A carcinomatose peritoneal (CP), secundária ao avanço neoplásico maligno na cavidade abdominal, causa grande morbidade e tem como recomendação terapêutica atual um tratamento multimodal, que consiste na combinação de cirurgia citorredutora (CCR) agressiva e quimioterapia hipertérmica intraperitoneal (HIPEC). O objetivo do presente estudo é caracterizar a função respiratória desse grupo de pacientes, potencialmente candidatos à abordagem de tratamento multimodal e a relação da função respiratória com a capacidade de exercício e qualidade de vida relacionada à saúde (QVRS). Nesse estudo transversal, 25 pacientes com CP candidatos à abordagem de tratamento multimodal, foram avaliados em um centro terciário de saúde, entre maio de 2013 e abril de 2014. Foram avaliados o performance status (PS), espirometria, pressões respiratórias máximas, capacidade de exercício pelo teste de caminhada de seis minutos (TC6m) e um questionário de QVRS (QQVRS) específico para portadores de câncer. Os valores médios da avaliação de força muscular respiratória e da espirometria estavam dentro dos limites de normalidade. Todavia, foram encontrados valores reduzidos na pressão inspiratória máxima (PImax), na pressão expiratória máxima (PEmax) e na distância percorrida no TC6m em 6/25 (24%), 4/25 (16%), e 9/20 (45%), respectivamente. A PImax se associou com o PS, enquanto que a PEmax se associou com a capacidade de exercício, escala funcional do QQVRS e PS. Em conclusão, uma significativa proporção de pacientes apresentava fraqueza muscular respiratória e redução da capacidade de exercício. A força muscular respiratória mostrou associação significativa com PS, enquanto que a PEmax se relacionou com a capacidade de exercício e escala funcional do questionário de QVRS. / Peritoneal carcinomatosis (PC), secondary to advanced abdominal malignancies, causes great morbidity and is currently treated using multimodal approaches combining aggressive cytoreductive surgery (CRS) and intraperitoneal hyperthermic chemotherapy (HIPEC). The aim of the present study is to characterize the respiratory functional status of patients with PC potentially candidates to multimodal treatment approaches and the relationship of respiratory function with exercise capacity and health related quality of life (HRQL). In a cross-sectional study, 25 patients with PC referred for CRS plus HIPEC treatment approach at a tertiary care center between May 2013 and April 2014 were evaluated. Performance status, spirometry, maximal respiratory pressure measures,6-minute walk test (6MWT) and cancer specific HRQL questionnaire were assessed. Mean values of spirometry and respiratory muscle strength were above normal limits. However, reduced maximal inspiratory pressure (MIP), maximal expiratory pressure (MEP) and 6MWT distance was found in 6/25 (24%), 4/25 (16%), and 9/20 (45%), respectively. MIP was associated with performance status while MEP was associated with exercise capacity, functional scale of HRQL questionnaire and performance status. A significant proportion of patients presented respiratory muscle weakness and impaired exercise capacity. MEP and MIP were related with performance status while MEP was additionally associated with exercise capacity and functional scale of HRQL.

Introdução: Doença Renal Crônica (DRC) consiste, principalmente, na redução da capacidade dos rins em filtrar substâncias tóxicas, acarretando alterações metabólicas e hormonais. Em fases terminais, a terapia renal substitutiva (TRS) torna-se necessária, e o transplante renal tem sido relatado como a melhor opção terapêutica e de reabilitação para pacientes com DRC. Entretanto a DRC e o transplante renal podem afetar a qualidade de vida relacionada à saúde (QVRS) desses pacientes, podendo ser influenciada por aspectos da saúde física e mental, tais como os sintomas depressivos (SDs). Objetivos: Caracterizar os pacientes com DRC, após transplante renal, em um município do estado de São Paulo quanto aos aspectos sociodemográficos, econômicos e clínicos; descrever a QVRS e os SDs; correlacionar a QVRS e os fatores sociodemográficos, econômicos e clínicos; comparar a QVRS, segundo as dimensões do SF-36, entre os pacientes sem e com SDs e correlacionar a QVRS com os SDs. Material e Método: Trata-se de um estudo transversal, de natureza quantitativa, que incluiu pacientes que realizaram transplante renal entre 6 e 24 meses retroativos da data de início da coleta de dados, maiores de 18 anos e faziam acompanhamento no ambulatório de Transplante Renal do HCFMRP-USP, na cidade de Ribeirão Preto-SP. Foram excluídos os pacientes que apresentavam instabilidade clínica, o que totalizou a inclusão de 60 pacientes no estudo. Os instrumentos utilizados foram: instrumento para caracterização dos participantes, o qual foi adequado ao estudo e submetido à avaliação de conteúdo, Medical OutcomesStudy (MOS SF-36) para avaliação da QVRS e o Inventário de Depressão de Beck (IDB) para avaliar os SDs. Os dados foram obtidos por meio de entrevista individual com o paciente e de consulta ao prontuário. A coleta de dados ocorreu de abril a agosto de 2011. O projeto foi aprovado pelo Comitê de Ética em Pesquisa da Escola de Enfermagem de Ribeirão Preto - Universidade de São Paulo. A análise dos dados constou da análise estatística descritiva; coeficiente de correlação de Pearson (r) para verificar a correlação entre os domínios do SF-36 com o escore total do IBD; análise de variância (ANOVA) para comparar os domínios do SF-36, nos grupos com ausência e com presença de SD; Teste Exato de Fisher para verificar a associação entre as variáveis qualitativas relacionadas ao escore de IDB e às diversas