The overall aim of this thesis is to explore experiences and self-reported outcomes from Transcatheter Aortic Valve Implantation, TAVI, among people with severe aortic stenosis. The thesis includes four studies. Study I-II are based on interviews performed the day before TAVI and Qualitative Concept Analysis was used for analysis. Study III is based on interviews at six months’ follow-up and Grounded Theory was used for analysis. Study IV is quantitative and based on questionnaires at baseline and at six months’ follow-up. Nonparametric, descriptive statistics were used for the analysis. Study I described the vulnerable situation for patients with severe aortic stenosis before TAVI. They were facing death and at the same time struggling to cope with their symptoms and to maintain independent. TAVI offered hope but also caused uncertainty about the new method. Study II focused on the patients’ decision-making process. Three patterns were identified; ambivalent, obedient, and reconciled. The ambivalent patient is unsure of the value of treatment and aware of the risks; the obedient patient is unsure of the value of one's own decision and wants to leave the decision to others; the reconciled patient has reached a point where there is no choice anymore and is always sure that the decision to undergo TAVI is right. Study III offered a deeper understanding of the TAVI trajectory. A journey of balancing between hope and life-struggle was the core category of the analysis. Before TAVI patients felt threatened, but also experienced hope. The rehabilitation phase was described as demanding and depressing or surprisingly simple. At the six months’ followup patients described being pleased to return to life, however, many were still struggling with limitations. Study IV focused on quantifying the symptom burden, function and health related quality of life before and after TAVI. The results were reflected against that of patients treated with open surgery. Self-rated function and health related quality of life increased and symptoms were reduced at follow-up, but breathlessness and fatigue were still common. Conclusively, TAVI patients are struggling with limitations, both because of their comorbidities and because of their valve disease which also poses a threat to their lives. TAVI gives an opportunity to survive, to stay independent and to increase quality of life. To feel and preserve hope is essential for patients’ wellbeing, both before and during the recovery process.

The aim of this study was to determine the relationship between HRQOL and adherence to an adolescent weight management program and identify variables predictive of increased adherence which are critical to motivating engagement in weight management. This study was a non-experimental, retrospective secondary analysis from aggregate data collected as part of the REWARD Teens program, a weight management program for overweight and obese adolescents. Data from 37 subjects were included in this study. Subject adherence to the program was the primary outcome variable. There was no significant relationship between baseline adolescent or parent-proxy sub-scale or total HRQOL scores with program adherence. A significant positive relationship for improved adherence was found only when change in BMI (p=.023), change of parent-proxy total PedsQL (p=.014), and change in child total PedsQL (p=.007) were present in the regression model. Body mass index and changes in both parent-proxy and child total HRQOL significantly affected attendance. Our findings suggest that baseline HRQOL does not affect program adherence. However, we identified a potentially novel interplay between variables predictive of program adherence. Future studies should focus on elucidating the mechanism by which these factors gained significance in the relationship with adherence when combined, perhaps as mediators or moderators, in order to identify interactions which may function as barriers or facilitators to adherence.

