- and, at least one indicator of advanced disease. Patients were reassessed periodically with validated scales. Feedback was given for clinical case management. The project was developed in three consecutive stages and six phases. Data were collected for statistical analysis with a prognosis and palliative approach. Results: 2104 cancer patients screened. 681 were NECPAL+. 21% of them presented more than six pa rameters of severity or progression. The mean general survival was 8 months. 61.9% died within the follow-up period. Survival predictors were identified. Over 65% of patients were referred to palliative care; 10% received home-care. Areas for improvement were recognized. An implementation document was created. Discussion: This study showed that a predictive model is feasible, improving chances for timely referral and needs approach. It provided the basis for further implementation research and should encourage policy makers for embracing palliative model development for better cancer patient care.

Resumen Introducción: Los pacientes con cáncer tienen necesi dades múltiples y complejas que se deben atender opor tunamente en los distintos niveles del sistema sanitario. Argentina tiene una incidencia de cáncer media-alta pero solo el 14% de los pacientes acceden a cuidados paliativos. El objetivo de este estudio fue desarrollar e implementar un modelo multicéntrico de atención integral del paciente con cáncer avanzado. Métodos: El NECPAL2 fue un estudio observacional longitudinal prospectivo de dos años. Se evaluaron pacientes adultos con cáncer avanzado. Se utilizó la herramienta NECPAL como instrumento de cribado. Los pacientes NECPAL+ son aquellos con la pregunta sorpre sa positiva -¿Le sorprendería que este paciente muriera en el próximo año? (no)- y, al menos, un indicador de enfermedad avanzada. Los pacientes fueron reevaluados periódicamente con escalas validadas para la gestión clínica de casos. El proyecto se desarrolló en tres etapas consecutivas y seis fases. Se analizaron los resultados con un enfoque pronóstico y paliativo. Resultados: Se identificaron 2104 pacientes oncológicos, 681 eran NECPAL+. El 21% presentaba más de seis paráme tros de gravedad o progresión. Más del 60% de los pacientes NECPAL+ tenían una evaluación inicial multidimensional completa y documentada. La supervivencia media general fue de 8 meses. El 61.9% falleció durante el periodo de seguimiento. Se identificaron predictores de supervivencia. Más del 65% fueron derivados a cuidados paliativos; el 10% recibió atención domiciliaria. Se reconocieron áreas de mejora. Se creó un documento de recomendaciones. Discusión: Este estudio demostró que un modelo predictivo multicéntrico y en varios niveles es factible y mejora las posibilidades de derivación oportuna para atención paliativa. A pesar de las limitaciones este es tudio puede inspirar políticas para mejorar la atención integral de pacientes con cáncer avanzado.

New embracing approach for better advanced cancer patient comprehensive care.

INTRODUCTION: Cancer patients have multiple and complex needs. Argentina has a medium-high cancer incidence. Only 14% of patients with palliative care needs have access to specialized services. This study aimed to develop and implement an integrated cancer care model in three hospitals and at home based care level. METHODS: The NECPAL2 was a prospective longitudinal observational study. We report a two-year healthcare intervention and its implementation process. The NECPAL tool was used as a screening instrument. Adult cancer patients were recruited and assessed. NECPAL+ patients are those with a positive surprise question - Would you be surprised if this patient dies in the next year? (no)- and, at least one indicator of advanced disease. Patients were reassessed periodically with validated scales. Feedback was given for clinical case management. The project was developed in three consecutive stages and six phases. Data were collected for statistical analysis with a prognosis and palliative approach. RESULTS: 2104 cancer patients screened. 681 were NECPAL+. 21% of them presented more than six parameters of severity or progression. The mean general survival was 8 months. 61.9% died within the follow-up period. Survival predictors were identified. Over 65% of patients were referred to palliative care; 10% received home-care. Areas for improvement were recognized. An implementation document was created. DISCUSSION: This study showed that a predictive model is feasible, improving chances for timely referral and needs approach. It provided the basis for further implementation research and should encourage policymakers for embracing palliative model development for better cancer patient care.

