Nutritional Status and Quality of Life in Hospitalised Cancer Patients Who Develop Intestinal Failure and Require Parenteral Nutrition: An Observational Study.

(1) Background: Malnutrition in cancer patients impacts quality of life (QoL) and performance status (PS). When oral/enteral nutrition is not possible and patients develop intestinal failure, parenteral nutrition (PN) is indicated. Our aim was to assess nutritional status, QoL, and PS in hospitalised cancer patients recently initiated on PN for intestinal failure. (2) Methods: The design was a cross-sectional observational study. The following information was captured: demographic, anthropometric, biochemical and medical information, as well as nutritional screening tool (NST), patient-generated subjective global assessment (PG-SGA), functional assessment of cancer therapy-general (FACT-G), and Karnofsky PS (KPS) data. (3) Results: Among 85 PN referrals, 30 oncology patients (56.2 years, 56.7% male) were identified. Mean weight (60.3 ± 16.6 kg) corresponded to normal body mass index values (21.0 ± 5.1 kg/m2). However, weight loss was significant in patients with gastrointestinal tumours (p < 0.01). A high malnutrition risk was present in 53.3-56.7% of patients, depending on the screening tool. Patients had impaired QoL (FACT-G: 26.6 ± 9.8) but PS indicated above average capability with independent daily activities (KPS: 60 ± 10). (4) Conclusions: Future research should assess the impact of impaired NS and QoL on clinical outcomes such as survival, with a view to encompassing nutritional and QoL assessment in the management pathway of this patient group.

Short bowel syndrome and the impact on patients and their families: a qualitative study.

BACKGROUND: Short bowel syndrome (SBS) is a malabsorptive condition that can result in intestinal failure (SBS-IF). Many patients with SBS-IF require home parenteral nutrition (PN) for survival. However, PN has profound effects on patients and their family members. The present study aimed to understand the lived experience of SBS-IF for patients and their families. METHODS: In-depth semi-structured qualitative interviews were conducted with 15 patients with SBS-IF and five adult family members living with someone with SBS-IF. A patient-centric approach was taken, with a patient steering group providing input and guidance to develop the interview guide. Key concepts were identified using thematic analysis of interview transcripts. RESULTS: Patients' lives were dominated by having SBS-IF. They described physical impacts that included patient-reported signs and symptoms and physical restrictions comprising of restrictions on daily life, actives of daily living and physical functioning. In addition, they encountered emotional impacts with a plethora of negative feelings and social impacts, such as difficulties socialising and maintaining relationships. Patients coped by adapting their life around SBS-IF, having support and adopting an attitude of gratitude and acceptance. Family members were also affected and, along with patients, appreciated the respite of a night off from infusions. CONCLUSIONS: Patients and families face many difficulties with SBS-IF. Healthcare professionals can support patients by facilitating them explore what others have found beneficial; adapting their life around PN, viewing PN with acceptance and trying to cultivate gratitude. Further research into the support required for families may be beneficial.

Palliative home parenteral nutrition in patients with ovarian cancer and malignant bowel obstruction: experiences of women and family caregivers.

BACKGROUND: Malnutrition is a problem in advanced cancer, particularly ovarian cancer where malignant bowel obstruction (MBO) is a frequent complication. Parenteral nutrition is the only way these patients can received adequate nutrition and is a principal indication for palliative home parenteral nutrition (HPN). Giving HPN is contentious as it may increase the burden on patients. This study investigates patients' and family caregivers' experiences of HPN, alongside nutritional status and survival in patients with ovarian cancer and MBO. METHODS: This mixed methods study collected data on participant characteristics, clinical details and body composition using computed tomography (CT) combined with longitudinal in-depth interviews underpinned by phenomenological principles. The cohort comprised 38 women with ovarian cancer and inoperable MBO admitted (10/2016 to 12/ 2017) to a tertiary referral hospital. Longitudinal interviews (n = 57) were carried out with 20 women considered for HPN and 13 of their family caregivers. RESULTS: Of the 38 women, 32 received parenteral nutrition (PN) in hospital and 17 were discharged on HPN. Nutritional status was poor with 31 of 33 women who had a CT scan having low muscle mass, although 10 were obese. Median overall survival from admission with MBO for all 38 women was 70 days (range 8-506) and for those 17 on HPN was 156 days (range 46-506). Women experienced HPN as one facet of their illness, but viewed it as a "lifeline" that allowed them to live outside hospital. Nevertheless, HPN treatment came with losses including erosion of normality through an impact on activities of daily living and dealing with the bureaucracy surrounding the process. Family caregivers coped but were often left in an emotionally vulnerable state. CONCLUSIONS: Women and family caregivers reported that the inconvenience and disruption caused by HPN was worth the extended time they had at home.

