Indiana University-Purdue University Indianapolis (IUPUI) / The purpose of this study is to advance theoretical understanding of how an adolescent with incurable cancer prepares for end-of-life (EOL). A theoretical model was developed to link awareness, acceptance, and willingness to take action to EOL preparedness (knowledge about EOL, acknowledgement of grief and emotion, identification of the meaning of death and spirituality, and conceptualization of personal plan) and communication about EOL preferences and priorities; and to determine impact on quality of life (QOL). Method: Case study research method was used to guide data collection and analyses on two adolescent cases across two time points. The theoretically-based model was developed prior to data collection and based on research studies conducted in adult and pediatric EOL literature. Multiple sources of data were collected and triangulated to assess relationships between qualitative and quantitative data. Through an iterative process of pattern matching, data were compared to constructs in the conceptual model for both across cases, and across time. Results: Results indicate awareness (cognitive recognition of incurable prognosis) and acceptance (emotional acknowledgement of incurable prognosis) are both fluid concepts and varied within each time point and across time. Contextual factors (demographic, environmental, personal, and social support characteristics) influenced awareness, EOL preparedness, and willingness to take action; and directly influenced QOL. Level of awareness influenced involvement in EOL preparedness. Information preference and willingness to engage in discussions regarding knowledge about EOL were incongruent with actual knowledge about EOL. Adolescents demonstrated a willingness to discuss potential disease progression in order to conceptualize an EOL advanced care plan regardless of emotional acceptance of incurable prognosis. In contrast, acknowledgment of grief and emotions, and identification of the meaning of death and spirituality were related to acceptance of incurable prognosis and further determined conceptualization of immediate EOL priorities. Social constraint or lack of ability to discuss prognosis, was identified as an important construct that influenced communications. Implications: This study provides increased theoretical understanding of how adolescents living with advanced cancer confront EOL. Insight led to theory modification and expansion which may serve as a guide for future research to assist clinicians caring for adolescents living with incurable cancer. Victoria L. Champion, PhD, RN, FAAN, Chair

A diminuição da sobrevida registrada para pacientes com câncer de laringe nas últimas décadas pode estar relacionada a mudanças nos padrões de tratamento. Na literatura recente, há uma polëmica sobre o tratamento de tumores laríngeos em estádio clínico T3 devido ao emprego disseminado de estratégias de preservação de orgãos (Hoffman, 2006). Embora os critérios de inclusão para o grupo de preservação de órgãos tendam a selecionar tumores de \"baixo volume\", a escolha de uma determinada estratégia depende também da formação profissional do médico, da experiência e da infraestrutura do hospital e dos desejos dos pacientes. Essa consideração pressupõe uma distribuição homogênea dos pacientes entre os grupos de tratamento. No entanto, deve-se destacar o papel prognóstico das variáveis relacionadas ao tumor, ao paciente e à opção terapêutica na prática clínica. Objetivo: Avaliar as características clínicas, patológicas e a expressão de biomarcadores ativados pela via do EGFR em uma série de casos em relação à evolução e ao prognóstico. Metodologia: No presente estudo, 145 pacientes consecutivos com diagnóstico de carcinomas avançados de laringe cT3N0-3M0 foram analisados retrospectivamente. Foram incluídos casos de carcinoma epidermoide de supraglote, glote, subglote e transglotte, tratados em uma única instituição por quatro diferentes estratégias de tratamento (cirurgia exclusiva; cirurgia mais terapia adjuvante; radioterapia exclusiva, e radioquimioterapia). Os dados foram obtidos a partir do Registro de Câncer do Hospital A.C. Camargo, São Paulo (1990-2007). Uma série de variáveis clínicas e patológicas foi avaliada pelo métodos de Kaplan-Meier e de regressão de Cox. Opções de tratamento também foram avaliadas como fator prognóstico. Associações entre características clínico-patológicas do tumor e sobrevida, sobrevida livre de doença e risco de morte, foram investigadas. Resultados: Três variáveis clínicas, as variáveis terapêuticas e cinco variáveis patológicas, foram estatisticamente significativas na estimativa de sobrevida específica em 5 anos (CS-5a). A sobrevida foi influenciada negativamente pela invasão do tumor primário do espaço pré-epiglótico (45,5%, P = 0,003), pescoço clínico (cN) positivo (37,6%, P = 0,031), invasão da área retrocricóide (0,0%, P = 0,009) , invasão linfática (44,1%, P = 0,015), extravasamento capsular (43,1%, P = 0,003), pescoço patológico (pN) positivo (42,9%, P = 0,001), linfonodos positivos nos níveis cervicais IV-VI (33,3%, P = 0,008), margens cirúrgicas positivas (22,2%, P = 0,001). O tratamento teve impacto na sobrevida (CS-5a): a taxa foi de 51,6%, quando houve tratamento adjuvante (devido a achado patológico positivo na peça operatória), diminuiu até 41,5% no grupo de radioterapia exclusiva (P = 0,039). Cirurgia exclusiva e radioquimioterapia influenciaram a sobrevida de maneira semelhante (74,0% ; 77,5%). Considerando variáveis clínicas e terapêuticas, resultaram ser fatores prognósticos independentes: invasão do espaço paraglótico (RR multivariado 1,92; IC 1,02-3,61), pescoço clínico (cN) positivo (RR multivariado 2,24; IC 