Introducción: Los pacientes con cáncer tienen necesidades múltiples y complejas que se deben atender oportunamente en los distintos niveles del sistema sanitario. Argentina tiene una incidencia de cáncer media-alta pero solo el 14% de los pacientes acceden a cuidados paliativos. El objetivo de este estudio fue desarrollar e implementar un modelo multicéntrico de atención integral del paciente con cáncer avanzado. Métodos: El NECPAL2 fue un estudio observacional longitudinal prospectivo de dos años. Se evaluaron pacientes adultos con cáncer avanzado. Se utilizó la herramienta NECPAL como instrumento de cribado. Los pacientes NECPAL+ son aquellos con la pregunta sorpresa positiva - ¿Le sorprendería que este paciente muriera en el próximo año? (no)- y, al menos, un indicador de enfermedad avanzada. Los pacientes fueron reevaluados periódicamente con escalas validadas para la gestión clínica de casos. El proyecto se desarrolló en tres etapas consecutivas y seis fases. Se analizaron los resultados con un enfoque pronóstico y paliativo. Resultados: Se identificaron 2104 pacientes oncológicos, 681 eran NECPAL+. El 21% presentaba más de seis parámetros de gravedad o progresión. Más del 60% de los pacientes NECPAL+ tenían una evaluación inicial multidimensional completa y documentada. La supervivencia media general fue de 8 meses. El 61.9% falleció durante el periodo de seguimiento. Se identificaron predictores de supervivencia. Más del 65% fueron derivados a cuidados paliativos; el 10% recibió atención domiciliaria. Se reconocieron áreas de mejora. Se creó un documento de recomendaciones. Discusión: Este estudio demostró que un modelo predictivo multicéntrico y en varios niveles es factible y mejora las posibilidades de derivación oportuna para atención paliativa. A pesar de las limitaciones este estudio puede inspirar políticas para mejorar la atención integral de pacientes con cáncer avanzado.

Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties.

BACKGROUND: Family caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools. AIM: This study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC). DESIGN: Multicentre, cross-sectional study. SETTINGS/PARTICIPANTS: Family caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA). RESULTS: 138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach's alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale. CONCLUSIONS: The DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

Caregiver emotional distress: external open-behaviour signs.

OBJECTIVES: To determine whether specific external signs of emotional distress (ESED) can be an indirect measure of emotional distress in caregivers. METHODS: A cross-sectional multicentre design was used. 148 primary caregivers of advanced cancer patients attended in four Spanish palliative care units participated in this study. The emotional distress of caregivers was measured using both the Emotional Distress of Caregivers Scale and a psychological interview. Health professionals collected data using a standard clinical interview process after a brief training period. RESULTS: More than half the caregivers (60%) presented with emotional distress. A positive correlation (r=0.566) was found between the intensity of ESED and emotional distress per se. Caregivers who presented emotional distress showed more ESED than those that did not (p<0.01). The study found significant differences for the categories 'visible signs of sadness, fear, crying, feeling overwhelmed' (p<0.001), 'difficulty in separating from the patient: family refuses to let the patient make decisions and insists on care' (p<0.001) and 'visible signs of anger, irritability or frequent disagreement with therapeutic measures' (p<0.001). No significant differences were found with respect to gender. The set of items to measure these external signs presented an adequate reliability assessed using Cronbach's alpha (α=0.773). CONCLUSIONS: The assessment of ESED in caregivers could serve as a useful method to assess their emotional distress. Incorporating the systematic assessment of these external signs as part of the assessment of the emotional distress of primary caregivers could improve the overall assessment and treatment provided to these caregivers.

NECPAL tool prognostication in advanced chronic illness: a rapid review and expert consensus.