The study of immune status and biobehavioral measures is limited in professional nursing. The purpose of the pre-pilot study was to describe levels of cytokines prior to, during, and after dialysis, examine changes in cytokine levels from immediate pre-dialysis to immediate post-dialysis, and to compare cytokine patterns prior to and after dialysis. A within subject descriptive study was conducted as part of a larger pilot study to describe levels of cytokines prior to, during, and after dialysis, examine changes in cytokine levels from immediate pre-dialysis to immediate post-dialysis, and to compare cytokine patterns prior to and after dialysis. Serum cytokine samples were collected pre-dialysis and every 30 minutes during the dialysis treatment and immediately post-dialysis from a convenience sample of 10 patients. Mean age of subjects was 53.5 years and 60% were African American. The sample was equally divided between female and male. Statistical analysis using a nonparametric paired difference test showed that only MIP-1β showed a significant increase from pre-dialysis to post-dialysis. Based on the results of this study, a second descriptive study was conducted. The purpose of the second study was to examine the relationships among disease related factors, perceived stress, depressive symptoms, immune indicators, and HRQOL among patients requiring hemodialysis for ESRD using a PNI framework. Using a descriptive design, participants completed the Perceived Stress Scale (PSS), the Center for Epidemiologic Studies Depression Scale (CES-D), and one quality of life measure, the Functional Assessment of Cancer Therapy-General scale (FACT-G), during the first hour of the dialysis treatment. In addition, blood samples were collected immediately prior to dialysis for cytokine measurement and demographic information was collected from the medical record. The sample included 75 adults with ESRD requiring dialysis who consented and were enrolled in the study. Regression analysis showed significant correlations among the psychosocial variables (p = <0.0001, r = 0.65). Negative correlations were found between perceived stress and health-related quality of life (p = 0.024) and depressive symptoms with health-related quality of life (p = 0.0003). MIP-1 ß was the only cytokine significantly (and positively) correlated with health-related quality of life ( p = 0.0419). Principal component analysis of the cytokine data revealed three factors. A three-factor solution described the cytokine data; Factors 1 and 3 represented a pro-inflammatory response and Factor 2 represented a mixture of pro-inflammatory and anti-inflammatory responses. There was a significant correlation between Factor 1 and depressive symptoms (p = 0.0069). Significant differences in the distributions of Factors 2 and 3 were associated with the presence of cardiovascular disease (CVD) (Chi-square = 4.0, df = 1, p = 0.047), (Chi-square = 4.1, df = 1, p = 0.043), respectively, and Factor 3 with hypertension (HTN) (Chi-square = 7.6. df = 1, p = 0.006). However no relationships were found between the cytokine factors and QOL, PSS, and other variables. Findings suggest that there are relationships among psychosocial variables and possibly biological interactions that may affect perceptions of health-related quality of life among persons with ESRD on hemodialysis.

Thesis advisor: Jane Flanagan / BACKGROUND: Breast cancer survivors experience a range of needs in the post-treatment phase as they transition into survivorship and beyond. The transition to survivorship requires breast cancer survivors to actively engage in self-managing their care, but little is known about patient engagement into survivorship care and what factors may contribute to this. Information is needed to further explore patient engagement into survivorship care, what factors may contribute to it and which patients are more likely to engage in their care and thus be better equipped to self-manage during survivorship. PURPOSE: The purpose of this study was to explore how demographic/personal factors and survivorship outcomes are related to and may contribute to patient engagement in early stage breast cancer survivors. METHODS: A cross-sectional, web-based self-report national survey was conducted using measures assessing personal/demographic factors, survivorship outcomes: health-related quality of life (HRQOL), fear of cancer recurrence (FCR), cancer health literacy (CHL) and two measures of patient engagement (patient activation (PA) and knowing participation in change (KPC). There was one open-ended question regarding additional survivorship concerns, not addressed in the previous survey items. Participants were recruited using Dr. Susan Love’s Army of Women Research Foundation and Craigslist. Data were analyzed via bivariate associations and backwards linear regression modeling in SPSS. RESULTS: The final sample included 303 participants (301 females and 2 males) with a mean age of 50.70 years. The sample was predominantly White, non-Hispanic and equally dispersed across the United States. Patient engagement, as represented by PA and KPC, was significantly correlated with 13 predictor variables and there were 10 predictor variables that resulted in significant ANOVA relationships with PA and KPC. In both the KPC and PA regression models, HRQOL significantly predicted for