Messy Play Therapy in the Treatment of Food Aversion in a Patient With Intestinal Failure: Our Experience.

BACKGROUND: Food aversion (FA) is an eating behavior where children refuse solid or fluid intake. FA can compromise the weaning off parenteral nutrition (PN) in children with intestinal failure (IF), reducing their quality of life (QoL). Around 25% of children with IF experience FA, but few data are available on interventions to get over FA. Messy play therapy (MPT) uses sensory activities to provide another meaningful avenue for learning in children by creating a fun way to experience new textures. This study aims to assess the efficacy of MPT in FA. METHODS: Demographic data and MPT intervention were retrospectively recorded between 2004 and 2017. Food was categorized by tastes and textures. Data are expressed as median and interquartile range (25%-75%). RESULTS: Twelve children were identified. MPT was started at 9 (6-16) months with an enrolling time within the program of 10.11 (7.75-12.5) months. MPT was ended after 19.5 (16.75-28.5) months, and all patients achieved tolerance to oral diet. Significant improvement in savory (P = .001), sweet (P = .002), and mixed texture (P = .001) of food intake was reported. Better QoL and mealtimes with family were reported at median follow-up of 39 (24-56) months. CONCLUSIONS: MPT seems to be a positive intervention to overcome FA. In our experience, the children have gone from not tolerating any intake to tolerating an oral diet, which means enjoying their mealtimes. Further studies are needed to evaluate the effectiveness of MPT in a larger scale of patients.

Withholding versus withdrawing treatment: artificial nutrition and hydration as a model.

PURPOSE OF REVIEW: This article explores various cultural perspectives of withholding and withdrawing of life-sustaining treatment utilizing a case involving artificial nutrition and hydration (ANH) to guide ethical discussion. RECENT FINDINGS: In the United States, there is a general consensus in the medical, ethical, and legal communities that the withholding and withdrawing of life-sustaining treatment are morally equivalent at the end of life. Despite this consensus, the withdrawal of treatment is still emotionally difficult, particularly with ANH. Recent literature challenges the evidence base that feeding tubes for people with advanced dementia lead to significant harm. In light of these new findings, we will reconsider end-of-life decision making that concerns ANH to determine whether these new findings undermine previous ethical arguments and to consider how to best educate and support patients and families during the decision-making process. SUMMARY: Despite many believing that there is no ethical, medical, or moral difference between withholding and withdrawing of life-sustaining treatment, there is no denying it is emotionally taxing, particularly withdrawal of ANH. Upholding the patient's values during high-quality shared decision making, facilitating rapport, and utilizing time limited trials will help, even when treatment is considered medically ineffective.

Comentario al caso: Nutrición en paciente oncológico / Commentary on the case: Nutrition in oncological patient

No disponible

[Qualitative and collaborative research with cancer patients. Experience narratives of treatments for peritoneal carcinomatosis]. / Une recherche qualitative et collaborative auprès de patients atteints de cancer. Récits d'expérience des traitements de la carcinose péritonéale.

UNLABELLED: This CORCAN study is concerned with the way patients hospitalised for peritoneal carcinosis perceive surgical treatment and hyperthermic intraperitoneal chemotherapy (HIPEC). OBJECTIVES: (1) To identify and analyse, using concepts of social representation and accounts of the illness, characteristics of the way this treatment is experienced; (2) to inform doctors and healthcare workers about patients' representations, with a view to adjusting the treatment, the care and the information given to patients. METHODOLOGY: Fifty-eight directive and nondirective interviews were conducted longitudinally with 21 patients (13 women and 7 men) hospitalised for treatment by cell killing and HIPEC. RESULTS: Five important elements of concern were raised and discussed by the patients at different stages of the disease, then reported and discussed with the doctors and healthcare workers. These were patients' experiences of: the hyperthermic intraperitoneal chemotherapy (HIPEC), randomisation, intensive care, the effects of surgery on the digestive system, reorganising their diet, and returning home.