OBJECTIVE: To develop a proposal for a 2-year mortality prognostic approach for patients with advanced chronic conditions based on the palliative care need (PCN) items of the NECesidades PALiativas (NECPAL) CCOMS-ICO V.3.1 2017 tool. METHODS: A phase 1 study using three components based on the NECPAL items: (1) a rapid review of systematic reviews (SRs) on prognostic factors of mortality in patients with advanced chronic diseases and PCNs; (2) a clinician and statistician experts' consensus based on the Delphi technique on the selection of mortality prognostic factors; and (3) a panel meeting to discuss the findings of components (1) and (2). RESULTS: Twenty SRs were included in a rapid review, and 50% were considered of moderate quality. Despite methodological issues, nutritional and functional decline, severe and refractory dyspnoea, multimorbidity, use of resources and specific disease indicators were found to be potentially prognostic variables for mortality across four clinical groups and end-of-life (EoL) trajectories: cancer, dementia and neurologic diseases, chronic organ failure and frailty. Experts' consensus added 'needs' identified by health professionals. However, clinicians were less able to discriminate which NECPAL items were more reliable for a 'general' model. A retrospective cohort study was designed to evaluate this proposal in phase 2. CONCLUSIONS: We identified several parameters with prognostic value and linked them to the tool's utility to timely identify PCNs of patients with advanced chronic conditions in all settings of care. Initial results show this is a clinical and feasible tool, that will help with clinical pragmatic decision-making and to define services.

Prevalence and characteristics of patients with heart failure needing palliative care.

BACKGROUND: Few hospitals and heart failure (HF) clinics offer concurrent palliative care (PC) together with life-prolonging therapies. To know the prevalence of patients in HF clinics needing PC and useful tools to recognize them are the first steps to extending PC in those settings. However, it is still unknown whether tools commonly used to identify patients with HF needing PC can correctly distinguish them. Two systematic reviews found that the NECesidades PALiativas (NECPAL) tool was one of the two most commonly used tools to asses PC needs in HF patients. Therefore, we assessed 1) the prevalence of PC needs in HF clinics according to the NECPAL tool, and 2) the characteristics of the patients identified as having PC; mainly, their quality of life (QoL), symptom burden, and psychosocial problems. METHODS: This cross-sectional study was conducted at two HF clinics in Colombia. We assessed the prevalence of PC in the overall sample and in subgroups according to clinical and demographic variables. We assessed QoL, symptom burden, and psychosocial problems using the 12-Item Short-Form Health Survey (SF-12), the Kansas City Cardiomyopathy Questionnaire (KCCQ) and the Edmonton Symptom Assessment System (ESAS). We compared the results of these tools between patients identified as having PC needs (+NECPAL) and patients identified as not having PC needs (-NECPAL). RESULTS: Among the 178 patients, 78 (44%) had PC needs. The prevalence of PC needs was twice as nigh in patients NYHA III/IV as in patients NYHA I/II and almost twice as high in patients older than 70 years as in patients younger than 70 years. Compared to -NECPAL patients, +NECPAL patients had worse QoL, more severe shortness of breath, tiredness, drowsiness, and pain, and more psychosocial problems. CONCLUSION: The prevalence of PC needs in outpatient HF clinics is high and is even higher in older patients and in patients at more advanced NYHA stages. Compared to patients identified as not having PC needs, patients identified as having PC needs have worse QoL, more severe symptoms, and greater psychosocial problems. Including a PC provider in the multidisciplinary team of HF clinics may help to assess and cover these needs.

La esclerosis lateral amiotrófica (ELA) desde la Atención Primaria. Epidemiología y características clínico-asistenciales / Amyotrophic lateral sclerosis (ALS) from the perspective of Primary Care. Epidemiology and clinical-care characteristics

