O câncer de pulmão é uma doença maligna que acomete principalmente a população de adultos e idosos na faixa etária dos 40 aos 80 anos. Sua principal causa continua sendo o tabagismo, e sua sobrevida varia com o estadiamento da doença no momento do diagnóstico e sua alta taxa de mortalidade está associada ao diagnóstico tardio da doença, o que limita as opções de tratamento curativo. A Qualidade de Vida Relacionada à Saúde (QVRS) de sujeitos com câncer de pulmão é influenciada por múltiplos fatores, incluindo sintomas, capacidade funcional, estratégias de enfrentamento e rede social de suporte, dentre outros. Entretanto, ainda falta esclarecer o impacto da fadiga na QVRS de pessoas com câncer de pulmão avançado. O objetivo deste estudo é avaliar a QVRS e a fadiga de sujeitos com diagnóstico de câncer de pulmão em cuidados paliativos e identificar a relação entre a presença de fadiga e percepção da QVRS desta população. Trata-se de um estudo transversal e com abordagem quantitativa, correlacional, com uma casuística composta por 120 sujeitos, sendo 60 com câncer de pulmão em cuidados paliativos (grupo de estudo) e 60 sem diagnóstico oncológico (grupo controle). Durante a coleta de dados foram aplicadas as escalas: Karnofsky Performance Scale (KPS), o Critério de Classificação Econômica Brasil (CCEB - versão 2014), a Escala de Fadiga de Piper - revisada e a European Organization for Research in the Treatment of Cancer Questionnaire-core 30 (EORTC- QLQ-C30), com seu módulo específico para câncer de pulmão - o Quality of Life Questionnaire Lung Cancer 13 (QLQ-LC13). Para a análise dos resultados foi realizada estatística descritiva (Mediana, Mínimo e Máximo e 1º e 3º quartil) e testes não paramétricos de Mann-Whitney e Kruskal-Wallis para a comparação entre os grupos e variáveis. Os resultados indicaram que houve significância estatística na comparação entre os grupos para as escalas funcionais, de sintomas e dificuldades financeiras do EORTC QLQ-C30 e para os sintomas associados ao câncer e/ou decorrentes do seu tratamento avaliados pelo módulo QLQ-LC13, bem como para a presença de fadiga. A fadiga foi identificada como o sintoma mais frequente nessa população, relacionada com capacidade funcional reduzida (avaliada pelo KPS) e pior percepção da QVRS. Portanto, sujeitos com diagnóstico de câncer de pulmão em cuidados paliativos apresentam maior carga do sintoma fadiga em comparação com a população em geral e quanto maior a fadiga e de outros sintomas, maior o comprometimento da QVRS dos sujeitos com câncer de pulmão em cuidados paliativos. Este estudo traz contribuições relevantes à Saúde Pública por meio da investigação da relação entre doenças crônicas oncológicas e qualidade de vida relacionada à saúde, para o tratamento sujeitos com câncer de pulmão em cuidados paliativos e que apresentam a fadiga como fator limitante para a realização de suas atividades diárias bem como para os diversos profissionais que atuam na atenção à pessoa com uma condição oncológica em cuidados paliativos / Lung cancer is a malignant disease that mostly affects adults aged between 40 to 80 years old. The main cause of lung cancer is smoking and the survival varies according with the disease stage at the moment of the diagnosis and the high lung cancer mortality rate is related to a late diagnosis, which limits the curative treatment options.. Health Related Quality of Life (HRQoL) of people who have lung cancer is influenced by multiple factors including symptoms, functional capacity, coping strategies and social support networking, among others. However, there is still a need for clarify the impact of fatigue on HRQoL of people with advanced lung cancer. The purpose of this study was to evaluate HRQoL and fatigue of subjects diagnosed with lung cancer in palliative care and identify the relationship between the presence of fatigue and perception of hrqol in this population. this is a cross-sectional, quantitative and correlational approach in which sample was composed of 120 subjects, 60 of them with lung cancer in palliative care (study group) and the others 60 without cancer diagnosis (control group). During data collection were applied the scales: Karnofsky Performance Scale (KPS), Brazil Criterion of Economic Classification (CCEB - version 2014), the Piper Fatigue Scale - Revised and the European Organization for Research in the Treatment of Cancer Questionnaire-Core 30 (EORTC-QLQ-C30), with its specific module for lung cancer - the Quality of Life Questionnaire lung Cancer 13 (QLQ-LC13). For data analysis it was performed descriptive statistics (median, Minimum and Maximum and 1st and 3rd quartile) and two non-parametric statistical tests -- Mann Whitney and Kruskal-Wallis. for comparison between groups and variables. The results indicated significant statistical differences when comparing the groups for the functional and symptoms scales, for the financial difficulties of EORTC QLQ-C30 and symptoms related to and/or resulting from lung cancer and its treatment evaluated by QLQ-LC13 module and for fatigue presence. Fatigue was identified as the most frequent symptom in this population, it\'s related to reduced functional capacity (assessed by KPS) and worse perception of HRQoL. Therefore, subjects diagnosed with lung cancer in palliative care have a higher burden of fatigue compared to general population and the greater fatigue and other symptoms, the greater HRQOL impairment of lung cancer patients in palliative care. This study provides important contributions to public health by investigating the relationship between chronic diseases and oncology HRQoL, to treatment of lung cancer people in palliative care who have fatigue as a limiting factor to carrying on their daily activities and to health professionals who works with oncologic palliative care