1,11-4,50), invasão do espaço pré-epiglótico (RR multivariado 2,65; IC 1,46-4,81) e tratamento radioterapico exclusivo (RR multivariado 2,88; IC 1,31-6,30); incluindo as variáveis patológicas, resultaram ser fatores prognósticos independentes achados patológicos de extravasamento capsular (RR multivariado 3,09; IC 1,56-6,12) e margens cirúrgicas comprometidas (RR multivariado 3,45; IC 1,11-10,75). A investigação de expressão imunoistoquímica de dez biomarcadores das vias de transdução de sinal ativadas pelo receptor tirosina quinase Erb B (EGFR, Erb B2, Erb B3, Erb B4, RAS, MEK, ERK, mTOR, PTEN, p53) mostrou associação entre expressão imunoistoquímica positiva de ErbB3 e ErbB4 e expressão de biomarcadores da via MAPKs e AKT-PI3K (MEK e mTOR). A positividade desses biomarcadores, ou seja, a desregulação da rede ErbB foi associada à invasão linfática, ponto de partida do acometimento linfonodal que resultou ser fator prognóstico independente entre as variáveis clínicas e patológicas (extravamento capsular). Conclusões: Entre as variáveis clínicas e terapêuticas, resultaram ser fatores prognósticos independentes: invasão do espaço paraglótico, pescoço clínico (cN) positivo, invasão do espaço pré-epiglótico e tratamento radioterápico exclusivo. Quando foram incluídas as variáveis patológicas, resultaram ser fatores prognósticos independentes achados patológicos de extravasamento capsular e margens cirúrgicas comprometidas. A positividade dos biomarcadores estudados (desregulação da rede ErbB), foi associada a invasão linfática. / The decreased survival recorded for patients with laryngeal cancer in the last decades may be related to changes in patterns of management; in literature a recent debate has been dedicated to the management of clinical stage T3 due to the disseminated use of organ preservation strategies (Hoffman, 2006). Although inclusion criteria for organ preservation group tends to select \"low volume\" tumors, in clinical practice the choice of a determined strategy depends also to medical and hospital experience and infrastructure and on patients\' wishes. This consideration may suppose an homogenous distribution of the patients among the treatment groups, however in clinical practice several clinico-pathological and therapeutic prognostic factors are considered for therapeutic decision. Objectives: Evaluate clinical and pathological characteristics and expression of biomarkers activated by the EGFR cascade in a case series and analise the association with outcomes and prognosis. Materials and method: In the present study 145 consecutive patients with diagnosis of laryngeal advanced carcinomas, cT3N0-3M0, were retrospectively analyzed, including cancer of the supraglottis, glottis, subglottis and trans-glottis, treated in a single institution by four different treatment strategies (exclusive surgery, surgery and adjuvant therapy, radiotherapy alone, and radiochemotherapy). Data was obtained from the Cancer Registry, Hospital AC Camargo, São Paulo (1990-2007). A set of clinical and pathological variables were assessed by Kaplan-Meier and Cox regression methods. Treatment option was also assessed as prognostic factor. Associations between clinical-pathological features of the tumor and survival, disease free-survival and risk of death, were investigated. Results: Three clinical variables, the therapeutic variable and five pathological variables, were statistically significant in estimating cancer specific survival at 5 years (CS-5y). Survival was negatively influenced by primary tumour spreading as filling of pre-epiglottic space (45.5%, P = 0.003), clinical neck (cN) positive (37.6%, P = 0.031), invasion of retrocricoid area (0.0%, P = 0.009), lymphatic invasion (44.1%, P = 0.015), extra-capsular nodal spread (43.1%, P = 0.003), pathological neck (pN) positive (42.9%, P = 0.001), positive IV-VI levels cervical nodes (33.3%, P = 0.008), positive surgical margins (22.2%, P = 0.001); treatment impacted on CS-5y, it decreases at 51.6% if adjuvant treatment (positive pathological finding on operative specimen), up to 41.5% in exclusive radiotherapy group (P = 0.039); exclusive surgery and radio-chemotherapy influenced survival similarly (74.0%; 77.5%). Among clinical e therapeutic variables, invasion of paraglottic space (HR adjusted 1.92; IC 1.02-3.61), positive clinical neck (cN) (HR adjusted 2,24; IC 1,11-4,50), invasion of pre-epiglottic space (HR adjusted 2,65; IC 1,46-4,81) and exclusive radiotheraphy (RR adjusted 2,88; IC 1,31-6,30) resulted to be independent prognostic factors; including pathological variables, extracapsular node invasion (HR adjusted 3,09; IC 1,56-6,12) and positive resection margins (HR adjusted 3,45; IC 1,11-10,75) were independent prognostic factors. Exploration of immunohistochemical expression of ten biomarkers of the signal transduction pathways activated by tyrosine kinases receptor Erb B (EGFR, Erb B2, Erb B3, Erb B4, RAS, MEK, ERK, mTOR, pTEN, p53) showed association between positive immunohistochemical expression of ErbB3 and ErbB4 and biomarkers of MAPKs and AKT-PI3K pathways (MEK and mTOR); the dysregulation of the Erb B network was associated with lymphatic invasion, starting point for lymph-nodes involvement that resulted to be clinical independent prognostic factors. Conclusion: Among clinical and therapeutic variables, the identified independent prognostic factors were: invasion of paraglotic space, clinically positive neck, invasion of pre-epiglotic space and radiotherapy alone. When pathologic variables were included, extracapsular spread and positive surgical margins were identified as independent prognostic factors. Positive results of the studied biomarkers (dysregulation of Erb B network) was associated with lymphatic invasion.