La ELA es una enfermedad poco frecuente en atención primaria (AP), representa un desafío para el médico de familia especialmente en atención domiciliaria. Objetivo: Conocer la incidencia y prevalencia de la ELA en un área de gestión de AP, las características clínicas y la utilización de recursos sanitarios. Diseño: Estudio observacional. Emplazamiento: Dirección de AP Costa de Ponent, Región Sanitaria Metropolitana Sur, Barcelona, Cataluña, España. Participantes: Pacientes con ELA ≥18 años diagnosticados hasta el 01/03/2017. Mediciones principales: Edad, sexo, características: forma de inicio (espinal, bulbar, otras), intervalo entre inicio de síntomas y diagnóstico, portadores gastrostomía percutánea, ventilación no invasiva o invasiva. Identificación en AP como paciente crónico complejo o con necesidades paliativas. Inclusión en programas de atención domiciliaria (PAD). Modelo de atención hospitalario. Resultados: Ochenta y un pacientes, edad media 65,6 años (±11,7), varones 49,4%. Forma de inicio: espinal 69%, bulbar 21%, otras 4%. Intervalo entre inicio de síntomas y diagnóstico 12 meses. Identificados como paciente crónico complejo o con necesidades paliativas 13,6%, incluidos en PAD 29 pacientes (35,8%). Atendidos en modelo hospitalario integral 79 pacientes (97,5%). Prevalencia 6,1/100.000 habitantes en 2017. Incidencia anual entre 1,2 casos/100.000 habitantes/año en 2012 y 3,5 casos/100.000 habitantes/año en 2016. Conclusiones: Utilizar gastrostomía percutánea en la ELA favorece la identificación como paciente crónico complejo o con necesidades paliativas e inclusión en PAD. Utilizar ventilación no invasiva favorece la inclusión en PAD. Los datos de incidencia y prevalencia de ELA son superiores a los descritos previamente en la misma área. Es necesaria la identificación precoz de estos pacientes en los modelos de atención a la cronicidad en equipos de AP.(AU)

Amyotrophic Lateral Sclerosis (ALS) is a rare disease in primary care (PC), it represents a challenge for the family doctor, especially in home care. Objective: To know the incidence and prevalence of ALS in an area of ??PA management, the clinical characteristics and use of health resources. Design: Observational study. Location: PC-Direction Costa de Ponent, South Metropolitan Health Region, Barcelona, Catalonia, Spain. Participants: Patients with ALS ≥18 years diagnosed until 03/01/2017. Main measurements: Age, sex, characteristics: form of appearance (spinal, bulbar, others), interval between onset of symptoms and diagnosis, percutaneous gastrostomy carriers, ventilation non-invasive or invasive. Identification in PC as a Complex Chronic Patient or with palliative needs (CCP). Inclusion in home care programs (PAD). Model of attention hospitable. Results: 81 patients, mean age 65.6 years (± 11.7), men 49.4%. Shape of onset: spinal 69%, bulbar 21%, another 4%. Interval between the onset of symptoms and diagnosis 12 months. Identified as a CCP 13.6%, 29 patients (35.8%) included in PAD. Attended in comprehensive hospital model 79 patients (97.5%). Prevalence 6.1/100,000 inhabitants in 2017. Annual incidence between 1.2 cases/100,000 inhabitants/year in 2012 and 3.5 cases/100,000 inhabitants/year in 2016. Conclusions: The use of percutaneous gastrostomy in ALS favors the identification as CCP or with palliative needs and inclusion in PAD. The use of non-invasive ventilation favors inclusion in PAD. The incidence and prevalence data for ALS are higher than those described above in the same area. Early identification is necessary of these patients in the chronic care models in PC teams.(AU)

[Amyotrophic lateral sclerosis (ALS) from the perspective of Primary Care. Epidemiology and clinical-care characteristics]. / La esclerosis lateral amiotrófica (ELA) desde la Atención Primaria. Epidemiología y características clínico-asistenciales.