variáveis independentes, além disso, a quantificação da associação foi mensurada por meio de modelos de regressão logística na qual calculamos o OddsRatio Bruto com seus respectivos intervalos de confiança de 95%. Todas as análises estatísticas foram realizadas com a utilização do software estatístico SAS® 9.0. Valores de p menores que 0,05 foram considerados significativos. Resultados: Dos 60 pacientes, 51 eram adultos e 9 idosos; 41 eram homens e 19 eram mulheres. Os domínios do SF-36 que obtiveram menores escores médios foram: aspectos físicos (59,58), capacidade funcional (64,67) e vitalidade (71,42), e os que obtiveram maiores escores médios foram: aspectos sociais (79,79), dor (78,12) e aspectos emocionais (75,56). Quanto aos escores do IDB, 43 pacientes apresentaram ausência de SDs, 12 apresentaram disforia e 5 apresentaram SDs classificados entre leves e moderados. Não possuir trabalho aumentou a chance em 7,7 vezes de ter SDs que ter trabalho. Os pacientes com ausência de SDs apresentaram escores médios mais elevados nos domínios do SF-36, refletindo melhor QVRS, quando comparados aos pacientes com algum grau de SDs, com notória diferença na comparação (p<0,05). Encontramos correlações negativas entre os domínios do SF-36 e os escores do IDB, ou seja, à medida que aumentaram os escores de SDs, decresceram os escores médios nos domínios de QVRS. Tais correlações apresentaram p valor <0,05, exceto para o domínio estado geral de saúde. Conclusão: A presença de SDs se relacionou negativamente com a QVRS dos pacientes transplantados renais, evidenciando a necessidade de incluir a avaliação dos sintomas depressivos e respectivos atendimentos das alterações quando identificadas, na prática clínica que engloba a atuação do enfermeiro, para otimizar a QVRS desses pacientes. / Introduction: Chronic Kidney Disease (CKD) mainly involves the decrease in the kidney\'s ability to filter toxic substances, causing metabolic and hormonal alterations. In terminal stages, renal replacement therapy (RRT) becomes necessary, and kidney transplantation has been reported as the best treatment and rehabilitation option for CKD patients. CKD and the kidney transplantation can affect these patients\' healthrelated quality of life (HRQoL) though, which can be influenced by physical and mental health aspects, including depressive symptoms (DS). Aims: Characterize CKD patients after kidney transplantation in a city in São Paulo State regarding socio-demographic, economic and clinical aspects; describe HRQoL and DS; correlate HRQoL with the socio-demographic, economic and clinical factors; compare HRQoL, according to the SF-36 dimensions, between patients with and without DS and correlate HRQoL with the DS. Material and Method: This quantitative and crosssectional study included patients who underwent a kidney transplantation between 6 and 24 months before the start of data collection, over 18 years of age and monitored at the Kidney Transplantation outpatient clinic of HCFMRP-USP in RibeirãoPreto-SP, Brazil. Clinically unstable patients were excluded, totaling 60 patients included in the study. The following instruments were used: patient characterization instrument, which was adapted to the study and submitted to content assessment, Medical Outcomes Study (MOS SF-36) for HRQoL assessment and Beck\'s Depression Inventory (BDI) for the assessment of DS. Data were collected through an individual interview with the patient and consultation of patient files. Data collection took place between April and August 2011. Approval for the project was obtained from the Institutional Review Board at the University of São Paulo at RibeirãoPreto College of Nursing. Data analysis comprised descriptive statistical analysis; Pearson\'s correlation coefficient (r) to check the correlation between the SF-36 domains and the total BDI score; variance analysis (ANOVA) to compare the SF-36 domains in the groups with and without DS; Fisher\'s Exact Test to verify the association between the qualitative variables related to the BDI score and the different independent variables. In addition, the association was quantified through logistic regression models, in which the Gross Odds Ratio was calculated with its respective 95% confidence intervals. SAS® 9.0 statistical software was used for all statistical analyses. P-values inferior to 0.05 were considered significant. Results: 51 out of 60 patients were adults and 9 elderly; 41 were men and 19 women. The SF-36 domains with the lowest mean scores were: physical aspects (59.58), functional capacity (64.67) and vitality (71.42); while the domains with the highest mean scores were: social aspects (79.79), pain (78.12) and emotional aspects (75.56). As for the BDI scores, 43 patients presented absence of DS, 12 dysphoria and 5 DS classified between mild and moderate. Not having a job increased the chance of DS by 7.7 times. Patients without DS obtained higher mean scores on the SF-36 domains, reflecting a better HRQoL in comparison with patients with some degree of DS, with a statistically significant difference (p<0.05). We found negative correlations between the SF-36 domains and the BDI scores, that is, to the extent that DS scores increased, the mean scores on the HRQoL domains dropped. The p-value for these correlations was <0.05, except for the general health status domain. Conclusion: The presence of DS was negatively related with the HRQoL of kidney transplant patients, evidencing the need to include the assessment of depressive symptoms and attend to the alterations when identified in clinical practice, which includes nursing actions, in order to improve these patients\' HRQoL.

