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.

Physical exercise and fatigue in advanced gastrointestinal cancer during chemotherapy.

OBJECTIVES: This study was aimed to analyse the effect of a patient-oriented modality of physical exercise (programmed and directed physical exercise (PDPE)) on cancer-related fatigue (CRF) and quality of life (QoL). The secondary aim was to evaluate changes in body composition and skeletal muscle function during the study in patients with and without PDPE. METHODS: A prospective randomised study was conducted to analyse the impact of PDPE on CRF and QoL. Patients were selected before the development of CRF to set the intervention before its appearance. A high probability CRF population was chosen: patients with advanced gastrointestinal cancer undergoing chemotherapy with weight loss (≥5%) over the last 6 months. PDPE consisted of a programme of exercise delivered weekly and adjusted to patients' medical conditions. Four visits were planned (weeks 0, 4, 8 and 12). QoL, CRF, body composition and skeletal muscle function were evaluated in each visit. RESULTS: From 101 patients recruited, 64 were considered evaluable, with three or four visits completed (n=30 control, n=34 PDPE group). Satisfactory compliance of ≥50% to the PDPE programme was seen in 47%. A reduction in the severity of fatigue was detected in the PDPE group (p=0.019), being higher in the subgroup of satisfactory compliance (p<0.001). This latter group showed better results of QoL in comparison with the control group (p=0.0279). A significant increase in endurance was found in the PDPE group (p<0.001). CONCLUSION: PDPE reduced the severity of fatigue and improved QoL. The difference in endurance would explain the results seen in the severity of fatigue.

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.

International palliative care experts' view on phenomena indicating the last hours and days of life.

BACKGROUND: Providing the highest quality care for dying patients should be a core clinical proficiency and an integral part of comprehensive management, as fundamental as diagnosis and treatment. The aim of this study was to provide expert consensus on phenomena for identification and prediction of the last hours or days of a patient's life. This study is part of the OPCARE9 project, funded by the European Commission's Seventh Framework Programme. METHOD: The phenomena associated with approaching death were generated using Delphi technique. The Delphi process was set up in three cycles to collate a set of useful and relevant phenomena that identify and predict the last hours and days of life. Each cycle included: (1) development of the questionnaire, (2) distribution of the Delphi questionnaire and (3) review and synthesis of findings. RESULTS: The first Delphi cycle of 252 participants (health care professionals, volunteers, public) generated 194 different phenomena, perceptions and observations. In the second cycle, these phenomena were checked for their specific ability to diagnose the last hours/days of life. Fifty-eight phenomena achieved more than 80% expert consensus and were grouped into nine categories. In the third cycle, these 58 phenomena were ranked by a group of palliative care experts (78 professionals, including physicians, nurses, psycho-social-spiritual support; response rate 72%, see Table 1) in terms of clinical relevance to the prediction that a person will die within the next few hours/days. Twenty-one phenomena were determined to have "high relevance" by more than 50% of the experts. Based on these findings, the changes in the following categories (each consisting of up to three phenomena) were considered highly relevant to clinicians in identifying and predicting a patient's last hours/days of life: "breathing", "general deterioration", "consciousness/cognition", "skin", "intake of fluid, food, others", "emotional state" and "non-observations/expressed opinions/other". CONCLUSION: Experts from different professional backgrounds identified a set of categories describing a structure within which clinical phenomena can be clinically assessed, in order to more accurately predict whether someone will die within the next days or hours. However, these phenomena need further specification for clinical use.

Use of the palliative outcome scale in Argentina: a cross-cultural adaptation and validation study.

Although measuring outcomes is essential to ensuring palliative care effectiveness, there is an absence of properly validated measures in many countries. We undertook a cross-cultural adaptation and validation of the Palliative Outcome Scale (POS) into a Spanish (Argentina) language and cultural context. The methodology used a sequence of phases: 1) verification of conceptual equivalence (literature review, professional interviews, and patient focus groups); 2) multiple translations; 3) committee review; and 4) field testing. Psychometric analysis entailed evaluation of quantitative content validity, construct validity, staff and patients' ratings comparison, internal consistency, test-retest reliability, and responsiveness to change. Conceptual equivalence was achieved. Multiple changes were introduced after the translations and field testing in 65 patients and 20 professionals. Content validity was high for all but one item. Construct validity against a validated quality-of-life measure (European Organization for Research and Treatment of Cancer Quality of Life C-30) was confirmed (rho=0.74, P<0.0005). There was acceptable agreement between staff and patients (Cohen's weighted kappa >0.3) for 5/10, 8/10, and 6/9 items at each of three time-point evaluations and good correlation for all but one item (Spearman coefficient >0.7). Internal consistency was acceptable (Cronbach's alpha=0.68-0.69 and 0.66-0.73) for patient and staff ratings, respectively, and test-retest reliability showed very high agreement for every item (>0.80). The Argentine POS showed adequate responsiveness to change, although significant difference was reached for only 3 out of 10 items for patients and staff, respectively. Completion of the POS did not take more than 12 and 6 minutes for patients and staff, respectively. This study indicates that the Argentine POS is a valid and reliable measure of palliative care outcomes with advanced cancer patients.

Drug management of terminal symptoms in advanced cancer patients.

PURPOSE OF REVIEW: This review addresses recent research into drug management of terminal major symptoms such as breathlessness, terminal delirium and death rattle. RECENT FINDINGS: High quality evidence on pharmacotherapy at the end of life is lacking. For delirium currently available data demonstrate no clear advantage of use of atypical antipsychotics. The roles of donepezil and modafinil in management of delirium are yet to be assessed. Regarding dyspnoea, one randomized trial demonstrated that midazolam, in combination treatment, may enhance the effect of morphine on terminal dyspnoea. A recent study suggested that glycopyrronium is at least as effective as hyoscine hydrobromide in dealing with death rattle. Finally, a randomized, placebo-controlled, double-blind trial evaluating dextromethorphan identified no significant improvement in pain management in combined treatment with morphine. SUMMARY: Conducting well designed trials in the setting of terminal cancer is complex and ethically questionable. Most data retrieved are based mainly on clinical experience. Further high quality research is required to inform clinical recommendations regarding terminal care.