Submitted by Rosina Valeria Lanzellotti Mattiussi Teixeira (rosina.teixeira@unisantos.br) on 2017-03-20T19:58:07Z No. of bitstreams: 1 Thais Laudares Soares Maia.pdf: 2383778 bytes, checksum: 63872173da6a935884954d9df67bf090 (MD5) / Made available in DSpace on 2017-03-20T19:58:07Z (GMT). No. of bitstreams: 1 Thais Laudares Soares Maia.pdf: 2383778 bytes, checksum: 63872173da6a935884954d9df67bf090 (MD5) Previous issue date: 2017-02-21 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / Cancer is a serious public health problem. The World Health Organization (WHO) considers in 27 million new cases of cancer by the year 2030 in the whole world. In Brazil, the frequent diagnose of cancer in advanced phase results in a delay of treatment and invalidate possibilities of cure. Nowadays, the Unique Health System (UHS) advocates to the patients with cancer, without possibilities of cure, the approach in palliative cares that is still recent, limited and little consolidated in health services. The study had as objective to analyse the strategies of confrontation and meanings of cancer without possibility of cure in users of outpatient oncology service from UHS. It was done a qualitative study with semi-structured interviews with 11 participants of both sexes, age from 18 years old and diagnosed with cancer without possibilities of cure. The results were analysed in the following reaction categories: 1) sadness and hope; 2) process of sickness; 3) ¿I don¿t want these words¿; 4) non-clinical context; 5) God¿s will; 6) family comfort; 7) sickness and losses; 8) organic and existential pain; 9) psychosocial aspects of sickness; and 10) eminence of death in health services. One identified the need of reflecting about the relational aspects and cares that envolve the patients without possibilities of cure, considering the advance of medicine and of technology and on the other hand, the need to rescue the human relation aspects between health professionals and patients. / O câncer é um grave problema de saúde pública. A Organização Mundial da Saúde (OMS) estima em 27 milhões de novos casos de câncer para o ano de 2030 em todo o mundo. No Brasil, o frequente diagnóstico de câncer em fase avançada resulta no atraso do tratamento e inviabiliza as possibilidades de cura. Atualmente, o Sistema Único de Saúde (SUS) preconiza aos pacientes com câncer, sem possibilidades de cura, a abordagem em cuidados paliativos, que ainda é recente, restrita e pouco consolidada nos serviços de saúde. O estudo teve como objetivo analisar as estratégias de enfrentamento e significados do câncer sem possibilidade de cura em usuários de um serviço ambulatorial de oncologia do SUS. Foi realizado estudo qualitativo com entrevistas semiestruturadas com 11 participantes de ambos os sexos, idade a partir de 18 anos e diagnosticados com câncer sem possibilidades de cura. Os resultados foram analisados nas seguintes categorias empíricas: 1) Tristeza e esperança; 2) processo de adoecimento; 3) ¿eu não quero essas palavras¿; 4) contexto não clínico; 5) vontade divina; 6) o conforto da família; 7) adoecimento e perdas; 8) dor orgânica e existencial; 9) aspectos psicossociais do adoecimento; e 10) a eminência da morte nos serviços de saúde. Identificou-se a necessidade de refletir sobre os aspectos relacionais e de cuidados que envolvem os pacientes sem possibilidades de cura, considerando o avanço da medicina e da tecnologia e, por outro lado, o necessário resgate aos aspectos humanísticos da relação entre profissionais de saúde e os pacientes.

The Patient-Centred Assessment of Symptoms and Activities (P-CASA) is a new idiographic, open-ended assessment that examines each individual patient’s symptoms within the context of his or her daily life. P-CASA asks patients for their most important activities, what interferes with these activities, and any coping strategies. This thesis presents the rationale and design of P-CASA and its first validation study. Sixty patients at the Pain and Symptom Management/Palliative Care Clinic of the BC Cancer Agency (Vancouver Island Centre) completed P-CASA and the Edmonton Symptom Assessment System (ESAS), which is the current nomothetic assessment at the Clinic. The results demonstrated that P-CASA was not redundant with ESAS because it assessed (a) information about patients’ activities and coping strategies, which the ESAS does not; (b) all relevant cancer-related symptoms (not just pain or a fixed list); (c) co-occurring symptoms; (d) more specific details and different priorities about symptoms than in their ESAS. / Graduate