Submitted by Renata Lopes (renatasil82@gmail.com) on 2018-03-28T10:55:06Z No. of bitstreams: 1 claudiovitorinopereira.pdf: 2007221 bytes, checksum: 6a75d12eda07ab1053308c2fda7735f6 (MD5) / Approved for entry into archive by Adriana Oliveira (adriana.oliveira@ufjf.edu.br) on 2018-04-09T19:23:06Z (GMT) No. of bitstreams: 1 claudiovitorinopereira.pdf: 2007221 bytes, checksum: 6a75d12eda07ab1053308c2fda7735f6 (MD5) / Made available in DSpace on 2018-04-09T19:23:06Z (GMT). No. of bitstreams: 1 claudiovitorinopereira.pdf: 2007221 bytes, checksum: 6a75d12eda07ab1053308c2fda7735f6 (MD5) Previous issue date: 2018-01-19 / CAPES - Coordenação de Aperfeiçoamento de Pessoal de Nível Superior / A doença renal crônica (DRC) apresenta-se como um problema de saúde pública em decorrência de sua prevalência e dos custos envolvidos no tratamento, bem como da alta taxa de morbimortalidade. Em sua fase mais avançada, ela necessita de uma terapia renal substitutiva. Estima-se que 111.303 pessoas se encontrem em tratamento dialítico por ano, destas, aproximadamente, 92,8% são submetidas à hemodiálise. O regime terapêutico hemodialítico engloba alterações no cotidiano, tais como o deslocamento aos centros de diálise e restrições alimentares e no convívio familiar. O presente estudo teve como objetivo avaliar a adesão ao regime terapêutico e qualidade de vida relacionada à saúde (QVRS) de pacientes renais crônicos em hemodiálise. Os padrões para a avaliação da adesão ao regime terapêutico foram estabelecidos pelo estudo The Dialysis Outcomes and Practice Patterns Study (DOPPS), são eles: restrição hídrica, restrição dietética, regime medicamentoso e terapia hemodialítica. Pacientes que apresentaram não conformidade em pelo menos um dos aspectos do tratamento foram considerados não aderentes à terapêutica. A análise dos dados foi realizada através dos testes Quiquadrado, Fischer, teste t, ANOVA e análise de regressão logística. A avaliação da QVRS foi realizada através do questionário Kidney Disease Quality of Life Short Form - KDQOL-SF. Foram analisados os componentes específicos da doença renal crônica (DRC) e componentes sumarizados físico (CSF) e mental (CSM). Utilizou-se para análise das variáveis os testes de Mann Whitney e Kruskal Wallis. Os resultados do presente estudo apontam que pacientes idosos, com diurese residual, parâmetro nutricional e hematológico adequados, com financiamento público das sessões de hemodiálise e cor da pele branca apresentaram maior probabilidade de serem aderentes (p<0,05). Indivíduos do sexo feminino, com menos de 60 anos, brancos, com baixo nível socioeconômico, que necessitam de acompanhante, em terapia hemodialítica por período menor que 5 anos e que possuem prescrição medicamentosa com 10 ou mais fármacos, com baixos níveis séricos de albumina e hemoglobina e não adesão à restrição hídrica e à terapia apresentaram piora na QVRS. Torna-se primordial que o plano terapêutico contemple a necessidade individual do paciente. A monitoração desses parâmetros, bem como busca para alcance dos padrões recomendáveis podem trazer melhorias em diversos aspectos da vida dos pacientes e subsidiar a prática clínica e o planejamento assistencial. Com isso, objetiva-se reduzir o percentual de hospitalização, gastos com saúde, mortalidade e fornecer melhorias nas condições de vida dos pacientes. / Chronic kidney disease (CKD) is a public health problem due to its prevalence and the costs involved in treatment, as well as the high morbidity and mortality rates. At its most advanced stage, it requires renal replacement therapy. It is estimated that 111,303 people are undergoing dialysis treatment per year, of which approximately 92.8% are undergoing hemodialysis. The hemodialysis treatment regime encompasses changes in daily life, such as travel to dialysis centers and restrictions on diet and family life. The present study aimed to evaluate adherence to the treatment regimen and health-related quality of life (HRQoL) of chronic renal patients on hemodialysis. The standards for assessing adherence to the treatment regimen were established by The Dialysis Outcomes and Practice Patterns Study (DOPPS), being: fluid restrictions, dietary restrictions, medication regimen, and hemodialysis therapy. Patients who showed noncompliance