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)

[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.

Assessment of the Effectiveness, Socio-Economic Impact and Implementation of a Digital Solution for Patients with Advanced Chronic Diseases: The ADLIFE Study Protocol.

Due to population ageing and medical advances, people with advanced chronic diseases (ACD) live longer. Such patients are even more likely to face either temporary or permanent reduced functional reserve, which typically further increases their healthcare resource use and the burden of care on their caregiver(s). Accordingly, these patients and their caregiver(s) may benefit from integrated supportive care provided via digitally supported interventions. This approach may either maintain or improve their quality of life, increase their independence, and optimize the healthcare resource use from early stages. ADLIFE is an EU-funded project, aiming to improve the quality of life of older people with ACD by providing integrated personalized care via a digitally enabled toolbox. Indeed, the ADLIFE toolbox is a digital solution which provides patients, caregivers, and health professionals with digitally enabled, integrated, and personalized care, supporting clinical decisions, and encouraging independence and self-management. Here we present the protocol of the ADLIFE study, which is designed to provide robust scientific evidence on the assessment of the effectiveness, socio-economic, implementation, and technology acceptance aspects of the ADLIFE intervention compared to the current standard of care (SoC) when applied in real-life settings of seven different pilot sites across six countries. A quasi-experimental trial following a multicenter, non-randomized, non-concurrent, unblinded, and controlled design will be implemented. Patients in the intervention group will receive the ADLIFE intervention, while patients in the control group will receive SoC. The assessment of the ADLIFE intervention will be conducted using a mixed-methods approach.

Análisis de la atención recibida por pacientes con enfermedad crónica avanzada en el ámbito de atención primaria / Analysis of the care received by patients with advanced chronic disease in the primary care setting

Objetivo : Analizar las características y la atención sanitaria recibida por los pacientes, tras la inclusión en un programa de atención a pacientes con enfermedad crónica avanzada («AgéndaECA»).Diseño : Estudio descriptivo.Emplazamiento : Departamento de Manises Comunidad Valenciana. Atención primaria.Participantes : Pacientes residentes en el Departamento de Manises, incluidos en el programa de atención al paciente con enfermedad crónica avanzada («AgéndaECA») en el año 2018 (n = 268). Criterio de inclusión NECPAL 3.0 positivo.Mediciones : Variables relacionadas con las características de los pacientes, lugar de fallecimiento, atención sanitaria recibida tanto en el ámbito de atención primaria como hospitalaria.Resultados : Edad media 80,9 años. Diagnóstico principal: demencia y enfermedades neurodegenerativas (42,2%), cáncer (31,3%). Permanencia media en programa: 116 días. El 33,8% de los pacientes no tuvo ninguna hospitalización, falleciendo el 50,6% en su domicilio. Se analizó la atención sanitaria seis meses antes y seis meses después de la inclusión, las hospitalizaciones disminuyeron de manera significativa (0,93) antes, (0,51) después, disminuyendo también las visitas a urgencias hospitalarias (1,69) antes, (0,89) después. Aumentaron las visitas domiciliarias médicas (4,1) antes, (5,7) después, y de enfermería (9,3) antes, (16,4) después. Conclusiones: El domicilio es el lugar fundamental de atención de los pacientes con enfermedad crónica avanzada. La inclusión en el programa de atención aumenta las visitas domiciliarias y disminuye la atención hospitalaria. Es necesario proponer y evaluar estrategias de mejora en la atención a los pacientes con enfermedad crónica avanzada desarrolladas en el ámbito de atención primaria.(AU)

Objective : Analyze the characteristics and health care received by the patients included in a care program for advanced chronic disease («AgéndaECA»).Design : Descriptive study.Location : Manises Department, Valencian Community, Primary Care.Participants : Patients residing in Manises Department, included in the care program for patients with advanced chronic disease («AgéndaECA») in 2018 (n = 268). NECPAL 3.0 positive inclusion criteria.Main measurements : Variables related to the characteristics of the patients, place of death, health care received in primary care and hospital care.Results : Average age was 80.9 years. Main diagnosis: dementia and neurodegenerative diseases (42.2%), cancer (31.3%). Average stay in the program 116 days. 33.8% of the patients did not have any hospitalization, 50.6% died at home. Health care was analyzed 6 months before and 6 months after inclusion, hospitalizations decreased significantly (0.93) before, (0.51) after, also decreasing visits to hospital emergencies (1.69), before, (0.89) after. Medical home visits (4.1) before, (5.5) after and nursing home visits (9.3) before, (16.4) after.Conclusions: Home is the fundamental place of care for patients with advanced chronic disease. The inclusion in a care program increases home visits and decreases hospital care. It is necessary to propose and evaluate strategies for improving the care of patients with advanced chronic disease developed in the primary care setting.(AU)

[Analysis of the care received by patients with advanced chronic disease in the primary care setting]. / Análisis de la atención recibida por pacientes con enfermedad crónica avanzada en el ámbito de atención primaria.