A diminuição da sobrevida registrada para pacientes com câncer de laringe nas últimas décadas pode estar relacionada a mudanças nos padrões de tratamento. Na literatura recente, há uma polëmica sobre o tratamento de tumores laríngeos em estádio clínico T3 devido ao emprego disseminado de estratégias de preservação de orgãos (Hoffman, 2006). Embora os critérios de inclusão para o grupo de preservação de órgãos tendam a selecionar tumores de \"baixo volume\", a escolha de uma determinada estratégia depende também da formação profissional do médico, da experiência e da infraestrutura do hospital e dos desejos dos pacientes. Essa consideração pressupõe uma distribuição homogênea dos pacientes entre os grupos de tratamento. No entanto, deve-se destacar o papel prognóstico das variáveis relacionadas ao tumor, ao paciente e à opção terapêutica na prática clínica. Objetivo: Avaliar as características clínicas, patológicas e a expressão de biomarcadores ativados pela via do EGFR em uma série de casos em relação à evolução e ao prognóstico. Metodologia: No presente estudo, 145 pacientes consecutivos com diagnóstico de carcinomas avançados de laringe cT3N0-3M0 foram analisados retrospectivamente. Foram incluídos casos de carcinoma epidermoide de supraglote, glote, subglote e transglotte, tratados em uma única instituição por quatro diferentes estratégias de tratamento (cirurgia exclusiva; cirurgia mais terapia adjuvante; radioterapia exclusiva, e radioquimioterapia). Os dados foram obtidos a partir do Registro de Câncer do Hospital A.C. Camargo, São Paulo (1990-2007). Uma série de variáveis clínicas e patológicas foi avaliada pelo métodos de Kaplan-Meier e de regressão de Cox. Opções de tratamento também foram avaliadas como fator prognóstico. Associações entre características clínico-patológicas do tumor e sobrevida, sobrevida livre de doença e risco de morte, foram investigadas. Resultados: Três variáveis clínicas, as variáveis terapêuticas e cinco variáveis patológicas, foram estatisticamente significativas na estimativa de sobrevida específica em 5 anos (CS-5a). A sobrevida foi influenciada negativamente pela invasão do tumor primário do espaço pré-epiglótico (45,5%, P = 0,003), pescoço clínico (cN) positivo (37,6%, P = 0,031), invasão da área retrocricóide (0,0%, P = 0,009) , invasão linfática (44,1%, P = 0,015), extravasamento capsular (43,1%, P = 0,003), pescoço patológico (pN) positivo (42,9%, P = 0,001), linfonodos positivos nos níveis cervicais IV-VI (33,3%, P = 0,008), margens cirúrgicas positivas (22,2%, P = 0,001). O tratamento teve impacto na sobrevida (CS-5a): a taxa foi de 51,6%, quando houve tratamento adjuvante (devido a achado patológico positivo na peça operatória), diminuiu até 41,5% no grupo de radioterapia exclusiva (P = 0,039). Cirurgia exclusiva e radioquimioterapia influenciaram a sobrevida de maneira semelhante (74,0% ; 77,5%). Considerando variáveis clínicas e terapêuticas, resultaram ser fatores prognósticos independentes: invasão do espaço paraglótico (RR multivariado 1,92; IC 1,02-3,61), pescoço clínico (cN) positivo (RR multivariado 2,24; IC 1,11-4,50), invasão do espaço pré-epiglótico (RR multivariado 2,65; IC 1,46-4,81) e tratamento radioterapico exclusivo (RR multivariado 2,88; IC 1,31-6,30); incluindo as variáveis patológicas, resultaram ser fatores prognósticos independentes achados patológicos de extravasamento capsular (RR multivariado 3,09; IC 1,56-6,12) e margens cirúrgicas comprometidas (RR multivariado 3,45; IC 1,11-10,75). A investigação de expressão imunoistoquímica de dez biomarcadores das vias de transdução de sinal ativadas pelo receptor tirosina quinase Erb B (EGFR, Erb B2, Erb B3, Erb B4, RAS, MEK, ERK, mTOR, PTEN, p53) mostrou associação entre expressão imunoistoquímica positiva de ErbB3 e ErbB4 e expressão de biomarcadores da via MAPKs e AKT-PI3K (MEK e mTOR). A positividade desses biomarcadores, ou seja, a desregulação da rede ErbB foi associada à invasão linfática, ponto de partida do acometimento linfonodal que resultou ser fator prognóstico independente entre as variáveis clínicas e patológicas (extravamento capsular). Conclusões: Entre as variáveis clínicas e terapêuticas, resultaram ser fatores prognósticos independentes: invasão do espaço paraglótico, pescoço clínico (cN) positivo, invasão do espaço pré-epiglótico e tratamento radioterápico exclusivo. Quando foram incluídas as variáveis patológicas, resultaram ser fatores prognósticos independentes achados patológicos de extravasamento capsular e margens cirúrgicas comprometidas. A positividade dos biomarcadores estudados (desregulação da rede ErbB), foi associada a invasão linfática. / The decreased survival recorded for patients with laryngeal cancer in the last decades may be related to changes in patterns of management; in literature a recent debate has been dedicated to the management of clinical stage T3 due to the disseminated use of organ preservation strategies (Hoffman, 2006). Although inclusion criteria for organ preservation group tends to select \"low volume\" tumors, in clinical practice the choice of a determined strategy depends also to medical and hospital experience and infrastructure and on patients\' wishes. This consideration may suppose an homogenous distribution of the patients among the treatment groups, however in clinical practice several clinico-pathological and therapeutic prognostic factors are considered for therapeutic decision. Objectives: Evaluate clinical and pathological characteristics and expression of biomarkers activated by the EGFR cascade in a case series and analise the association with outcomes and prognosis. Materials and method: In the present study 145 consecutive patients with diagnosis of laryngeal advanced carcinomas, cT3N0-3M0, were retrospectively analyzed, including cancer of the supraglottis, glottis, subglottis and trans-glottis, treated in a single institution by four different treatment strategies (exclusive surgery, surgery and adjuvant therapy, radiotherapy alone, and radiochemotherapy). Data was obtained from the Cancer Registry, Hospital AC Camargo, São Paulo (1990-2007). A set of clinical and pathological variables were