in at least one aspect of treatment were considered nonadherent to therapy. Data analysis was performed using the Chi-square test, Fischer's test, t-test, ANOVA, and logistic regression analysis. The HRQoL assessment was done using the Kidney Disease Quality of Life - Short Form - KDQOL-SF questionnaire. The specific components of chronic kidney disease (CKD), and the physical component summary (PCS) and mental component summary (MCS) were analyzed. The Mann Whitney and Kruskal Wallis tests were used for analysis of the variables. The results of the study indicate that elderly patients with residual diuresis, adequate nutritional and hematological parameters, with public funding for hemodialysis sessions, and with white skin color, were more likely to be adherent (p <0.05). Individuals who are female, under 60 years old, white, of lower socioeconomic status, who require a companion, in hemodialysis therapy for less than 5 years, and who are prescribed 10 or more drugs, with low serum levels of albumin and hemoglobin, and nonadherent to fluid restrictions and to therapy, presented a worsening HRQoL. It is therefore essential that the treatment plan addresses the individual needs of the patient. Monitoring these parameters, as well as striving to attain the recommended standards, can bring about improvements in various aspects of patients' lives, and aid clinical practice and care planning. With this, the aim is to reduce hospitalization rates, health expenses, mortality, and provide improvements in the living conditions of these patients.

Bakgrund diabetes är en allvarlig och vanligt förekommande sjukdom. Av personer som drabbas av diabetes beräknas 15 procent någon gång i livet drabbas av komplikationen diabetesfotsår som ökar risken för infektioner och amputation. Hälsorelaterad livskvalitet är ett begrepp som i kvantitativ forskning mäts med olika mätinstrument uppbyggda av domäner som belyser psykisk, fysisk, och social hälsa. För att ha god hälsa behöver personer känna en känsla av sammanhang. Syftet: Att beskriva vilka domäner av hälsorelaterad livskvalitet som är betydelsefulla för personer med diabetesfotsår. Metod: en litteraturöversikt utfördes baserad på 13 kvantitativa artiklar som mätte hälsorelaterad livskvalitet med generiska mätinstrument hos personer med diabetesfotsår. Litteratursökningar utfördes i CINAHL, PubMed och Web of Science. Resultatet: visade att domänen av hälsorelaterad livskvalitet där personer med diabetesfotsår hade lägst resultat var fysisk rollfunktion. Högst hälsorelaterad livskvalitet återfanns i domänen mental hälsa. Konklusionen är att diabetesfotsår inverkar negativt främst på den domän av hälsorelaterad livskvalitet som belyser fysisk rollfunktion i vardagligt liv för personer med diabetesfotsår. Studien visar i vilka domäner omvårdnaden behöver utvecklas och var resursdiagnoser kan återfinnas hos personer med diabetesfotsår. / Background diabetes is a global and serious disease which is likely to become eaven more common in the future. Out of all people suffering from diabetes about 15 percent is at risk of developing diabetic foot ulcer in their lifetime. In quantitavie research health related quality of life is measured with tools containing domains of psychological, physical and social health. People need a sense of coherence to be able to percieve good health. Aim: was to describe which domains of health related quality of life have the greatest role for people with diabetic foot ulcer. Method a litterature review was conducted based on 13 quantitative research articles were health related quality of life was measured with generic tools in people with diabetic foot ulcer. Reserach was found on CINAHL, PubMed and Web of Science. Results people with diabetic foot ulcer have the least health related quality of life in the domain physical role. Mental health was shown to be the domain where most health related quality of life was found in people with diabetic foot ulcer. Conclusion was that diabetic foot ulcer have a great impact in the domain physical role. Devolepment in nursing needs to focus on this aspect of life. In the same way resource diagnoses can be found in regard of the mental health more often than in any other domain of health related quality of life.