OBJECTIVE: Analyze the characteristics and health care received by the patients included in a care program for advanced chronic disease («AgéndaECA¼). DESIGN: Descriptive study. LOCATION: Manises Department, Valencian Community, Primary Care. PARTICIPANTS: Patients residing in Manises Department, included in the care program for patients with advanced chronic disease («AgéndaECA¼) in 2018 (n = 268). NECPAL 3.0 positive inclusion criteria. MAIN MEASUREMENTS: Variables related to the characteristics of the patients, place of death, health care received in primary care and hospital care. RESULTS: Average age was 80.9 years. Main diagnosis: dementia and neurodegenerative diseases (42.2%), cancer (31.3%). Average stay in the program 116 days. 33.8% of the patients did not have any hospitalization, 50.6% died at home. Health care was analyzed 6 months before and 6 months after inclusion, hospitalizations decreased significantly (0.93) before, (0.51) after, also decreasing visits to hospital emergencies (1.69), before, (0.89) after. Medical home visits (4.1) before, (5.5) after and nursing home visits (9.3) before, (16.4) after. CONCLUSIONS: Home is the fundamental place of care for patients with advanced chronic disease. The inclusion in a care program increases home visits and decreases hospital care. It is necessary to propose and evaluate strategies for improving the care of patients with advanced chronic disease developed in the primary care setting.

A experiência emocional dos familiares cuidadores perante a alta da pessoa com doença crónica avançada para o domicílio / The emotional experience of family caregivers when faced with the discharge of a person with advanced chronic disease to home

Viver com qualidade é um desafio da sociedade atual. Apesar de vivermos mais anos, o aumento das doenças crónicas progressivas e incapacitantes, verificado nas últimas décadas, acarreta uma série de limitações e consequências na vida das pessoas, famílias e sociedade em geral que, por si só, fundamentam a importância de um cuidador na comunidade. Contudo, cuidar da pessoa com doença crónica avançada no domicílio revela-se uma tarefa árdua pela complexidade que a sua condição impõe nas várias dimensões da pessoa doente e familiar cuidador. Tornar-se cuidador é considerada uma transição que exige a redefinição de papéis e responsabilidades, bem como uma adaptação e o uso de estratégias que permitam uma eficaz gestão emocional perante as vivências e as exigências que o exercício do papel acarreta no dia-a-dia. Assim, tendo em conta estes pressupostos, pareceu-nos ser primordial conhecer a experiência emocional dos familiares cuidadores em unidades de cirurgia, perante a alta da pessoa com doença crónica avançada para o domicílio, de forma a contribuir para que as famílias cuidadoras continuem os seus projetos de vida com qualidade, e para o desenvolvimento de estratégias de intervenção que visem preservar o bem-estar das famílias cuidadoras e da pessoa cuidada. Metodologia: Estudo qualitativo, estudo de caso. Para a recolha de dados foi realizada entrevista semiestruturada a dez familiares cuidadores de pessoas com doença crónica avançada, internadas em unidades de cirurgia de uma Unidade Local de Saúde (ULS) da área metropolitana do Porto, e com alta para o domicílio. Efetuada análise de conteúdo segundo o referencial de Bardin (2011). O estudo respeitou os princípios ético-morais. Resultados: Perante o regresso ao domicílio da pessoa com doença crónica avançada, após um evento que originou a necessidade de internamento hospitalar, o familiar cuidador experiencia uma série de sentimentos e emoções que se estendem desde a incerteza, choro, alegria, alívio, misto de emoções ao dever de cuidar. Mobilizam diversas estratégias na sua autogestão emocional, dando ênfase ao recurso familiar. Têm a perceção que podem cuidar da pessoa com doença crónica no domicílio, enfatizando que para além de ser um dever familiar e demonstração de gratidão, devem satisfazer o desejo do doente. Grande parte dos familiares cuidadores enfatiza que obtiveram uma resposta efetiva dos enfermeiros dos cuidados hospitalares e dos enfermeiros dos Cuidados de Saúde Primários às necessidades presentes. Salientam vários benefícios da permanência da pessoa com doença crónica avançada no domicílio, tais como proporcionar amor, conforto e um processo de fim de vida acompanhado. Contudo, mencionam várias consequências para si, nomeadamente a perda do papel social, perda de emprego, perda de liberdade, sobrecarga de tarefas, sobrecarga financeira, perda do espaço familiar, alterações de rotinas quotidianas, cansaço físico e conflitos familiares. Recorrem a diversos apoios para poderem cuidar e expressam vários desejos. É primordial existir apoio de enfermeiros especialistas de forma a dignificar os cuidados no domicílio à pessoa com doença irrecuperável.