patient engagement. In the KPC regression model, social support and level of education also significantly predicted for patient engagement and receipt of a survivorship care plan contributed unique variance to the model. The open-ended question response categories included: physical concerns, mental health concerns, financial toxicity, social support, body image concerns, other concerns or no concerns/none. CONCLUSIONS: This study provides preliminary evidence that personal/demographic factors and survivorship outcomes may contribute to patient engagement in breast cancer survivors. Using assessment tools that measure factors such as HRQOL, social support, education level and patient engagement may give providers some insight as to which survivors may be ready to engage in survivorship care and those that may need more resources and/or support. Additional studies are needed to replicate and validate these results. More research is needed aimed at maximizing patient-centered care, patient engagement and ultimately improving SC. Keywords: breast cancer survivor, survivorship, patient engagement, health-related quality of life, social support. / Thesis (PhD) — Boston College, 2019. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

Sammanfattning  Bakgrund: Njurtransplantation är en av de främsta behandlingarna vid njursvikt, som resulterar i både positiva och negativa effekter för patienten.    Syftet: Syftet med denna uppsats var att ta reda hur mottagaren upplever sin hälsorelaterade livskvalitet (HRQoL), fysiskt, psykiskt och socialt, efter en njurtransplantation. Metod: En litteraturöversikt där tio artiklar av kvantitativ karaktär valdes ut för att sedan granskas och analyseras.Databaserna som användes var PubMed, CINAHL, MEDLINE, Cochrane och PsycInfo.Katie Erikssons omvårdnadsteori användes som teoretisk referensram. Resultat: Studiens resultat delades upp i psykisk livskvalitet, fysisk livskvalitet och social livskvalitet. Flertalet patienter rapporterade om försämrad fysisk livskvalitet relaterat till de bieffekter som de immunsuppressiva läkemedlen medför. Studien indikerar dock på att patientens HRQoL påverkas av dess förväntningar innan transplantationen, då de som hade lägre förväntningar uppgav en högre skattad livskvalitet efter transplantationen. Patienter uppgav att de kände sig friare i jämförelse med dialyspatienter, främst då de inte är bundna till dialysbehandling. Den psykiska livskvaliteten upplevdes som förbättrad i jämförelse än innan operationen, då patienterna rapporterade den psykiska stressen som mindre. Många upplevde känsla av oro över både de efterföljande sjukdomarna som en njurtransplantation kan medföra, men även över transplantavstötning. De patienter som hade högre inkomst rapporterade högre social livskvalitet jämfört med de som hade det sämre ställt, efter en njurtransplantation.  Slutsats: Patienterna rapporterade ett varierande resultat av hur de upplever sin HRQoL efter njurtransplantation. Den fysiska livskvaliteten var den som var mest försämrad, i och med de biverkningar som läkemedlen medför. Generellt upplevde dock flertalet av patienterna en förbättrad HRQoL i jämförelse med innan transplantationen. För att minska patientens lidande har sjuksköterskan en mycket viktig roll. / Abstract  Background: Kidney transplantation is one of the primary treatments for renal disease, which results in both positive and negative effects for the patient.  Aim: The aim of this review was to find out how the recipient of the kidney experiences his or her health-related quality of life (HRQoL), physically, mentally and socially, after a kidney transplantation. Method: A systematic review where ten quantitative studies were elected to be reviewed and analyzed. The data bases that has been used is PubMed, CINAHL, MEDLINE, Cochrane and PsycInfo. The nursing theory of Katie Eriksson was used as a theoretical reference. Results: The result of the study was divided in physical, mental and social quality of life (QoL). Multiple patients reported that they experienced worse physical HRQoL related to the side effects of the immunosuppressant medication. Although, the study indicates that the patients HRQoL is affected by the high expectations before the transplantation, where the patients with lower expectations reported a higher score of experienced HRQoL after the kidney transplantation. Patients also stated that they felt more free in comparison with patients undergoing dialysis since they are not bound to go to any dialysis treatments. The experienced mental QoL after the operation was better than before because of less mental stress. The diseases that a kidney transplantation can lead to, along with the worry of transplant rejection was stated as a concern among a lot of the patients. The patients with a higher income reported a better experienced social QoL, after kidney transplantation, compared to the patients with lower socioeconomic status.  Conclusion: The patients reported varying results about the experienced HRQoL after a kidney transplantation. The psysical QoL was stated as the most impaired, mainly because of the side effects of the immunosuppressants. However, the majority of the patients generally experienced an improved HRQoL in comparison with their life before the transplantation. It is a big part of the nursing role to decrease the suffering of the patient.