Bakgrund : Hjärtsvikt anses idag vara en folksjukdom som årligen kostar många människor livet. Ungefär 50 procent av de drabbade beräknas avlida inom fem år efter insjuknandet. Att leva med hjärtsvikt medför inte enbart flera besvärande fysiska symtom för den drabbade utan innebär även omfattande livsstilsförändringar. Syfte : Att beskriva faktorer som påverkar upplevelsen av livskvaliteten hos personer med hjärtsvikt. Metod : Examensarbetet har utformats som en litteraturöversikt där 16 artiklar analyserats. Resultat : Nedsatt psykiskt mående påvisades ha större inverkan på livskvaliteten än nedsatt fysisk funktion. En tydlig korrelation mellan psykiskt mående och livskvalitet återfanns samt det faktum att livskvalitet och god hälsa vägde tyngre än lång livstid. Att ha en nära relation till familj och anhöriga vägde också tungt då det uppfattades betryggande. Informationens betydelse visade sig dock ha mindre inverkan än väntat. Konklusion : Hjärtsvikt leder till såväl nedsatt fysisk som psykisk funktion och inkräktar även på personernas sociala välbefinnande, vilket innebär att sjukdomen även i stor grad påverkar deras livskvalitet. Litteraturöversikten visar att tidig adressering av nedsatt psykiskt mående är av stor vikt för att kunna öka personers välmående och livskvalitet. / Background : Heart failure is viewed as a public health issue which costs many people their life every year. Of those who are affected, approximately a 50 percent mortality is estimated. Living with heart failure imply suffering from inconvenient physical symptoms, but also having to extensively adapt ones lifestyle. Aim : To examine different factors that affects the perception of quality of life in people with heart failure. Method : A literature review has been done where 16 scientific articles were included. Results : Reduced mental health showed a greater influence on the percepted quality of life than reduced physical ability. An explicit correlation between mental health and quality of life was found, as well as the fact that quality of life being more important than a long lifetime. Having a close relationship with family and relatives was of great importance to feel comfort. However, the meaning of receiving information was shown to have less influence than expected. Conclusion : Heart failure leads to reduced physical-, as well as mental function and intrudes on the persons social wellbeing, which therefore also comes to affect their quality of life. This review presents the importance of an early addressing of persons with reduced mental health to enhance their well-being and quality of life.

Abstract Reduced physical function and persistent pain are serious consequences of rheumatoid arthritis (RA). Clinical trials have shown that patients with RA suffer from a poor health-related quality of life (HR-QoL). However, limited information is available on the HR-QoL of patients treated in normal clinical practice. The purpose of the present study was to obtain information of how RA can influence on the patients´ HR-QoL and functional ability in a clinical setting and to investigate the impact of disease-related and demographic factors on the HR-QoL. The theoretical framework of the study was the biopsychosocial concept of health, i.e. the ICF model (International Classification of Functioning, Disability and Health) endorsed by WHO. HR-QoL was measured by the Nottingham Health Profile (NHP) questionnaire and functional ability by the Health Assessment Questionnaire (HAQ). The contents of these instruments and the NHP results were evaluated also within the ICF categories. The study consisted of a cross-sectional series and a longitudinal cohort carried out in two central hospitals in Finland in the late 1990s. The cross-sectional group of 122 consecutive out-patients had a mean disease duration of 11 years. The HR-QoL values of the patients were compared with those of an age and gender matched ”healthy” control group living in the same area. The HR-QoL values of the patients were examined also at different functional ability levels. The longitudinal group of 62 consecutive patients had symptom duration ≤ 24 months and no prior use of antirheumatic drugs or glucocorticosteroids at inclusion. First, the impact of the treatment response assessed by the EULAR (DAS28) criteria on HR-QoL was examined at six months from disease onset. Secondly, the HR-QoL changes and their associations with age and gender and with the changes in disease activity, radiographic assessments of hands and feet and functional ability were examined for ten years after the onset of RA. RA patients had poorer scores than the controls in the NHP in the dimensions measuring mobility, pain and energy. These dimensions, along with sleep, displayed also a significant linear association with poorer HAQ levels (p&#160;&#60;&#160;0.001). A better treatment response during the first six months was linearly associated with