Resultados en la prescripción electrónica de nutriciones parenterales tras la implantación de un programa informático. Análisis de costes y prescripción / Results in the parenteral nutritions electronic prescription following implementation of a computer program. Cost analysis and prescription

Introducción. Cada vez son más los hospitales que incorporan en su tecnología software informáticos capaces de elaborar una nutrición eficaz, segura y ajustada a las necesidades de los pacientes con el fin de minimizar errores. Sin embargo, estos programas no siempre disponen de un manejo intuitivo, lo que en ocasiones, pueden comportar diversas dificultades que los haga estar infrautilizados y en consecuencia, el número de prescripciones puede verse disminuido. Objetivo: Evaluar la reducción en la prescripción de nutriciones parenterales y el impacto económico que ha supuesto en nuestro centro, tras la implantación de un software informático de prescripción electrónica para nutriciones parenterales. Material y métodos. Se utilizó un software informático de Fresenius-Kabi España (v. 1.8/2011) como base de datos, para clasificar las NP prescritas durante los últimos 24 meses, teniendo en cuenta la implantación de la herramienta informática. Este procedimiento se usó para determinar la disminución en la prescripción de nutriciones. Resultados. Durante el año 2013 se prescribieron un total de 3.530 nutriciones parenterales, mientras que en el mismo periodo de 2014, las nutriciones prescritas fueron 2.622. Esta diferencia de 908 prescripciones, supuso un ahorro económico de 22.230,03 Euros

Introduction. Increasingly hospitals that incorporate in its software technology computer capable of developing a nutrition effective, safe and adjusted to the needs of patients in order to minimize errors. However, these programs do not always have an intuitive, sometimes, may lead to difficulties making them to be underused and as a result, the number of prescriptions will be decreased. Objective. To evaluate the reduction in prescription of parenteral nutritions and the economic impact that has been in our centre, the introduction of computer software for electronic prescription for parenteral nutritions. Material and method. A computer software of Fresenius-Kabi Spain (v. 1.8/2011) as the database, was used to classify the NP prescribed during the past 24 months, taking into account the implementation of the computer tool. This procedure was used to determine the reduction in prescription of nutritions. Results. During the year 2013 were prescribed a total of 3.530 parenteral nutritions, while in the same period in 2014, prescribed nutritions were 2.622. This difference of 908 prescriptions meant a savings of 22.230,03 Euros

Decision making at the end of life--cancer patients' and their caregivers' views on artificial nutrition and hydration.

PURPOSE: Deciding on artificial nutrition and hydration (ANH) at the end of life (EoL) may cause concerns in patients and their family caregivers but there is scarce evidence regarding their preferences. Therefore, the aim of this study was to assess the impact of factors associated with ANH decision making. METHODS: Prospective, Cross-sectional survey. Adult patients admitted to hospital for symptoms of advanced cancer as well as their family caregivers completed a self-administered questionnaire. Items included personal views and concerns about ANH. Family caregivers additionally recorded their preference for their loved one and, if applicable, previous experience with ANH decisions. RESULTS: Thirty-nine out of sixty-five patients and 30/72 relatives responded. Higher age of the patient was significantly correlated with both the patient's and the relative's decision to forgo ANH (Kruskal-Wallis test, p < 0.01). Thirty-nine percent of patients, 37 % of relatives if deciding for themselves, and 24 % of relatives if deciding on behalf of their loved one opted against ANH; 36, 40 and 52 % preferred artificial hydration (AH) only (χ (2) test, p <0.001), while 23, 23 and 24 %, respectively, wished to receive ANH. Patients felt more confident about decisions on artificial nutrition (AN) than caregivers (T test, p < 0.05) and less concerned about adverse effects of forgoing ANH on pain, agitation and sensation of hunger and thirst (χ (2) test, p < 0.05). Satisfaction of patients with communication regarding forgoing ANH (5.0 ± 2.8 on a Likert scale from 0 to 10) correlated with their confidence (Spearman's rho, p < 0.01). A thorough consultation with the attending physician on ANH issues was the favoured source of support for 77 % of patients and 97 % of relatives. A majority of patients considered their relatives' opinion (67 %) and their own advance directives (62 %) as crucial for making ANH decisions, and 46 % of them had such a document completed. CONCLUSION: Cancer patients and their relatives have similar preferences regarding ANH at the EoL, but relatives are reluctant to withhold AH if deciding for their loved one. While patients seem to be confident with ANH decision making, their caregivers may particularly benefit from discussing ANH options to dissipate fears.