A sepse é uma condição importante dentre as complicações infecciosas da contemporaneidade, do ponto de vista clínico e da saúde pública, tanto pelo número de casos, quanto pela gravidade e potencial de evolução para óbito. Trabalhos mostraram que a taxa de mortalidade durante a internação é elevada e que permanece alta até cinco anos após a hospitalização. Além disso, estudos apontaram perdas nos aspectos físicos e cognitivos, o que resulta em prejuízos sociais e emocionais que afetam a Qualidade de Vida Relacionada à Saúde (QVRS) desses indivíduos. A partir da abordagem de pesquisa de desenho misto com estratégia de triangulação concomitante, utilizando-se do instrumento genérico para avaliação da QVRS Medical Outcomes Study 36 - Item Short-Form Health Survey (SF-36) (Versão dois) e de entrevista semiestruturada analisada sob o marco teórico da psicanálise de orientação lacaniana, à luz da técnica de análise de conteúdo indutivo, objetivou-se analisar as interpretações que cada participante faz sobre a experiência da sepse e relacioná-la com a QVRS dessas pessoas. A população estudada foi constituída por quatro indivíduos que passaram pelo evento da sepse no período de junho de 2013 a junho de 2015. Este estudo foi elaborado de acordo com as diretrizes contidas na Resolução CNS 466/2012 para o desenvolvimento de pesquisa com seres humanos e foi aprovado pelo Comitê de Ética em Pesquisa com Seres Humanos da Escola de Enfermagem de Ribeirão Preto-USP. Foi observado, a partir da análise dos resultados do SF-36 (Versão dois), mediana e baixa QVRS dos participantes deste estudo e, a partir da análise das entrevistas, pôde-se observar como cada um, a partir da sua subjetividade, pôde experienciar o evento da sepse, notadamente em aspectos que apontavam para o corpo e o adoecimento. Esses achados possibilitam uma compreensão ampliada que pode contribuir com a prática clínica da equipe de saúde multidisciplinar / The sepsis is an important condition between the infectious complication of contemporaneity, from a clinical point of view and public health, because of the number of cases, the severity and the potential progression to death. Studies showed that the mortality rate during hospitalization is high and remains high until five years after hospitalization. Authors showed losses in physical and cognitive aspects, resulting in social and emotional losses that affect the health-related quality of life (HRQOL) of these individuals. From the mixed research design approach with concurrent triangulation strategy, using the generic instrument to assess HRQOL Medical Outcomes Study 36 - Item Short-Form Health Survey (SF-36) (Version two) and the semi-structured interviews analyzed under the theoretical framework of Lacanian psychoanalysis in the light of inductive content analysis technique, this study aimed to analyze the interpretations that each participant makes about the experience of sepsis and relate it to the HRQOL of these people. The study population consisted of four individuals who have gone through sepsis event from June 2013 to June 2015. The study was prepared in accordance with the guidelines contained in Resolution CNS 466/2012 for the development of research with human beings it was approved by the Ethics Committee on Human Research of the Ribeirão Preto College of Nursing-USP. It was observed from the analysis of the results of the SF-36 (Version two), median and low HRQOL of the study participants and from the analysis of the interviews, it was observed how each one, from their subjectivity, could experience the event of sepsis, especially in ways that pointed to the body and illness. These findings allow a broader understanding that way contribute to the clinical practice of multidisciplinary health team