assessed by Kaplan-Meier and Cox regression methods. Treatment option was also assessed as prognostic factor. Associations between clinical-pathological features of the tumor and survival, disease free-survival and risk of death, were investigated. Results: Three clinical variables, the therapeutic variable and five pathological variables, were statistically significant in estimating cancer specific survival at 5 years (CS-5y). Survival was negatively influenced by primary tumour spreading as filling of pre-epiglottic space (45.5%, P = 0.003), clinical neck (cN) positive (37.6%, P = 0.031), invasion of retrocricoid area (0.0%, P = 0.009), lymphatic invasion (44.1%, P = 0.015), extra-capsular nodal spread (43.1%, P = 0.003), pathological neck (pN) positive (42.9%, P = 0.001), positive IV-VI levels cervical nodes (33.3%, P = 0.008), positive surgical margins (22.2%, P = 0.001); treatment impacted on CS-5y, it decreases at 51.6% if adjuvant treatment (positive pathological finding on operative specimen), up to 41.5% in exclusive radiotherapy group (P = 0.039); exclusive surgery and radio-chemotherapy influenced survival similarly (74.0%; 77.5%). Among clinical e therapeutic variables, invasion of paraglottic space (HR adjusted 1.92; IC 1.02-3.61), positive clinical neck (cN) (HR adjusted 2,24; IC 1,11-4,50), invasion of pre-epiglottic space (HR adjusted 2,65; IC 1,46-4,81) and exclusive radiotheraphy (RR adjusted 2,88; IC 1,31-6,30) resulted to be independent prognostic factors; including pathological variables, extracapsular node invasion (HR adjusted 3,09; IC 1,56-6,12) and positive resection margins (HR adjusted 3,45; IC 1,11-10,75) were independent prognostic factors. Exploration of immunohistochemical expression of ten biomarkers of the signal transduction pathways activated by tyrosine kinases receptor Erb B (EGFR, Erb B2, Erb B3, Erb B4, RAS, MEK, ERK, mTOR, pTEN, p53) showed association between positive immunohistochemical expression of ErbB3 and ErbB4 and biomarkers of MAPKs and AKT-PI3K pathways (MEK and mTOR); the dysregulation of the Erb B network was associated with lymphatic invasion, starting point for lymph-nodes involvement that resulted to be clinical independent prognostic factors. Conclusion: Among clinical and therapeutic variables, the identified independent prognostic factors were: invasion of paraglotic space, clinically positive neck, invasion of pre-epiglotic space and radiotherapy alone. When pathologic variables were included, extracapsular spread and positive surgical margins were identified as independent prognostic factors. Positive results of the studied biomarkers (dysregulation of Erb B network) was associated with lymphatic invasion.

As a life-limiting illness mediated by rapid advancements in biomedical technologies, metastatic breast cancer (MBC) now presents in increasingly unexpected ways where women are living longer. These women’s lives may not fit well with established healthcare and societal understandings of an advanced breast cancer, including disease progression and prognosis. This qualitative inquiry aims to think differently about women’s daily lives with an ongoing MBC. While also considering the underexplored context of these women living in smaller communities. I explored communities on Central Vancouver Island, which is on the west coast of British Columbia, Canada. The research question directing my inquiry was: how are women, who are living with MBC as a life-limiting illness over an extended period, produced as both living and dying subjects? Informing this research was a feminist relational materialist approach with a healthcare practitioner orientation, primarily informed by Braidotti. I used multiple data collection methods centred around sequential interviews with 14 women who had been living relatively well with MBC for at least two years. Working with relational materialist and post qualitative principles, analysis disclosed the importance of temporal pulses and bodily transpositions in women’s lives. Temporal pulses speak to how time was laden with tensions such that a distinctive part of living with ongoing MBC was an embodied sense of fluctuating time. There was also the idea as to how, at any given moment, women could bodily know their illness and mortality through varying frequencies of the presence and/or absence of markers of living and dying, often at the same time. Bodily transpositions speak to how life-limiting illness was not so much about women moving from one set of circumstances to another as part of a clean-edged transition. Rather, the women navigated daily life with few set waymarkers. Within this context, ‘hope’ took on new forms and living with their advanced breast cancer became a kind of endurance demarcated by what I refer to as generative living. These findings call into question the ways in which MBC gets talked about in categorical terms as palliative or end of life, and/or as chronic. Findings are an opportunity for healthcare practitioners, policymakers, and interdisciplinary leaders to further understand MBC specific to our contemporary context. Project findings renew discussions of how best to support women’s needs, including the ways MBC is talked about. There is also the opportunity to direct further research into MBC as an example of today’s shifting boundaries of living and dying (which I am framing as living<=>dying). / Graduate