Practice patterns and perceptions about parenteral hydration in the last weeks of life: a survey of palliative care physicians in Latin America.

CONTEXT: Parenteral hydration at the end of life is controversial and has generated considerable debate for decades. OBJECTIVES: To identify palliative care physician parenteral hydration prescribing patterns and factors that influence prescribing levels (PLs) for patients during their last weeks of life. METHODS: A cross-sectional, representative online survey of Latin American palliative care physicians was conducted in 2010. Physicians were asked to report the percentage of their terminally ill patients for whom they prescribed parenteral hydration. Predictors of parenteral hydration PLs were identified using logistic regression analysis. RESULTS: Two hundred thirty-eight of 320 physicians completed the survey (74% response rate). Sixty percent of physicians reported prescribing parenteral hydration to 40%-100% of their patients during the last weeks of life. Factors influencing moderate/high PLs were the following: agreeing that parenteral hydration is clinically and psychologically efficacious (odds ratio [OR] 3.5; 95% confidence interval [CI] 1.5-8.3), disagreeing that withholding parenteral hydration alleviates symptoms (OR 3.3, 95% CI 1.3-8.1), agreeing that parenteral hydration is essential for meeting the minimum standards of care (OR 3.2, 95% CI 1.4-7.5), preferring the subcutaneous route of parenteral hydration for patient comfort and home use (OR 2.9, 95% CI 1.3-6.5), and being younger than 45 years of age (OR 2.6, 95% CI 1.3-5.2). CONCLUSION: The strongest determinant of prescribing patterns was agreement with the clinical/psychological efficaciousness of parenteral hydration. Our results reflect parenteral hydration prescribing patterns and perceptions that substantially differ from the conventional/traditional hospice philosophy. These findings suggest that the decision to prescribe or withhold parenteral hydration is largely based on clinical perceptions and that most palliative care physicians from this region of the world individualize treatment decisions.

A qualitative study of the quality of life of children receiving intravenous nutrition at home.

OBJECTIVES: To discover the views of children with severe intestinal failure treated with intravenous nutrition from early life and who remained heavily dependent on treatment throughout childhood. METHODS: Seven children ages 7 to 17 years (mean 13 years) were interviewed. The diagnoses were enteropathy in 3, extreme short gut in 1, complex (associated mucosal inflammation and dysmotitlity) in 2, and intestinal pseudo-obstruction in 1. They were treated with intravenous nutrition overnight at home that was administered by trained parents using the simplest possible system. The children were individually questioned about their lifestyle and health. Transcripts were analysed using interpretive phenomenological analysis. RESULTS: Children coped well with life with intravenous nutrition (apart from septicaemia in 2 cases), but were troubled when complications of the underlying disease persisted (eg, nocturnal disturbance, stool frequency, abdominal pain). Children were aware that life was restricted (eg, fewer sleepovers with friends, fewer late nights out). There was a high level of family functioning. Older children wished to take care of themselves. The burdens of life with intravenous nutrition appear to be less significant for these children than living with the effects of chronic illness. There was resilience and acceptance in the face of illness-related demands. CONCLUSIONS: This study has found that despite the problems they may face, it is possible for children fed intravenously at home to develop a level of resilience, maintain a positive outlook, and cope well with illness-related demands even when they have had virtually lifelong severe intestinal failure. Families can continue to function well.

Nutritional intervention and quality of life in adult oncology patients.