Bakgrund: Psykisk ohälsa ökar bland unga. Underlag finns som säger att träning ger psykologiska hälsovinster. Evidensläget är dock bristfälligt avseende unga. Få studier har hittats som jämför hälsorelaterad livskvalitet hos flickor som utövar lag- respektive individuell sport samt som undersöker sambandet mellan mängden träning och det psykiska måendet i gruppen. Syfte: Syftet var att jämföra generell hälsorelaterad livskvalitet och det psykiska måendet mellan flickor på gymnasiet som utövade lag- respektive individuell sport, samt att undersöka sambandet mellan mängden träning och det psykiska måendet av hälsorelaterad livskvalitet. Metod: En kvantitativ, icke-experimentell, jämförande och korrelerande tvärsnittsstudie gjordes baserad på insamlad data från idrottsföreningar i Uppsala Län.  Resultat: Ingen skillnad förelåg i generell hälsorelaterad livskvalitet. De som tränade i lag hade något bättre psykiskt mående. Sambandet mellan mängden träning och psykiskt mående var mycket svagt, om något alls, i hela undersökningsgruppen.  Slutsats: Båda grupperna hade hög livskvalitet och ingen skillnad fanns mellan grupperna. Resultatet visar en antydan till att flickor som tränar i lag mår bättre vilket överensstämmer med tidigare forskning. Detta kan indikera att Fysioterapeuter i större utsträckning borde rekommendera lagsport för flickor med psykisk ohälsa. / Background: Mental illness is growing among young people. Exercise improves psychological health. The evidence is inadequate for young people. Few studies have been found comparing health related quality of life (HRQOL) and who investigates the correlation between exercise and mental health in girls who practice in team sports and individual sports.  Aim: The aim was to compare HRQOL and mental health between girls in high school who were physical active in team sports and individual sports, and to investigate the correlation between the amount of exercise and mental health of HRQOL. Method: A quantitative, non-experimental, comparative and correlating cross-sectional study was made based on data from sports clubs in Uppsala County.  Results: There was no difference in HRQOL. Those who practiced in team sports had better mental health. The correlation was very small, or zero, between the amount of exercise and the psychological subscale in the whole group.  Conclusion: Both groups had high HRQOL and there was no difference between them. The results shows a trend that girls who are physical active in team sports feel better which is consistent with previous research. This indicates that physiotherapist possibly should recommend team sports for girls with mental illness.

Atualmente, observa-se um aumento na incidência e prevalência de condições crônicas, como o diabetes mellitus (DM). Estudos mostram seu impacto negativo na Qualidade de Vida (QV) dos indivíduos, visto que as alterações no estilo de vida, impostas pela condição, podem comprometer alguns aspectos relevantes da vida tais como convívio familiar, capacidade funcional, aspectos físicos e emocionais, vitalidade, entre outros. Conhecer o impacto do DM, sobre cada um destes aspectos, possibilita planejar e implementar ações de enfermagem voltadas às estratégias de prevenção, promoção e recuperação da saúde, resultando na melhoria da QV. Objetivos: Descrever o perfil dos indivíduos com diabetes mellitus atendidos por uma equipe da Estratégia Saúde da Família (ESF) do município de Uberaba, no período de março a junho de 2007, segundo variáveis sociodemográficas e clínicas, e avaliar a Qualidade de Vida Relacionada à Saúde (QVRS) destes indivíduos. Metodologia: Estudo transversal realizado com 68 indivíduos adultos, portadores de DM, tipo 1 e 2, de ambos os sexos em acompanhamento por uma equipe da ESF, no município de Uberaba-MG, no período de março a junho de 2007. Os dados foram coletados por meio de um instrumento contendo as variáveis sociodemográficas e clínicas e de outro para avaliação de QV, denominado Medical Outcomes Study 36 - Item Short Form Health Survey (SF - 36), durante as visitas domiciliares. Resultados: Dentre os 68 entrevistados, 48 (70,6%) são do sexo feminino com igual porcentagem para indivíduos casados, 50% não exerciam atividade profissional e 25% realizavam apenas atividades referentes ao lar. A idade apresentou média de 57,1 anos e desvio-padrão de 10,9 anos. Em relação à escolaridade, 16 (23,5%) relataram não ter estudo e 23 (33,8%), de 1 a 3 anos de estudo, 54 (79,4%) possuíam outro problema de saúde, sendo que, destes, 46 (43,8%) relataram hipertensão arterial e 22 (21,0%), problemas cardiovasculares. No que se refere à glicemia, 38 (55,9%) apresentaram glicemia alterada. Em relação à consistência interna do SF-36, medida pela estatística alfa de Cronbach, as dimensões que apresentaram maiores valores para &#945; foram: Capacidade Funcional (&#945; = 0,90), Aspectos Emocionais, Aspectos Físicos e Dor (&#945; = 0,89) e