better HR-QoL with respect to the pain, energy and mobility dimensions (p&#160;&#60;&#160;0.001). Those patients exhibiting no response to treatment had already at baseline the poorest HR-QoL in the dimension for pain and emotional reaction compared with those in the moderate and good responders. During the ten years´ follow-up, all NHP dimensions except social isolation displayed significant improvements, these being most marked during the first six months. Changes in disease activity correlated with changes in pain, energy and emotional reaction (p&#160;&#60;&#160;0.001). The mean level of the HAQ was well preserved over the ten years of this study and its changes were correlated with changes in pain, mobility and energy (p&#160;&#60;&#160;0.001). Women had somewhat poorer NHP improvements in the dimensions assessing energy, emotional reaction and social isolation than males. Disease duration associated strongly with poorer mobility and pain dimensions (p&#160;&#60;&#160;0.01). Within the ICF framework, pain, mobility, energy and sleep were identified as being the most important categories from the patient's perspective. The results of the present study demonstrate that RA has a major influence on the patients´ HR-QoL but early and active treatment can improve the situation. In the ICF framework, the NHP covers a broader spectrum of the ICF categories than can be assessed by the HAQ. / Tiivistelmä Alentunut fyysinen toimintakyky ja jatkuva kipu ovat nivelreumaan liittyviä vakavia seurannaisvaikutuksia. Kliiniset tutkimukset ovat osoittaneet, että nivelreumaa sairastavat potilaat kärsivät huonontuneesta terveyteen liittyvästä elämänlaadusta. Normaalista kliinisestä käytännöstä saatava tieto potilaiden terveyteen liittyvästä elämänlaadusta on kuitenkin niukkaa. Tämän tutkimuksen tarkoituksena oli saada tietoa nivelreuman vaikutuksista potilaiden terveyteen liittyvään elämänlaatuun ja toimintakykyyn kliinisessä asetelmassa ja tutkia sekä tautiin liittyvien että demografisten tekijöiden vaikutusta terveyteen liittyvään elämänlaatuun. Tutkimuksen teoreettisena viitekehyksenä käytettiin WHO:n hyväksymää toimintakyvyn, toimintarajoitteiden ja terveyden kansainvälistä luokitusta (ICF-malli). Terveyteen liittyvää elämänlaatua arvioitiin mittarilla Nottingham Health Profile (NHP) ja toimintakykyä mittarilla Health Assessment Questionnaire (HAQ). Kyseisten mittareiden sisältö samoin kuin NHP- tuloksia arvioitiin käyttämällä myös ICF- luokitusta. Tutkimus käsitti poikkileikkaus- ja pitkittäistutkimuksen, jotka toteutettiin 1990-luvun lopulla kahdessa suomalaisessa keskussairaalassa. Poikkileikkaustutkimukseen osallistui 122 perättäistä polikliinistä potilasta, joilla taudin kesto oli ollut keskimäärin 11 vuotta. Potilaiden terveyteen liittyvää elämänlaatua verrattiin samalla seudulla elävään iän ja sukupuolen suhteen kaltaistettuun verrokkiryhmään. Potilaiden terveyteen liittyvää elämänlaatua arvioitiin myös eri toimintakykytasoilla. Pitkittäistutkimus käsitti 62 perättäistä potilasta, joilla oireet olivat kestäneet ≤&#160;24 kuukautta ja jotka tutkimuksen alkaessa eivät olleet käyttäneet edeltävästi antireumaatteja tai kortikosteroideja. Näillä potilailla hoitovasteen vaikutusta terveyteen liittyvään elämänlaatuun arvioitiin EULAR DAS28- kriteerein kuuden kuukauden kohdalla taudin alusta. Lisäksi tutkittiin terveyteen liittyvän elämänlaadun muutoksia kymmenen vuoden ajalta nivelreuman alusta ja näiden muutosten yhteyttä ikään ja sukupuoleen, taudin aktiviteetissa ja käsissä ja jalkaterissä todettuihin röntgenmuutoksiin samoin kuin toimintakyvyn muutoksiin. Hoitovasteetta jääneillä potilailla oli jo lähtötilanteessa huonoin terveyteen liittyvä elämänlaatu kipu- ja tunnereaktiot- ulottuvuuksissa verrattuna kohtalaisen ja hyvän hoitovasteen saaneisiin. Kymmenen vuoden seurannassa kaikki NHP- ulottuvuudet sosiaalista eristyneisyyttä lukuun ottamatta osoittivat merkittävää paranemista. Selvintä se oli ensimmäisen kuuden kuukauden aikana. Taudin aktiviteetin muutokset korreloivat kipu-, tarmokkuus- ja tunnereaktiot- ulottuvuuksien muutoksiin (p&#160;&#60; &#160;0.001). Keskimääräinen HAQ- taso säilyi hyvänä kymmenen vuoden seurannassa ja HAQ- muutokset korreloivat kipu-, liikkuminen- ja tarmokkuus- ulottuvuuksien muutosten kanssa (p&#160;&#60; &#160;0.001). Naisilla oli miehiä jonkin verran huonompi NHP-paraneminen tarmokkuus-, tunnereaktiot- ja sosiaalinen eristyneisyys- ulottuvuuksissa. Taudin kesto oli selvästi yhteydessä huonompiin liikkuminen- ja kipu- ulottuvuuksiin (p&#160;&#60; &#160;0.01). ICF- luokitusta käytettäessä potilaiden näkökulmasta kipu, liikkuminen, tarmokkuus ja uni nousivat tärkeimmiksi kategorioiksi. Tämän tutkimuksen tulokset osoittavat, että nivelreumalla on huomattava vaikutus potilaiden terveyteen liittyvään elämänlaatuun, jota varhainen ja aktiivinen hoito voi kuitenkin parantaa. ICF- viitekehyksessä NHP kattaa laajemman spektrin ICF- luokista kuin HAQ.

