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.

Long Term Conditions (LTCs) with co-morbid common mental health conditions of anxiety and depression present a significant challenge for UK health and social care services. Depression and anxiety are common in heart failure (HF) patient populations and research suggests depression has a detrimental effect on a range of health outcomes, including Health related Quality of Life (HRQoL). The impact of anxiety is relatively under-researched in this patient group. In this doctoral study a systematic review was conducted to consolidate the evidence base for the prevalence and variance of rates of anxiety in HF patients. Importantly, the relative contribution of anxiety symptoms, measured using the Hospital Anxiety and Depression Scale (HADS), to reported HRQoL , measured using the Kansas City Cardiomyopathy Questionnarie (KCCQ) was examined in a cross-sectional survey of 158 HF patients attending specialist HF outpatient clinics. The systematic review identified 72 studies, with reported rates of anxiety varying dramatically, ranging from 6.2% to 72.3%. The random effects pooled prevalence estimate for anxiety disorders was 13.01% (95% CI 9.3% - 16.9%), for probable clinically significant anxiety was 28.8% (95% CI 23.3% - 34.3%) and the random effects pooled prevalence estimate for elevated symptoms of anxiety was 55.5% (95% CI 48.1% - 62.8%). Not all tools used to assess anxiety were population appropriate. In the survey multivariate analysis found that anxiety symptoms, did not account for a significant proportion of unique variance in HRQoL scores. Higher levels of physical symptom burden, depression and an increased number of physical co-morbidities predominantly account for 69% of the variance in HRQoL (F13,125 = p <0.0005). The findings highlight the need for accurate and valid measurement of anxiety and depression within the context of a physical LTC. Anxiety and depression are common in HF patients and the evidence suggests depression in particular predicts reported HRQoL. Further research is required to understand more about the role of anxiety in influencing patient’s health outcomes.

A Hipertensão Arterial Sistêmica (HAS) é uma doença crônica não transmissível com etiologia multifatorial e uma das principais causas de doenças cardiovasculares que são responsáveis pela maioria das mortes mundiais. Por ser tratar de uma doença de alta prevalência e na maioria das vezes assintomática, a adesão do hipertenso ao tratamento tem uma representação muito baixa, o que requer a intervenção educacional dos profissionais da saúde no tratamento, na prevenção das complicações e na manutenção da vida. A qualidade de vida relacionada à saúde (QVRS) dos indivíduos com hipertensão arterial é menor comparada com a população geral. A avaliação dos fatores que influenciam na QVRS dos hipertensos pode servir de subsídios no planejamento de estratégias de tratamento mais eficazes para essa população. Objetivos: Caracterizar os indivíduos com hipertensão arterial participantes do grupo de convivência educativa segundo as variáveis: sócio-demográficas e econômica; hábitos de vida (atividade física, tabagismo, consumo de bebida alcoólica); dados relacionados a HAS(co-morbidades, uso de medicamentos anti-hipertensivos, controle dos níveis pressóricos, tempo de progressão da HAS) e tempo de participação nas atividades educativas em grupo, comparar a QVRS entre hipertensos participantes do grupo de convivência educativa com as variáveis sócio-demográficas, econômicas e clínicas e avaliar a contribuição do grupo de convivência na qualidade de vida dos hipertensos. Material e Métodos: Foi realizado um estudo descritivo do tipo transversal com 131 sujeitos com idade superior a 18 anos e diagnóstico de hipertensão arterial, residentes no município de Sacramento-MG, cadastrados no grupo de convivência no período mínimo de um ano anterior a data da entrevista. Os instrumentos utilizados para a coleta de dados foram: instrumento para caracterização da população quanto aos dados clínicos e sóciodemográficos e econômicos e o Medical Outcomes Short-Form Health Survey (SF-36) para avaliação da QVRS. Resultados: Dos pacientes, 98 eram mulheres e 33 homens, a maioria idosa 88(67,2%), com predomínio na faixa etária de 60 a 69 anos 43(32,8%) e ganham igual ou menos que um salário mínimo por mês 88(67,2%). As dimensões do SF-36 que obtiveram menores escores foram: vitalidade (64,4) e dor (70,3), enquanto as dimensões que apresentaram maiores escores foram: aspectos sociais (86,7) e capacidade funcional (79,4). Os fatores que apresentaram relação com a variação dos escores médios e correlação das dimensões do SF-36 foram: renda, atividade física, número de morbidades, diabetes, obesidade. A participação no grupo apresentou relação estatisticamente significante apenas no domínio saúde mental. Conclusão: Clinicamente os resultados mostraram relevância para intervenções educativas pela equipe de saúde. Os enfermeiros como elementos constituintes destas equipes devem estar presentes e ativos em todas as etapas desse trabalho, desde o planejamento, execução e avaliação colaborando na busca de meios efetivos que vão de encontro com a melhoria da qualidade de vida dessa população. / Arterial Hypertension is a non-transmissible chronic disease with multifactorial etiology and it is one of the main causes of cardiovascular diseases which are the leading cause of death in the world. Since the disease is characterized as having a high prevalence rate and in most cases it is asymptomatic, the treatment adherence rate is low, therefore requiring educational intervention from health professionals during the treatment in order to prevent complications and to keep the patient alive. Health-related quality of life (HRQoL) in patients with high blood pressure is reduced when compared to the general population. The evaluation of factors influencing on the HRQoL of high blood pressure patients point to the strategic planning of more efficient treatments to this population. Aims: Characterize the high blood pressure patients participating in the educational gathering group according to the following variables: socio-demographics and economics; lifestyles (physical activity, smoking, drinking); data related to systemic arterial hypertension (comorbidity, use of antidepressive drugs, blood pressure rate control, systemic arterial hypertension progression rate) and participation time in educational group activities, comparison of HRQoL among the group participating patients with the socio-demographical, economical and clinical variables and evaluate the contribution of the group to the quality of life of the participating patients. Methods and Materials: It was performed a descriptive cross-sectional study with 131 individuals over 18 years of age who suffered from high blood pressure. The patients lived in the city of Sacramento ? MG and had been participating in the gathering group for at least one year prior to the interview. The following tools were used to collect the data: Tools to characterize the population according to clinical, socio-demographical and economical data; Medical Outcomes Short-Form Health Survey (SF-36) to evaluate HRQoL. Results: From the total of 131 patients, 98 were female and 33 were male. Most of them (88 patients or 67.2%) were in an advanced age ranging from 60 to 69 years old (43 patients or 32.8%) and earned minimal wage or less (88 patients or 67.2%). The SF-36 dimensions with the lowest scores were: Vitality (64.4) and pain (70.3), whereas the dimensions with the highest scores were: Social functioning (86.7) and functional status (79.4). The factors presenting relation to the average score variation and dimension correlation in the SF-36 were: Income; physical activity; death rate; diabetes, obesity. The participation in the group was statiscally significant relation only to the mental health dimension. Conclusion: The results clinically showed the relevance of educational interventions performed by the health team. The nurses, as part of this team, must be present and active in all the stages of this work, planning, performing and searching for effective methods that lead to the improvement of life quality for this population.