Saúde Mental (&#945; = 0,77). Em três dimensões esta foi inferior a 0,70: Estado Geral de Saúde (&#945; = 0,66), Vitalidade (&#945; = 0,62) e Aspectos Sociais (&#945; = 0,42). Em relação à avaliação da QVRS dos indivíduos com DM, as dimensões que apresentaram maiores escores médios foram: Aspectos Sociais (63,8), Dor (53,0) e Estado Geral de Saúde (51,1). Já as que obtiveram menores escores médios foram: Saúde Mental (49,9), Vitalidade (48,6), Capacidade Funcional (48,2), Aspectos Emocionais (46,6) e Aspectos Físicos (38,6). Discussão: Os resultados obtidos neste estudo mostraram um impacto negativo do DM, na QVRS dos indivíduos que participaram das entrevistas, perceptível pelos escores médios obtidos em cada dimensão do SF-36. Ressalta-se a importância das ações de promoção da saúde voltadas a este grupo de indivíduos, de forma a capacitá-lo a escolhas saudáveis em seu cotidiano, com vistas à melhoria das condições de saúde. Além da necessidade de repensar as ações de saúde, direcionadas aos indivíduos com DM, há a necessidade do levantamento das reais necessidades de saúde de tal grupo. / Nowadays, it can be observed an increase of incidence and prevalence of chronic conditions, as diabetes mellitus (DM). Studies show its negative impact on the Quality of Life (QV) of individuals, whereas the alterations in lifestyle imposed by its condition can compromise some relevant aspects of life such as: family life, functional capacity, physical and emotional aspects, vitality, among others. Knowing the impact of diabetes melltius on each of these aspects makes it possible to plan and implement nursing actions towards the prevention strategies, promotion and recovery of health, leading to improved quality of life (QV). OBJECTIVES: To describe the profile of individuals with diabetes mellitus seen by a Strategy Family Health (ESF) of Uberaba city, from March to June of 2007, according to social-demographic and clinic variables and to evaluate the Quality of Life Related to Health (QVRS) related to these individuals. METHODOLOGY: Cross-sectional study done with 68 adult individuals, having DM, type 1 and 2, both sexes, followed up by a team of ESF in Uberaba city-MG, from March to June of 2007. The data were collected through an instrument containing the socialdemographic and clinic variables and through another one for QV evaluation, called Medical Outcomes Study 36 - Item Short Form Health Survey (SF-36), during home visits. RESULTS: Of the 68 interviewed, 48 (70.6%) are feminine sex with same percentage for married individuals, 50% did not have any professional activity and 25% only performed household chores. The age showed average of 57.1 years old and standard deviation of 10.9 years. Regarding education, 16 (23.5%) reported not having education and 23 (33.8%) of 1 to 3 years of education, 54 (79.4%) had another health problem, 46 of which (43.8%) reported hypertension and 22 (21.0%) cardiovascular problems. Regarding to glycemy, 38 (55.9%) showed altered glycemy. Regarding to SF-36 internal consistency, measured by Cronbach statistic, the measurements that showed higher values to &#945; were: Functional Capacity (&#945;=0.90), Emotional Aspects, Physical Aspects and Pain (&#945;=0.89) and Mental Health (&#945;=0.77). In three measurements, this was inferior to 0.70: General State of Health (&#945;=0.66), Vitality (&#945;=0.62) and Social Aspects (&#945;=0.42). Regarding to QVRS evaluation of individuals with DM, the measurements that showed higher average scores were: Social Aspects (63.8), Pain (53.0) and General State of Health (51.1). On the other hand, those who showed lower average scores were: Mental Health (49.9), Vitality (48.6), Functional Capacity (48.2), Emotional Aspects (46.6) and Physical Aspects (38.6). DISCUSSION: The results obtained in this study showed a negative impact of DM on QVRS of patients who participated in the interviews, which can be seen through average scores obtained from each SF-36 measurement. It is highlighted the importance of health promotion actions towards this group of patients in order to enable them to make healthy choices in every day life, leading to improved health conditions. Besides the necessity of reconsidering the health actions towards individuals with DM, there is the necessity of setting up the real health necessities of such group.