The evaluation of quality of life (QoL) assesses patients' well-being by taking into account physical, psychological and social conditions. Cancer and its treatment result in severe biochemical and physiological alterations associated with a deterioration of QoL. These metabolic changes lead to decreased food intake and promote wasting. Cancer-related malnutrition can evolve to cancer cachexia due to complex interactions between pro-inflammatory cytokines and host metabolism. Beside and beyond the physical and the metabolic effects of cancer, patients often suffer as well from psychological distress, including depression. Depending on the type of cancer treatment (either curative or palliative) and on patients' clinical conditions and nutritional status, adequate and patient-tailored nutritional intervention should be prescribed (diet counselling, oral supplementation, enteral or total parenteral nutrition). Such an approach, which should be started as early as possible, can reduce or even reverse their poor nutritional status, improve their performance status and consequently their QoL. Nutritional intervention accompanying curative treatment has an additional and specific role, which is to increase the tolerance and response to the oncology treatment, decrease the rate of complications and possibly reduce morbidity by optimizing the balance between energy expenditure and food intake. In palliative care, nutritional support aims at improving patient's QoL by controlling symptoms such as nausea, vomiting and pain related to food intake and postponing loss of autonomy. The literature review supports that nutritional care should be integrated into the global oncology care because of its significant contribution to QoL. Furthermore, the assessment of QoL should be part of the evaluation of any nutritional support to optimize its adequacy to the patient's needs and expectations.

[Should hydration and artificial nutrition be accepted as a palliative care?]. / Se considera la hidratación y la nutrición artificial como un cuidado paliativo?

BACKGROUND: Ethical considerations are becoming more and more common in clinical practice. There is no unanimous agreement on which measures should be deemed as basic care, specially regarding hydration and artificial nutrition. AIM: To know the opinion of lay people and health professionals, stratified according to their university degree, about which palliative measures, including hydration and artificial nutrition, should be judged as palliative care. METHODS: A descriptive transversal study has been designed to know the opinion of 256 subjects: 91 users of the National Health System (NHS), 80 nurses, 47 pharmacists and 38 physicians. A questionnaire examined which of the following measures should be considered as palliative care: hygiene, analgesia, pressure ulcer care, position change, sedation, oxygen administration, urinary catheter, hydration, enteral and parenteral nutrition. RESULTS: More than 50% of the participants think that all the proposed measures can be considered as a palliative care, except parenteral nutrition. There is unanimous agreement to accept analgesia, pressure ulcer care, position change and enteraL nutrition as basic care, but there is disagreement in relation to hygiene (p = 0.000), sedation (p = 0.005), oxygen administration (p = 0.007), urinary catheter (p = 0.011) and parenteral nutrition (p = 0.000). There were not differences of opinion after adjusting for age, sex, religious beliefs, and length of professional experience among the individuals that answered the questionnaire. CONCLUSION: There is no agreement on which measures should be considered as palliative care. Opinions differ regarding hygiene, sedation, oxygen administration, urinary catheterisation and parenteral nutrition. In comparison to enteral nutrition, many responders believe that parenteral nutrition is a therapeutic option. The opinions shown in this questionnaire were independent from the demographic characteristics of the subjects that answered it.

¿Se considera la hidratación y la nutrición artificial como un cuidado paliativo? / Should hydration and artificial nutrition be accepted as a palliative care?

Fundamento: Cada vez son más frecuentes los dilemas éticos en la práctica clínica. No existe acuerdo unánime, en especial en lo relativo a la hidratación y nutrición artificial, sobre que medida debe ser considerada como un cuidado básico. Objetivo: Conocer la opinión del personal sanitario, diferenciando la titulación universitaria, sobre que medidas de cuidado paliativo, incluyendo la hidratación y la nutrición artificial, deben ser consideradas como cuidado paliativo. Material y metodos: Se ha diseñado un estudio de campo descriptivo transversal, en el que se analiza la opinión de 256 individuos mediante las respuestas a un cuestionario: 91 usuarios del Sistema Nacional de Salud, 80 enfermeras, 38 médicos y 47 farmacéuticos sobre qué medida de las siguientes debe ser considerada como cuidado paliativo: higiene, analgesia, cuidado de las escaras, cambios posturales, sedación, oxigenoterapia, sondaje urinario, hidratación intravenosa, nutrición enteral y nutrición parenteral. Resultados: Más del 50% de los encuestados valora todas las medidas interrogadas como paliativas, a excepción de la nutrición parenteral. Entre los diversos grupos no existen diferencias en considerar a la analgesia, cuidado de escaras, cambios posturales, sueroterapia y administración de nutrición enteral como un cuidado básico, pero sí existen diferencias de opinión sobre la higiene (p = 0,000), sedación (p = 0,005), oxigenoterapia (p = 0,007), sondaje urinario (p = 0,011) y nutrición parenteral (p = 0,000). La edad, sexo, creencia religiosa y años de experiencia profesional en el ámbito sanitario del encuestado no influyen los resultados obtenidos. Conclusiones: No existe unanimidad entre los individuos, en qué medida debe ser considerada como cuidado paliativo. Se discrepa en relación a la higiene, la sedación, la oxigenoterapia, el sondaje urinario y la nutrición parenteral. Esta última medida se considera más como una opción terapéutica que la nutrición enteral. La opinión no depende de las características sociodemográficas de la población estudiada (AU)