Amyotrophic Lateral Sclerosis (ALS) is a rare disease in primary care (PC), it represents a challenge for the family doctor, especially in home care. OBJECTIVE: To know the incidence and prevalence of ALS in an area of ??PA management, the clinical characteristics and use of health resources. DESIGN: Observational study. LOCATION: PC-Direction Costa de Ponent, South Metropolitan Health Region, Barcelona, Catalonia, Spain. PARTICIPANTS: Patients with ALS ≥18 years diagnosed until 03/01/2017. Main measurements Age, sex, characteristics: form of appearance (spinal, bulbar, others), interval between onset of symptoms and diagnosis, percutaneous gastrostomy carriers, ventilation non-invasive or invasive. Identification in PC as a Complex Chronic Patient or with palliative needs (CCP). Inclusion in home care programs (PAD). Model of attention hospitable. RESULTS: 81 patients, mean age 65.6 years (± 11.7), men 49.4%. Shape of onset: spinal 69%, bulbar 21%, another 4%. Interval between the onset of symptoms and diagnosis 12 months. Identified as a CCP 13.6%, 29 patients (35.8%) included in PAD. Attended in comprehensive hospital model 79 patients (97.5%). Prevalence 6.1/100,000 inhabitants in 2017. Annual incidence between 1.2 cases/100,000 inhabitants/year in 2012 and 3.5 cases/100,000 inhabitants/year in 2016. CONCLUSIONS: The use of percutaneous gastrostomy in ALS favors the identification as CCP or with palliative needs and inclusion in PAD. The use of non-invasive ventilation favors inclusion in PAD. The incidence and prevalence data for ALS are higher than those described above in the same area. Early identification is necessary of these patients in the chronic care models in PC teams.

Frailty degree and illness trajectories in older people towards the end-of-life: a prospective observational study.

OBJECTIVES: To assess the degree of frailty in older people with different advanced diseases and its relationship with end-of-life illness trajectories and survival. METHODS: Prospective, observational study, including all patients admitted to the Acute Geriatric Unit of the University Hospital of Vic (Spain) during 12 consecutive months (2014-2015), followed for up to 2 years. Participants were identified as end-of-life people (EOLp) using the NECPAL (NECesidades PALiativas, palliative care needs) tool and were classified according to their dominant illness trajectory. The Frail-VIG index (Valoración Integral Geriátrica, Comprehensive Geriatric Assessment) was used to quantify frailty degree, to calculate the relationship between frailty and mortality (Receiver Operating Characteristic (ROC) curves), and to assess the combined effect of frailty degree and illness trajectories on survival (Cox proportional hazards model). Survival curves were plotted using the Kaplan-Meier estimator with participants classified into four groups (ie, no frailty, mild frailty, moderate frailty and advanced frailty) and were compared using the log-rank test. RESULTS: Of the 590 persons with a mean (SD) age of 86.4 (5.6) years recruited, 260 (44.1%) were identified as EOLp, distributed into cancer (n=31, 11.9%), organ failure (n=79, 30.4%), dementia (n=86, 33.1%) and multimorbidity (n=64, 24.6%) trajectories. All 260 EOLp had some degree of frailty, mostly advanced frailty (n=184, 70.8%), regardless of the illness trajectory, and 220 (84.6%) died within 2 years. The area under the ROC curve (95% CI) after 2 years of follow-up for EOLp was 0.87 (0.84 to 0.92) with different patterns of survival decline in the different end-of-life trajectories (p<0.0001). Cox regression analyses showed that each additional deficit of the Frail-VIG index increased the risk of death by 61.5%, 30.1%, 29.6% and 12.9% in people with dementia, organ failure, multimorbidity and cancer, respectively (p<0.01 for all the coefficients). CONCLUSIONS: All older people towards the end-of-life in this study were frail, mostly with advanced frailty. The degree of frailty is related to survival across the different illness trajectories despite the differing survival patterns among trajectories. Frailty indexes may be useful to assess end-of-life older people, regardless of their trajectory.

NECPAL prognostic tool: a palliative medicine retrospective cohort study.

OBJECTIVE: To develop and validate a prognostic model to assess mortality risk at 24 months in patients with advanced chronic conditions. METHODS: Retrospective design based on a previous population cohort study with 789 adults who were identified with the surprise question and NECPAL tool from primary and intermediate care centres, nursing homes and one acute hospital of Spain. A Cox regression model was used to derive a mortality predictive model based on patients' age and six previously selected NECPAL prognostic factors (palliative care need identified by healthcare professionals, functional decline, nutritional decline, multimorbidity, use of resources, disease-specific criteria of severity/progression). Patients were split into derivation/validation cohorts, and four steps were followed: descriptive analysis, predictors' assessment, model estimation and model assessment. RESULTS: All predictive variables were independently associated with increased risk of mortality at 24 months. Performance model including age was good; discrimination power by area under the curve (AUC) was 0.72/0.67 in the derivation/validation cohorts, and correlation between expected and observed (E/O) mortality ratio was 0.74/0.70. The model showed similar performance across settings (AUC 0.65-0.74, E/O 1.00-1.01), the best performance in oncological patients (AUC 0.78, E/O 0.76) and the worst in dementia patients (AUC 0.58, E/O 0.85). Based on the number of factors affected, three prognostic stages with significant differences and a median survival of 38, 17.2 and 3.6 months (p<0.001) were defined. CONCLUSION: The NECPAL prognostic tool is accurate and eventually useful at the clinical practice. Stratification in risk groups may enable early intervention and enhance policy-making and service planning.