Bakgrund: ​​Att drabbas av avancerad cancer är omvälvande för såväl patient som anhörig. Avancerad cancer tillhör den grupp som inte går att bota, därför inleds palliativ vård. Denna vård delas upp i två steg: tidig palliativ vård samt vård i livets slutskede. Livets slutskede syftar till den sista tiden i livet och fokuserar på att symtomlindra och skapa en meningsfull sista tid. ​Många anhöriga världen över väljer att vårda patienten själv alternativt i samarbete med vårdpersonal.​ Syfte: Syftet var att beskriva anhörigvårdares erfarenheter av att vara nära och vårda en person med avancerad cancer i livets slutskede. Metod: I detta arbete har en litteraturöversikt genomförts, med åtta kvalitativa och två kvantitativa studier. För att finna dessa studier användes databaserna PubMed och CINAHL Complete. Studierna kvalitetsgranskades utifrån fem av Fribergs 13–14 frågor för kvalitetsgranskning. Resultat: Tre teman framkom i resultatet. Det första temat var Dialogens betydelse för vårdandet vilket beskrev vikten av kommunikation mellan anhörigvårdare, patient och vårdpersonal. Det andra temat var Utmaningar anhörigvårdare möter i vårdandet vilket beskrev etiska dilemman och yttre faktorer som påverkade vårdandet. Det tredje temat var Känslor kopplade till att vårda vilket beskrev den emotionella lasten anhörigvårdare upplevde under vårdandet. Slutsats: Brist på kommunikation och information från vårdpersonal medförde otrygghet i vårdrelationen mellan anhörigvårdare, patient och vårdpersonal. Att vara anhörigvårdare var både fysiskt och psykiskt påfrestande, vilket påverkade det vardagliga livet. Jobb, socialt umgänge och deras egen hälsa var inte längre i prioritet, vilket skapade oro och ångest. Anhörigvårdare utsattes för etiska utmaningar under vårdandet, exempelvis beslutsfattande kring patientens fortsatta vård. Anhörigvårdare hade önskat fler stödinsatser från hälso- och sjukvård. Ökade stödinsatser hade bidragit till ett minskat lidande på individnivå och besparingar på resurser och kostnader på samhällsnivå. / Background: Experiencing advanced cancer is tumultuous for both the patient and their families. Advanced cancer belongs to the group that cannot be cured, thus initiating palliative care. This care is divided into two stages: early palliative care and end-of-life care. The end-of-life stage refers to the final period of life and focuses on symptom relief and creating a meaningful last phase. Many families worldwide choose to care for the patient themselves or in collaboration with healthcare professionals. Aim: The aim was to describe the experiences of family caregivers who are close to and care for a person with advanced cancer at the end of life. Method: In this study, a literature review was conducted, comprising eight qualitative and two quantitative studies. To find these studies, the databases PubMed and CINAHL Complete were utilized. The studies were quality assessed based on five of Friberg's 13–14 questions for quality assessment. Results: Three themes emerged in the findings. The first theme was the Importance of Dialogue in Caregiving, which emphasized the significance of communication between family caregivers, patients, and healthcare professionals. The second theme was Challenges Faced by Family Caregivers in Caregiving, which described ethical dilemmas and external factors influencing caregiving. The third theme was Emotions Associated with Caregiving, which depicted the emotional burden experienced by family caregivers during caregiving. Conclusions: Lack of communication and information from healthcare professionals led to insecurity in the care relationship between family caregivers, patients, and healthcare providers. Being a family caregiver was both physically and mentally demanding, affecting everyday life. Jobs, social interactions, and their own health were no longer priorities, leading to worry and anxiety. Family caregivers faced ethical challenges in caregiving, such as decision-making regarding the patient's ongoing care. They wished for more support from the healthcare system. Increased support would have contributed to reduced suffering at the individual level and savings in resources and costs at the societal level.

Introdução. Embora existam diferentes estratégias para a prestação de cuidados paliativos ao paciente com câncer, pouco se conhece sobre a efetividade desses modelos. Objetivos. Comparar os efeitos da equipe de cuidado paliativo integrada ao cuidado tradicional com o cuidado tradicional sozinho no controle de sintomas em paciente com câncer avançado hospitalizado. Método. Estudo longitudinal composto por dois grupos não randomizados. 