Living with quality is a challenge for today's society. Despite the increasing in the average life expectancy seen in the last decades, the growth of chronic and disabling chronic diseases generates a series of limitations and consequences in people's lives, their families and society, which justifies the importance of a caregiver in the community. However, taking care of a person with an advanced chronic disease at home proves to be an arduous task, due to the complexity that their illness imposes on the different dimensions of the sick person and the family caregiver. Becoming a caregiver is a transition that requires a redefinition of roles and responsibilities of the individual. It is useful to acquire strategies that allow an effective emotional management to face the challenges and demands that the exercise of that role imposes on daily life. Therefore, taking this into account, it seemed essential to understand the emotional experiences of family caregivers, in surgery units, before the home discharge of patients with advanced chronic diseases. This may contribute towards the continuity of the carer's life projects and for the development of intervention strategies that aim to preserve the family caregiver and the patient's well-being. Methodology: Qualitative study, case study. A semi-structured interview was conducted with ten family caregivers of advanced chronic disease patients, that were admitted in a surgery unit of a Local Health Unit (ULS), in the metropolitan area of Porto, at the time of home discharge. Data analysis was performed according to Bardin referential (2011). This study was approved by Ethical committee. Results: At the time advanced chronic disease patients return home, after an event that led to hospitalization, the family caregiver experiences a series of feelings and emotions that range from uncertainty, crying, joy, relief, mixed feelings and the duty to care. They gather strategies for emotional self-management, emphasizing the support of family members as a resource. They believe they are able to take care of the patient at home, enhancing the importance of satisfying the patient's desire, besides considering this task as a family duty and a showing of gratitude. Most family caregivers state they obtained an effective response from hospital-care nurses and primary health-care nurses. They highlight several benefits of home care, such as providing love, comfort and being able to manage the patient´s end-of-life process. However, they mention several negative consequences as individuals, such as losing their social role, unemployment, losing freedom, tasks overload, financial overload, loss of their family space, changing daily routines, tiredness and having family conflicts. Carers report using several sources of support that help being able to care for, and they express various desires. Therefore, it is essential to have support from specialist nurses in order to dignify home care for patients with unrecoverable diseases.

Comparison between PROFUND and PALIAR indexes in polypathological patients with advanced non-oncologic chronic diseases. / Comparación de los índices PROFUND y PALIAR en pacientes pluripatológicos con enfermedad crónica no oncológica en fase avanzada.

BACKGROUND AND OBJECTIVE: To compare the discrimination power of PROFUND and PALIAR indexes for predicting mortality in polypathological patients with advanced non-oncologic chronic disease. MATERIAL AND METHODS: Prospective multicentre cohort study. We included polypathological patients with advanced non-oncologic chronic disease, who were admitted to internal medicine departments between July 1st and December 31th, 2014. Data was collected from each patient on age, sex, categories of polypathology, advanced disease, comorbidity, functional and cognitive assessment, terminal illness symptoms, need for caregiver, hospitalisation in the past three and 12 months and number of drugs. We calculated the PROFUND and PALIAR indexes and conducted a 12-month follow-up. We assessed mortality with the Kaplan-Meier survival curves and the discrimination of indexes with the ROC curves. RESULTS: We included 213 patients with a mean (standard deviation) age of 83.0 (7.0) years, 106 (49.8%) of whom were female. Mortality at six months was 40.4% and at 12 months 50.2%. Deceased patients scored higher scores on the PROFUND [11.2(4.2) vs 8.5(3.9); P<.001] and PALIAR [6.7 (4.6) vs 3.6(3.1); p<0,001] indexes. The discrimination of PALIAR index at six months (under the curve area 0.734 95%CI 0.665-0.803) was higher than of PROFUND, and there was no difference at 12 months. CONCLUSIONS: In polypathological patients with advanced non-oncologic chronic disease, the PALIAR index had better discrimination power than PROFUND index at 66 months and there were no differences at 12 months.

External validation of the PALIAR index for patients with advanced, nononcologic chronic diseases.