Abstract Fibromyalgia syndrome is associated with a number of symptoms and conditions that can impact extensively on quality of life. These include pain, sleeping problems, fatigue and depression. This research describes the sense of coherence, social support and quality of life of fibromyalgia patients, as well as the changes taking place in these areas over the course of a year. The aim is to generate knowledge that can be used to develop the care and rehabilitation of fibromyalgia patients. The key theoretical and empirical concept used is Sense of Coherence (SOC) based on the theory by Aaron Antonovsky. The data were gathered by means of a questionnaire at the beginning of the rehabilitation and then after approximately 4 and 12 months of rehabilitation. The data were gathered from a total of 169 patients in rehabilitation, 151 of them were involved at all stages. Statistical methods were used to describe and analyse the data. Differences between groups were tested using the t-test and variance analysis, the Mann-Whitney test, the Kruskall-Wallis test and the Chi-square test. Repeat measurements were carried out using the mixed model. The Pearson and Spearman coefficients were used as correlation coefficients. SOC remained fairly stable during the one-year monitoring period, standing at 59 (SD 11) for the whole group at the beginning of the rehabilitation. Social support also remained also stable during the one-year monitoring period. Health-related quality of life (15D) improved in the lowest SOC category. Depression fell over the year, while life satisfaction did not increase significantly. The interaction effect between the four SOC categories and time was statistically significant for sense of coherence and almost significant for fatigue. SOC was higher among those who were satisfied with their life as a whole, with their ability to manage self-care, leisure, vocational and financial situation, sexual life, partnership relations, family life, contacts with friends and acquaintances, health, mental resources and physical fitness. However, no differences in SOC could be seen between those who were satisfied with their vocational life and those who were not. SOC correlated positively with the support received from relatives, health-related quality of life and life satisfaction and negatively with sleep, fatigue, general wellbeing and depression. SOC correlated negatively, but not significantly, with pain. SOC correlated most strongly with depression and to almost the same extent with health-related quality of life. The research provides knowledge regarding the resources and quality of life of fibromyalgia patients who have undergone rehabilitation, and into any changes that occurred in these areas during a one-year process of rehabilitation. / Tiivistelmä Fibromyalgia-oireyhtymään liittyy useita elämän laatuun laajasti vaikuttavia oireita ja vaivoja, kuten kipua, univaikeuksia, uupumusta ja masentuneisuutta. Tämän tutkimuksen tarkoituksena on kuvata fibromyalgiaa sairastavien koherenssintunnetta, sosiaalista tukea ja elämänlaatua ja niissä vuoden aikana tapahtuvia muutoksia. Lisäksi tarkastellaan koherenssintunteen yhteyttä sosiaaliseen tukeen sekä sosiaalisen tuen ja koherenssintunteen yhteyttä elämänlaatuun. Tavoitteena on tuottaa tietoa, jota voidaan käyttää fibromyalgiaa sairastavien hoitotyön ja kuntoutuksen kehittämiseen. Keskeinen teoreettinen ja empiirinen käsite on Aaron Antonovskyn teoriaan pohjautuva koherenssintunne (SOC). Aineisto on koottu kyselylomakkeella kuntoutuksen alussa sekä noin 4 ja 12 kuukauden kuluttua kuntoutuksesta yhteensä 169 kuntoutujalta, joista 151 oli mukana kaikissa vaiheissa. Aineiston kuvaamisessa ja analyysissa käytettiin tilastollisia menetelmiä. Ryhmien välisiä eroja testattiin käyttäen t-testiä ja varianssianalyysiä, Mann-Whitneyn testiä, Kruskall-Wallisin testiä ja Khiin neliötestejä. Toistomittaukset suoritettiin käyttäen lineaarisia sekamalleja. Korrelaatiokertoimena käytettiin Pearsonin tai Spearmanin kertoimia. SOC oli melko pysyvä vuoden seuranta-aikana ollen kuntoutuksen alussa koko ryhmällä 59 (kh. 11). Myös sosiaalinen tuki läheisiltä oli pysyvä vuoden seurannassa. Terveyteen liittyvä elämänlaatu (15D) koheni alimmassa SOC-luokassa. Masentuneisuus väheni vuoden aikana, sen sijaan elämään tyytyväisyys ei merkitsevästi lisääntynyt. Neljän SOC-luokan ja ajan välinen yhdysvaikutus oli tilastollisesti merkitsevä koherenssintunteen ja melkein merkitsevä uupumuksen kohdalla. SOC oli korkeampi sellaisilla, jotka olivat tyytyväisiä elämään, kykyyn huolehtia itsestä, vapaa-aikaan, taloudelliseen tilanteeseen, sukupuolielämään, parisuhteeseen, perhe-elämään, ystävä- ja tuttavasuhteisiin, terveyteen, henkisiin voimavaroihin ja fyysiseen kuntoon, kuin niillä, jotka olivat näihin tyytymättömiä. Sen sijaan SOC ei eronnut työtilanteeseen tyytyväisten ja tyytymättömien välillä. SOC korreloi positiivisesti läheisiltä saatuun tukeen, terveyteen liittyvään elämänlaatuun ja elämään tyytyväisyyteen ja negatiivisesti uneen, uupumukseen, yleisvointiin ja masentuneisuuteen. SOC korreloi negatiivisesti, mutta ei merkitsevästi kipuun. SOC korreloi korkeimmin masentuneisuuden kanssa ja lähes samantasoisesti terveyteen liittyvän elämän laadun kanssa. Tutkimus antaa tietoa kuntoutuksessa olleiden fibromyalgiaa sairastavien voimavaroista ja elämänlaadusta ja niissä tapahtuvista muutoksista vuoden kuntoutusprosessin aikana.