73 pacientes foram admitidos para a equipe de cuidado paliativo integrada ao cuidado tradicional (Grupo ECP) e comparados a 75 atendidos no modelo de cuidado tradicional (Grupo CT). Os sintomas foram avaliados pela Escala de Avaliação de Sintomas de Edmonton (ESAS), a satisfação por escala numérica verbal (0-10), a funcionalidade pela Escala de Desempenho Funcional Físico Karnofsky (KPS) e a adequação analgésica pelo Índice de Manejo da Dor (IMD). Os pacientes foram avaliados na admissão, após 24 e 48 horas. O desfecho primário foi a melhora clinica significativa de 2 pontos na intensidade da dor e da náusea em 48 horas, comparados com a admissão. Os dados demográficos, os sintomas e sua redução foram comparados entre os Grupos pelo Teste Exato de Fisher ou Mann Whitney. O Teste de Wilcoxon analisou alterações dos sintomas intragrupos. A regressão múltipla de Poisson controlou fatores de confusão para a melhora do sintoma. O nível de significância adotado foi de 5%. Resultados. A prevalência de sintomas foi alta em ambos os grupos: no Grupo ECP a variação foi de 43.8% (depressão) a 87.7% (sensação de bem estar), e no Grupo CT, de 24% (dispneia) a 85.5% (dor). A magnitude dos sintomas, pelo escore da mediana, foi importante em ambos os Grupos: na admissão, no Grupo ECP, variou entre 5.5 (sensação de bem estar) a 8.0 (ansiedade, apetite, constipação e tristeza), e no Grupo CT, variou de 6.0 (sensação de bem estar e dispneia) a 9.0 (perda do apetite). A mediana de sobrecarga de sintomas, avaliada pelo ESAS, foi de 50.0 em ambos os grupos. Na análise de 24 horas (intragrupo), no Grupo ECP cinco sintomas (dor, náusea, perda do apetite, dispneia, prejuízo do sono) e sobrecarga de sintomas foram reduzidos (p<0.05), enquanto no Grupo Grupo CT três sintomas (dor, náusea e prejuízo do sono) foram reduzidos (p<0.05). Na análise de 48 horas (intragrupo), dez sintomas e sobrecarga de sintomas no Grupo ECP foram reduzidos (p<0.05), enquanto quatro sintomas melhoraram no Grupo CT (p<0.05). A regressão múltipla mostrou que a dor (RR= 2.2 [IC95%1.27-3.81]) e bem estar (RR=4.6 [IC95% 1.34-15.88]) reduziram 2 pontos e foi favorável somente no Grupo ECP. Verificou-se melhor adequação da analgesia no Grupo ECP comparado ao CT (p<0.05). A satisfação do doente foi elevada e similar em ambos os grupos. Conclusão. Os doentes de ambos os grupos mostraram grande sobrecarga de sintomas e somente o sintoma dor foi adequadamente controlado pelo Grupo ECP. Os resultados encontrados demandam análise de fatores da estratégia de tratamento que possam melhorar a efetividade das ações, como avaliação sistematizada dos sintomas em curtos períodos e estratégias que permitam ajuste rápido da terapêutica quando necessário. / Introduction. Although there are many different strategies for provision of palliative care to patients with cancer, little is known about the effectiveness of these modalities. Objective.To compare the effects of a palliative care team integrated with traditional care to traditional care alone on symptom control in inpatients with advanced cancer. Method. Longitudinal study composed of two non-randomized groups. Seventy-three patients were admitted to the palliative care team integrated to traditional care (PCT Group) and compared to 75 patients treated in the traditional care model (TC Group). Symptoms were assessed by the Edmonton Symptom Assessment Scale (ESAS), satisfaction with treatment by the verbal numeric scale (0-10), performance status by the Karnofsky Performance Status Scale (KPS) and analgesic adequacy by the Pain Management Index (PMI). Patients were assessed upon admission, and after 24 and 48 hours. The primary outcomes were significant clinical improvements of 2 points in pain intensity and nausea in 48 hours, compared to admission. The demographic data, symptoms, and reduction in symptoms were compared between the groups by using Fisher\'s or Mann Whitneys Exact Tests. The Wilcoxon test examined the intragroup alteration of symptoms. The Poisson multiple regression controlled for confounding factors of improvement in symptoms. A p-value of 0.05 indicated statistical significance for all analyses. Results. The prevalence of symptoms at admission was high in both groups. In the PCT Group, it ranged from 43.8% (depression) to 87.7% (loss of well-being) and, in the TC Group, it ranged from 24% (dyspnoea) to 85.5% (pain). The magnitude of median score of symptoms was substantial in both groups: at admission for the PCT group, it ranged from 5.5 (sense of well-being) to 8.0 (anxiety, appetite, constipation, sadness), while for the TC Group, it ranged from 6.0 (sense of well-being and dyspnoea) to 9.0 (loss of appetite). The median score of the symptom burden assessed by ESAS was 50.0 in both groups. In 24 hours (intragroup), the PCT Group had significant reductions in intensity of five symptoms (pain, nausea, loss of appetite, dyspnoea, and sleep disturbance) and symptom burden, while the TC Group had significant reductions in intensity of three symptoms (pain, nausea, and sleep disturbance). In 48 hours (intragroup), the PCT Group had significant reductions in intensity of ten symptoms and symptom burden and while the TC Group had significant improve in intensity of four symptoms. Multiple regression analysis showed that pain (RR = 2.2 [95% CI 1.27-3.81]) and loss of well-being (RR = 4.6 [95% CI 1.34-15.88]) were reduced by two points and it was significantly more favourable only in the PCT Group. The PMI revealed better adequacy of analgesia in the PCT Group. Satisfaction was high and similar in both groups. Conclusion. Patients with advanced cancer in both groups showed a pronounced burden of symptoms and only pain was properly controlled in the PCT Group. The results indicate that factors that can improve treatment strategy should be implemented to improve the effectiveness of clinical assistance. Examples of factors that can improve treatment are frequent and systematic assessment of symptoms in short periods, and strategies that allow for timely adjustment of therapy when necessary.