Background: Ethical considerations are becoming more and more common in clinical practice. There is no unanimous agreement on which measures should be deemed as basic care, specially regarding hydration and artificial nutrition. Aim: To know the opinion of lay people and health professionals, stratified according to their university degree, about which palliative measures, including hydration and artificial nutrition, should be judged as palliative care. Methods: A descriptive transversal study has been designed to know the opinion of 256 subjects: 91 users of the National Health System (NHS), 80 nurses, 47 pharmacists and 38 physicians. A questionnaire examined which of the following measures should be considered as palliative care: hygiene, analgesia, pressure ulcer care, position change, sedation, oxygen administration, urinary catheter, hydration, enteral and parenteral nutrition. Results: More than 50% of the participants think that all the proposed measures can be considered as a palliative care, except parenteral nutrition. There is unanimous agreement to accept analgesia, pressure ulcer care, position change and enteraL nutrition as basic care, but there is disagreement in relation to hygiene (p = 0.000),sedation (p = 0.005), oxygen administration (p = 0.007), urinary catheter (p = 0.011) and parenteral nutrition (p = 0.000). There were not differences of opinion after adjusting for age, sex, religious beliefs, and length of professional experience among the individuals that answered the questionnaire. Conclusion: There is no agreement on which measures should be considered as palliative care. Opinions differ regarding hygiene, sedation, oxygen administration, urinary catheterisation and parenteral nutrition. In comparison to enteral nutrition, many responders believe that parenteral nutrition is a therapeutic option. The opinions shown in this questionnaire were independent from the demographic characteristics of the subjects that answered it (AU)

Representações sociais sobre a alimentação por sonda obtidas de pacientes adultos hospitalizados / Social representations associated with tube feeding among adult hospitalized patients

Identificar e compreender as representações de pacientes sobre alimentação por sonda. Entrevista aberta com 16 pacientes em uso de sondas para alimentação. A análise das entrevistas foi fundamentada na análise de discurso. O referencial teórico adotado foi a Teoria das Representações Sociais. Identificou-se a existência de uma trajetória, na qual as representações vão sendo reorganizadas e reconstruídas pela experiência, para tornar tolerável esse tratamento, começando quando o paciente se depara com a necessidade do uso, passando pela experiência do uso e, finalmente, tendo que se decidir pela continuidade ou não do uso no ambiente domiciliar. Dentre as representações encontradas, existem algumas que contribuem para a adesão e outras para a rejeição a esse tratamento. Conhecendo as idéias e crenças positivas e negativas sobre esse tratamento, torna-se possível atuar de forma mais direcionada a fim de aumentar a adesão ao tratamento e satisfação com ele

[Nurse experiencing care of patient under parenteral nutrition]. / A enfermeira vivenciando o cuidar do paciente em nutrição parenteral.

It is about a research with the objective of understanding the experience of the nurse in the process of taking care being the caregiver of the patient under parenteral nutrition. We have utilized the Symbolic Interactionism and the Theory Grounded in Data for the theoretical-methodological referral. Ten nurses who have experienced this praxis in a public hospital in the city of Fortaleza, Ceará, have taken part of the study. The data collection was performed through participant observation and semi-structured interview. We have identified the phenomenon that expresses the nurse experiencing the care by showing attitudes, feelings and meanings regarding care.