Magister Scientiae (Physiotherapy) - MSc(Physio) / This study attests to the fact that disability is an issue in conflict-affected populations, in particular refugees. Refugees with disabilities living in Mayukwayukwa refugee camp also have poor HRQOL similar to other studies. Education was the only variable significantly correlated to the psychological and social domains of the HRQOL. The study highlighted that environmental and personal variables played a role in the determination of health related quality of life among refugees with disabilities. / South Africa

Background: Having the support of a partner is essential for both health related quality of life and survival in heart failure patients. However, caring for a patient with heart failure may affect the health related quality of life, well‐being and cause a burden for the partner. The partner is expected to be responsible for the care, which may have consequences for the heart failure patient’s long‐term health and well‐being. Further research to determine health related quality of life, well‐being, caregiver burden and needs of partners is warranted as well as studies evaluating interventions targeting patient‐partner dyads. Aim: The overall aim was to describe how the life situation of patient‐partner dyads was influenced by heart failure and to determine the effects of an intervention of follow‐up with education and psychosocial support for patient‐partner dyads. Design and methods: The thesis is based on three quantitative studies and one qualitative study. The first two studies were descriptive and included 135 dyads (patient‐partner) (I, II) and the randomised intervention study included a total of 155 dyads (IV). The qualitative study had a grounded theory approach. Thirteen partners were interviewed and data analysed using constant comparative method (III). Results: Caregiver burden was perceived as moderate in 30% of the partners and the rest experienced a low caregiver burden. The patients’ physical component score of SF‐36, partners’ mental component score of SF‐36 and perceived control explained 39% of the caregiver burden (I). Patients had lower health related quality of life compared to their partners in all dimensions except in the mental health domain of SF‐36 and lower qualityadjusted life year weights compared to their partners. Mental health scores were lower in partners compared to age and gender‐matched references. All other health related quality of life scores and the quality‐adjusted life year weights were comparable between the partners and the reference group. Patients had more depressive symptoms than their partners. There was no difference in the level of perceived control or knowledge about chronic heart failure between patients and partners (II). During grounded theory analysis confirmation was identified as describing the core category of the partners’ individual needs. The core category theoretically binds together three underlying subcategories: security, rest for mind and body, and inner strength. Confirmation facilitated acceptance and improvement of mental and physical health among partners (III). At the three month follow‐up the dyad‐intervention had improved perceived control in patients, but not in the partners. There were no other significant differences in the control and intervention group with regard to the dyads’ health related quality of life and symptoms of depression. There were also no differences in the patients’ self‐care behaviour and partners’ experiences of caregiver burden (IV). Conclusions and implications: Partners to patients with chronic heart failure are at risk of decreased mental well‐being. One third of the partners experienced a moderate caregiver burden and was therefore at a higher risk of poor mental health and decreased perceived control. During short‐term follow‐up the intervention with education and psychosocial support to dyads (patient‐partner) improved the level of perceived control in the chronic heart failure patient group. By identifying partnersʹ needs for security, rest for mind and body, and inner strength, healthcare professionals can confirm these needs throughout the caring process, from the critical care period and throughout rehabilitation at home. Interventions targeting dyads have been limited in previous research. Partners need to be prepared regarding the disease process, the daily regimen, hopes for the future and responsible care providers. They also need to be confirmed because they are vital to the patients’ recovery. Further, the effects of the intervention study should also include a long‐term follow‐up as well as an evaluation of the health‐economic perspective including direct and indirect costs of care.

The thesis has been prepared in a paper-based format and includes three papers: Paper 1, a systematic review; Paper 2, an empirical study; and Paper 3, a critical appraisal and reflection on the work. Paper 1 has been prepared for submission to Neuro-Oncology. The paper presents a systematic review of 21 studies concerning the relationships of demographic, clinical and mental health factors on health-related quality of life (HRQoL) and psychological functioning in adults with primary malignant brain tumours. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) principles. Methodological qualities of studies included were appraised using a checklist based on the Newcastle-Ottawa Scale (Wells et al, n.d.).Findings were synthesised narratively adhering to published guidelines (Popay et al, 2006). The review identified evidence for factors relating to HRQoL and psychological functioning, offered several considerations for clinical practice, and outlined recommendations for improving the methodological rigour of future research. Paper 2 has been prepared for submission to Psycho-Oncology and presents the findings of a qualitative study of patients’ psychological adjustment to glioblastoma, the most aggressive and most common form of brain tumour in adults. Semi-structured interviews were conducted with 10 participants 3.3-5.1 months post-diagnosis. Data were analysed using a constructivist grounded theory methodology (Charmaz, 2014). Analysis yielded three theoretical categories describing processes of maintaining continuity with the past, reframing the present and changing to accommodate an uncertain future. The implications of these findings on current supportive interventions are discussed. Paper 3 is not intended for publication. It offers a critical appraisal of the individual papers and the research process overall, considering their strengths and limitations. The paper also discusses issues of reflexivity encountered during the empirical study, and considers the implications of this research for the author’s professional development as a clinical psychologist.