A dor e o linfedema são as principais sequelas que acometem as pacientes com câncer de mama após o tratamento dessa doença, e essas sequelas acarretam alterações físicas e psicológicas que podem modificar a qualidade de vida relacionada à saúde (QVRS) dessas pacientes. Este estudo teve como objetivo verificar a presença da dor, do linfedema e da QVRS nas pacientes com câncer de mama. Foram realizadas avaliações da presença da dor com a EVA, da presença do linfedema com a perimetria e da QVRS com o EORTC QLQ C30. A amostra constituiu-se de 181 pacientes com câncer de mama que faziam acompanhamento médico da doença no Ambulatório de Mastologia do HCFMRP-USP e no Ambulatório de Fisioterapia da Fundação Pio XII - Hospital do Câncer de Barretos. A média da idade das pacientes variou de 52,81 (±11,68) a 54,09 (±11,39); a maioria das pacientes era casada, com baixo nível de escolaridade e desempenhavam atividade doméstica. A mama esquerda foi a mais acometida, o carcinoma ductal infiltrante foi o predominante e a mastectomia foi a técnica cirúrgica mais utilizada nas pacientes deste estudo. Constatou-se que 78 pacientes referiram sentir dor no membro superior homolateral à intervenção cirúrgica, em 52 pacientes constatou a presença do linfedema. A QVRS foi considerada como boa pelas pacientes. / The pain and lymphedema are the major consequences that affect patients with breast cancer after treatment of this disease, and these consequences cause physical and psychological changes that may alter the quality of life related to health of these patients (HRQOL). This study aimed to verify the presence of pain, lymphedema and HRQOL in patients with breast cancer. The presence of pain evaluated using visual anologue scale (VAS), perimetry was used to evaluate presence of lymphedema and HRQOL was measure with EORTC QLQ C30. The sample consisted of 181 patients with breast cancer who were monitoring the disease at the Mastology Outpatient of the Hospital das Clínicas of the University of São Paulo at Ribeirão Preto Medical School (HCRPFMRP/USP) and the Physiotherapy Outpatient of the Pius XII Foundation - Cancer Hospital of Barretos. The mean age of the patients ranged from 52,81 (±11,68) to 54,09 (±11,39). Most patients were married, with a low educational level and housewifes. The left breast was the most affected, the infiltrating ductal carcinoma was the most prevalent and mastectomy surgical technique was used in most patients in this study. 78 patients reported pain in the homolateral upper limb subsequent to surgery, in 52 patients had lymphedema. HRQOL was considered good for patients.