Palliative and prognostic approach in cancer patients identified in the multicentre NECesidades PALiativas 2 study in Argentina.

BACKGROUND: Early identification of palliative needs has proven benefits in quality of life, survival and decision-making. The NECesidades PALiativas (NECPAL) Centro Coordinador Organización Mundial de la Salud - Instituto Catalán de Oncología (CCOMS-ICO©) tool combines the physician's insight with objective disease progression parameters and advanced chronic conditions. Some parameters have been independently associated with mortality risk in different populations. According to the concept of the 'prognostic approach' as a companion of the 'palliative approach', predictive models that identify individuals at high mortality risk are needed. OBJECTIVE: We aimed to identify prognostic factors of mortality in cancer in our cultural context. METHOD: We assessed cancer patients with palliative needs until death using this validated predictive tool at three hospitals in Buenos Aires City. This multifactorial, quantitative and qualitative non-dichotomous assessment process combines subjective perception (the surprise question: Would you be surprised if this patient dies in the next year?) with other parameters, including the request (and need) for palliative care (PC), the assessment of disease severity, geriatric syndromes, psychosocial factors and comorbidities, as well as the use of healthcare resources. RESULTS: 2,104 cancer patients were identified, 681 were NECPAL+ (32.3%). During a 2-year follow-up period, 422 NECPAL+ patients died (61.9%). The mean overall survival was 8 months. A multivariate model was constructed with significant indicators in univariate analysis. The best predictors of mortality were: nutritional decline (p < 0.000), functional decline (p < 0.000), palliative performance scale (PPS) ≤ 50 (p < 0.000), persistent symptoms (p < 0.002), functional dependence (p < 0.000), poor treatment response (p < 0.000), primary cancer diagnosis (p = 0.024) and condition (in/outpatients) (p < 0.000). Only three variables remained as survival predictors: low response to treatment (p < 0.001), PPS ≤ 50 (p < 0.000) and condition (in/outpatients) (p < 0.000). CONCLUSION: This prospective model aimed to improve cancer survival prediction and timely PC referral in Argentinian hospitals.

Cross-cultural adaptation and semantic validation of an instrument to identify palliative requirements in Portuguese.

OBJECTIVE: To translate and make cross-cultural adaptation of NECPAL CCOMS-ICO© tool to Portuguese, and to analyze its semantic validity. METHODS: A methodological research about NECPAL CCOMS-ICO© tool cross-cultural adaptation, translated from Spanish into Portuguese and measurement of semantic validity. The cross-cultural adaptation process was conducted according to Beaton recommendations, including translation, translation synthesis, back-translation, and analysis of semantic, idiomatic, conceptual, and cultural equivalence of translated and back-translated tool versions, resulting in a pre-final version, which was submitted to a pre-test (n=35). Contend Validity Index was calculated to analyze semantic validity. RESULTS: Cross-cultural adaptation process allowed us to prepare the final version of this tool, which was named NECPAL-BR. Collected data from pre-testing step enabled the analysis of semantic validity. The Content Validity Index observed at this step was 0.94. CONCLUSION: The semantic validity of the tool in its Portuguese version was confirmed; therefore, it may assist in screening chronic progressive disease patients, aiming to provide early palliative care. It may also be used to develop clinical and team performance indicators, and be employed as a care management tool designed to optimize resources.