Introdução. Embora existam diferentes estratégias para a prestação de cuidados paliativos ao paciente com câncer, pouco se conhece sobre a efetividade desses modelos. Objetivos. Comparar os efeitos da equipe de cuidado paliativo integrada ao cuidado tradicional com o cuidado tradicional sozinho no controle de sintomas em paciente com câncer avançado hospitalizado. Método. Estudo longitudinal composto por dois grupos não randomizados. 73 pacientes foram admitidos para a equipe de cuidado paliativo integrada ao cuidado tradicional (Grupo ECP) e comparados a 75 atendidos no modelo de cuidado tradicional (Grupo CT). Os sintomas foram avaliados pela Escala de Avaliação de Sintomas de Edmonton (ESAS), a satisfação por escala numérica verbal (0-10), a funcionalidade pela Escala de Desempenho Funcional Físico Karnofsky (KPS) e a adequação analgésica pelo Índice de Manejo da Dor (IMD). Os pacientes foram avaliados na admissão, após 24 e 48 horas. O desfecho primário foi a melhora clinica significativa de 2 pontos na intensidade da dor e da náusea em 48 horas, comparados com a admissão. Os dados demográficos, os sintomas e sua redução foram comparados entre os Grupos pelo Teste Exato de Fisher ou Mann Whitney. O Teste de Wilcoxon analisou alterações dos sintomas intragrupos. A regressão múltipla de Poisson controlou fatores de confusão para a melhora do sintoma. O nível de significância adotado foi de 5%. Resultados. A prevalência de sintomas foi alta em ambos os grupos: no Grupo ECP a variação foi de 43.8% (depressão) a 87.7% (sensação de bem estar), e no Grupo CT, de 24% (dispneia) a 85.5% (dor). A magnitude dos sintomas, pelo escore da mediana, foi importante em ambos os Grupos: na admissão, no Grupo ECP, variou entre 5.5 (sensação de bem estar) a 8.0 (ansiedade, apetite, constipação e tristeza), e no Grupo CT, variou de 6.0 (sensação de bem estar e dispneia) a 9.0 (perda do apetite). A mediana de sobrecarga de sintomas, avaliada pelo ESAS, foi de 50.0 em ambos os grupos. Na análise de 24 horas (intragrupo), no Grupo ECP cinco sintomas (dor, náusea, perda do apetite, dispneia, prejuízo do sono) e sobrecarga de sintomas foram reduzidos (p<0.05), enquanto no Grupo Grupo CT três sintomas (dor, náusea e prejuízo do sono) foram reduzidos (p<0.05). Na análise de 48 horas (intragrupo), dez sintomas e sobrecarga de sintomas no Grupo ECP foram reduzidos (p<0.05), enquanto quatro sintomas melhoraram no Grupo CT (p<0.05). A regressão múltipla mostrou que a dor (RR= 2.2 [IC95%1.27-3.81]) e bem estar (RR=4.6 [IC95% 1.34-15.88]) reduziram 2 pontos e foi favorável somente no Grupo ECP. Verificou-se melhor adequação da analgesia no Grupo ECP comparado ao CT (p<0.05). A satisfação do doente foi elevada e similar em ambos os grupos. Conclusão. Os doentes de ambos os grupos mostraram grande sobrecarga de sintomas e somente o sintoma dor foi adequadamente controlado pelo Grupo ECP. Os resultados encontrados demandam análise de fatores da estratégia de tratamento que possam melhorar a efetividade das ações, como avaliação sistematizada dos sintomas em curtos períodos e estratégias que permitam ajuste rápido da terapêutica quando necessário. / Introduction. Although there are many different strategies for provision of palliative care to patients with cancer, little is known about the effectiveness of these modalities. Objective.To compare the effects of a palliative care team integrated with traditional care to traditional care alone on symptom control in inpatients with advanced cancer. Method. Longitudinal study composed of two non-randomized groups. Seventy-three patients were admitted to the palliative care team integrated to traditional care (PCT Group) and compared to 75 patients treated in the traditional care model (TC Group). Symptoms were assessed by the Edmonton Symptom Assessment Scale (ESAS), satisfaction with treatment by the verbal numeric scale (0-10), performance status by the Karnofsky Performance Status Scale (KPS) and analgesic adequacy by the Pain Management Index (PMI). Patients were assessed upon admission, and after 24 and 48 hours. The primary outcomes were significant clinical improvements of 2 points in pain intensity and nausea in 48 hours, compared to admission. The demographic data, symptoms, and reduction in symptoms were compared between the groups by using Fisher\'s or Mann Whitneys Exact Tests. The Wilcoxon test examined the intragroup alteration of symptoms. The Poisson multiple regression controlled for confounding factors of improvement in symptoms. A p-value of 0.05 indicated statistical significance for all analyses. Results. The prevalence of symptoms at admission was high in both groups. In the PCT Group, it ranged from 43.8% (depression) to 87.7% (loss of well-being) and, in the TC Group, it ranged from 24% (dyspnoea) to 85.5% (pain). The magnitude of median score of symptoms was substantial in both groups: at admission for the PCT group, it ranged from 5.5 (sense of well-being) to 8.0 (anxiety, appetite, constipation, sadness), while for the TC Group, it ranged from 6.0 (sense of well-being and dyspnoea) to 9.0 (loss of appetite). The median score of the symptom burden assessed by ESAS was 50.0 in both groups. In 24 hours (intragroup), the PCT Group had significant reductions in intensity of five symptoms (pain, nausea, loss of appetite, dyspnoea, and sleep disturbance) and symptom burden, while the TC Group had significant reductions in intensity of three symptoms (pain, nausea, and sleep disturbance). In 48 hours (intragroup), the PCT Group had significant reductions in intensity of ten symptoms and symptom burden and while the TC Group had significant improve in intensity of four symptoms. Multiple regression analysis showed that pain (RR = 2.2 [95% CI 1.27-3.81]) and loss of well-being (RR = 4.6 [95% CI 1.34-15.88]) were reduced by two points and it was significantly more favourable only in the PCT Group. The PMI revealed better adequacy of analgesia in the PCT Group. Satisfaction was high and similar in both groups. Conclusion. Patients with advanced cancer in both groups showed a pronounced burden of symptoms and only pain was properly controlled in the PCT Group. The results indicate that factors that can improve treatment strategy should be implemented to improve the effectiveness of clinical assistance. Examples of factors that can improve treatment are frequent and systematic assessment of symptoms in short periods, and strategies that allow for timely adjustment of therapy when necessary.

No description available.