Fundamentação e Objetivo: A epilepsia é a doença neurológica mais comum em crianças. A avaliação da qualidade de vida destas crianças é importante para otimizar o tratamento delas. É importante para obter os pontos de vista das próprias crianças e seus pais. No entanto, existem poucos instrumentos que avaliem a qualidade de vida através da visão das crianças e dos seus pais. O objetivo deste estudo foi desenvolver e validar uma nova ferramenta para avaliação da qualidade de vida em crianças com epilepsia através de seus pais e dos pacientes. Material e Métodos: Baseada no trabalho anterior de Arunkumar e colaboradores, foi elaborada uma escala de múltipla escolha com 20 questões independentes para as crianças e seus pais: A Quality-of-Life in Pediatric Epilepsy Scale (QLPES). A análise fatorial com rotação VARIMAX foi usada para identificar possíveis áreas para as 20 questões propostas e alfa de Cronbach foi utilizado para testar a consistência das escalas. As respostas dadas pelos pacientes e seus pais ou cuidadores foram correlacionadas com frequência e gravidade das crises e com outras variáveis relacionadas com a epilepsia. Resultados: No total, 171 pacientes e seus pais participaram deste estudo. Setenta e quatro pacientes (43,3%) eram do sexo feminino, com médias de 13,3 (DP = 3,0) anos de idade e de 5,1 (DP = 3,1) anos de escolaridade. O alfa de Cronbach para cada domínio isolado sugerido pela analise fatorial foi abaixo de 0,7 para cada grupo. Entretanto, o alfa de Cronbach para todas as perguntas na escala dos pais foi de 0,83, e de 0,74 para as crianças. Para os pais ou cuidadores, as pontuações do QLPES foram menores para as mães/cuidadoras, para as crianças que usavam dois ou mais medicamentos antiepilépticos, para crianças com mais tempo de epilepsia, com maior duração de crises, ou aquelas com maior número de crises. Para as crianças, a pontuação QLPES foi menor para pacientes do sexo feminino, para as crianças que usavam dois ou mais medicamentos antiepilépticos, para aquelas com maior frequência de crises, e para crianças com EEG normal. Conclusão: A QLPES apresenta validade interna, consistência interna, confiabilidade teste-reteste e boa sensibilidade. A QLPES é um instrumento útil, preciso, rápido e fácil de usar, que reflete adequadamente a forma como a epilepsia afeta a qualidade de vida de crianças/adolescentes, assim como ele reflete como a epilepsia pediátrica afeta a qualidade de vida dos pacientes na perspectiva de seus pais ou cuidadores. / Background and Purpose: Epilepsy is the most common neurological condition in children. The evaluation of the quality of life of these children is important to optimize the treatment of them. It is important to obtain the views of the children themselves and of their parents. However, there are few scales assessing quality of life through both. The purpose of this study was to develop and validate a new parent- and patient- tool for evaluating health-related quality-of-life in pediatric epilepsy. Design and Methods: Based on previous work of Arunkumar and colleagues, we created a multiple choice scale with 20 independent questions for children and their parents. The Quality-of-Life in Pediatric Epilepsy Scale (QLPES). Factor analysis with VARIMAX rotation was used to identify possible areas for the 20 proposed questions, and Cronbach's alpha was used to test the scale’s consistency. The answers given by patients and their parents or caregivers were correlated with frequency and severity of the seizures and with other epilepsy-related variables. Results: A total of 171 patients and their parents participated in this study. Seventy four (43.3%) patients were female, with mean of 13.3 (SD=3.0) years of age and 5.1 (SD=3.1) years of schooling. The Cronbach's alpha of isolated domains suggested by the factor analysis were less than 0.7 for each group. However, alpha Cronbach for all the questions in the parents’ scale was 0.83 and 0.74 for children. For parents or caregivers, QLPES scores were lower for females responders, for children using two or more antiepileptic drugs, for children with longer time of epilepsy, longer seizure duration, or those with higher number of seizures. For children, QLPES scores were lower for female patients, for children using two or more antiepileptic drugs, for those with higher frequency of seizures, and for children with normal EEG. Conclusion: QLPES exhibits internal validity, internal consistency, test–retest reliability, and good sensitivity. QLPES is a useful, accurate, brief and easy to use instrument that adequately reflects the way epilepsy affects the quality of life of children/adolescents, as well as it reflects how pediatric epilepsy affects quality of life in the perspective of their parents or caregivers.