OBJECTIVE: To externally validate the PALIAR index for patients with advanced, nononcologic chronic diseases. METHODS: We performed a prospective, multicenter cohort study that included patients with advanced, nononcologic chronic diseases hospitalized in internal medicine departments and treated consecutively by the researchers between July 1st and December 31st, 2014. Data were collected from each patient on age, sex, advanced disease, Charlson index, comorbidities, Barthel index, terminal illness symptoms, need for caregiver, hospitalization in the past 3 and 12 months and number of drugs. We calculated the PALIAR index and conducted a 6-month follow-up. To analyze the association between the variables and mortality, we constructed several multivariate logistic regression models. RESULTS: The study included 295 patients with a mean age of 82.7 (8.6) years, 148 (50.2%) of whom were women. Mortality at 6 months was associated with the albumin level (OR 0.52, 95% CI 0.30-0.85, p = 0.011), and the terminal illness (OR 2.75, 95% CI 1.55-4.89, p = 0.001). The PALIAR index showed good discrimination for predicting mortality (statistical C, 0.728, 95% CI 0.670-0.787). A reduced version of the PALIAR index showed similar mortality discriminatory power. CONCLUSIONS: The PALIAR index is a reliable tool for predicting mortality in patients with advanced, nononcologic chronic diseases.

Prevalence, risk factors and adverse outcomes of anticholinergic burden in patients with advanced chronic conditions at hospital admission.

AIM: To evaluate the anticholinergic burden (ACB), the risk factors associated with its onset and the clinical consequences for patients with advanced chronic conditions. METHODS: A 10-month cross-sectional study was carried out in an acute hospital care geriatric unit. Patients with advanced chronic conditions were identified by the NECessity of PALliative care (NECPAL) test. The ACB was established using the Anticholinergic Drug Scale and Drug Burden Index (DBI) tools. Demographic, pharmacological and clinical patient data were collected with the objective of determining risk factors related to ACB. Measured clinical outcomes were the presence of acute confusional state, bone fractures, length of stay, mortality and 12-month survival rate. RESULTS: A total of 235 patients were recruited (mean age 86.80 years, SD 5.37 years; 65.50% women), and 82.10% (DBI) and 93.6% (Anticholinergic Drug Scale) of the patients were treated with anticholinergic medications. Excessive polypharmacy (≥10 drugs) was identified as a risk factor for the presence of anticholinergic medication (Anticholinergic Drug Scale: OR 6.26, 95% CI 1.38-28.42; DBI: OR 3.44, 95% CI 1.60-7.38). High anticholinergic burden (by DBI >2 points) was an independent risk factor for the presence of acute confusional state on hospital admission (OR 2.98, 95% CI 1.04-8.50). However, ACB was not related to bone fractures on admission, length of stay, mortality or survival. CONCLUSIONS: Patients with advanced chronic conditions are frequently treated with anticholinergic drugs, with excessive polypharmacy as a risk factor. Anticholinergic drugs are a risk factor for the presence of acute confusional state on hospital admission, but have no other effect in terms of morbimortality. Geriatr Gerontol Int 2018; 18: 1159-1165.

[Erythropoiesis stimulating agents: Literature review of uses and indications in advanced oncological and non-oncological disease in the elderly]. / Agentes estimuladores de la eritropoyetina: revisión bibliográfica de los usos e indicaciones en enfermedad avanzada oncológica y no oncológica en el anciano.

The aim of this article is to review possible indications and controversies about the most frequent uses of ESAs in the treatment of anaemia in elderly patients with oncological and non-oncological diseases. Using PubMed a systematic review was carried out on articles published from 1985 to September 2016, as well as a review of the main Spanish, European, and American consensus guidelines on each of the following diseases in which could pose the treatment of anaemia associated with ESA. A review was also carried out on the main Spanish, European and American consensus guidelines regarding the management of anaemia related to the diseases outlined in this article. It was found that there are limitations of its use in elderly patients with advanced disease, mainly due to the lack of uniformity and consensus in the recommendations, and the absence of large-scale prospective trials to determine the effectiveness of ESA in this population. There seems to be consensus in the use in patients with advanced chronic kidney disease, individualised in patients with non-myeloid cancer on treatment without curative intent, and in patients with myelodysplastic syndrome, still responders to space transfusional support. In the remainder, it should be individualised, since the risk of mortality and cardioembolic morbidity is clearly increased. It should not be the solution to treat anaemia, in cases of urgency or short-term transfusional need, which are often present in these patients.

Palliative care and end-of-life care for polypathological patients. / Cuidados paliativos y atención al final de la vida en los pacientes pluripatológicos.

Patients with advanced chronic diseases receive fragmented care, which entails high resource consumption and a poor quality of life. Uncertainty in the prognosis and scarce investigation into the importance of symptomatic control in this patient group hinders a proper therapeutic approach. Palliative care teams optimise the use of resources through comprehensive patient care, the optimization of the patient's environment, communication, the preparation of early care plans and the creation of coordinated healthcare circuits, which improve the quality of the patient's care in advanced stages of the disease. In the end-of-life phase, the therapeutic approach is focused on symptomatic control, selecting treatments according to the cause, comorbidities and the patient's wishes. To control refractory symptoms, palliative sedation is considered an indispensable option.