Submitted by PPG Pediatria e Sa?de da Crian?a (pediatria-pg@pucrs.br) on 2018-09-25T11:25:50Z No. of bitstreams: 1 Disserta??o Marcia 1009.pdf: 1390337 bytes, checksum: ffbfe58c2bec3b4163c252680f70cb88 (MD5) / Approved for entry into archive by Sheila Dias (sheila.dias@pucrs.br) on 2018-09-27T11:21:25Z (GMT) No. of bitstreams: 1 Disserta??o Marcia 1009.pdf: 1390337 bytes, checksum: ffbfe58c2bec3b4163c252680f70cb88 (MD5) / Made available in DSpace on 2018-09-27T11:25:52Z (GMT). No. of bitstreams: 1 Disserta??o Marcia 1009.pdf: 1390337 bytes, checksum: ffbfe58c2bec3b4163c252680f70cb88 (MD5) Previous issue date: 2018-06-25 / Introduction: Post-Infectious Obliterating Bronchiolitis is a chronic obstructive pulmonary disease that affects the distal airways. Pneumopathy is rare and severe, does not have a definite cause, numerous causes lead to the picture of a secondary insult. Subjective measures such as health-related quality of life (HRQoL) are being increasingly used to measure the impact of Bronchiolitis Obliterans on children's lives. Currently, there is a paucity of studies that have evaluated health-related quality of life in patients with Post-Infectious Bronchiolitis Obliterating. Objective: To assess the level of agreement in health-related quality of life (HRQoL) between children with Post Infectious Bronchiolitis Obliterans (PIBOPI) and their parent (so-called proxy). Methodology: Participants aged between 8-17, which had been previously diagnosed with PIBOPI, were regularly followed up at a pediatric pulmonology outpatient clinic. Parents or legal guardians (caregivers) of these patients were also recruited for they. A validated and age-appropriate version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) was used for the assessment of HRQoL. Caregivers completed the corresponding proxy versions of the questionnaire. The correlation between self and proxy reports of HRQoL was determined by intra-class correlation coefficient (ICC), and dependent t-tests. Results: The majority of the participants were males (79.4%), and the average age was 11.8 years. Intra-class correlations between each of the PedsQL domains and the total score were all lower than 0.6, with a range between 0.267 (poor) and 0.530 (fair). When the means of each domain and the total score of the questionnaires were compared, caregivers were observed to score significantly lower HRQoL than children, with the exception of the social domain in which the difference was not significant. However, the differences in score exceeded the critical threshold difference of 4 points in all other domains. Conclusions: Proxys from patients with Post Infectious Bronchiolitis Obliterans tend to report lower quality of life scores than patients themselves. / Introdu??o: Bronquiolite Obliterante P?s-Infecciosa ? uma doen?a pulmonar obstrutiva cr?nica, que afeta as vias a?reas distais. A doen?a ? rara e grave, n?o tem uma causa definida, in?meras causas levam ao quadro de um insulto secund?rio. Medidas subjetivas como qualidade de vida relacionada ? sa?de (QVRS),est?o sendo cada vez mais utilizado para aferir o impacto da Bronquiolite Obliterante na vida das crian?as. Atualmente, existe uma escassez de estudos que tenham avaliado a qualidade de vida relacionada ? sa?de em pacientes com Bronquiolite Obliterante P?s-infecciosa. Objetivo: Avaliar o n?vel de concord?ncia da Qualidade de Vida Relacionada ? Sa?de (QVRS) entre crian?as com Bronquiolite Obliterante P?s-infecciosa (BOPI) e seus pais (Proxy). M?todos: Participantes com idade entre 8-17 anos, previamente diagnosticados com BOPI, foram acompanhados regularmente em ambulat?rios especializados de pneumologia pedi?trica. Os pais ou os representantes legais (cuidadores) destes pacientes tamb?m foram recrutados para o estudo. Para avalia??o da QVRS foi aplicada a vers?o validada do instrumento Pediatric Quality of Life Inventory 4.0 (PedsQl). Os cuidadores responderam a vers?o correspondente do question?rio para o Proxy. A correla??o dos relatos da QVRS entre as crian?as e seus Proxy foi determinado mediante o coeficiente de correla??o intraclasse (CCI) e teste t para a amostras independentes. Resultados: A maioria dos participantes era do sexo masculino, (79,4%), a m?dia de idade foi de 11,8 anos. Os CCI entre cada um dos dom?nios do PedsQL, bem como o escore total foram inferiores a 0,6, variando entre 0,267 (pobre) e 0,530 (satisfat?ria). As m?dias dos dom?nios e do escore total dos question?rios respondidos pelos pacientes e aquelas relatadas pelos respons?veis comparadas demonstraram que o escore dos cuidadores foi significativamente menor do que o das crian?as, com exce??o apenas para o dom?nio social, cuja diferen?a n?o foi significativa. Todavia, as diferen?as ultrapassaram a diferen?a m?nima importante de 4 pontos no escore para todos os dom?nios. Conclus?o: Os Proxys dos pacientes com Bronquiolite Obliternante P?s-infecciosa tendem a relatar menores escores de qualidade de vida que os pr?prios pacientes.

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.

The effectiveness of treatments for degenerative spine conditions, where the primary symptom is back pain, is typically determined using patient-reported quality of life (QoL) measures. However, patients may adjust their internal standards when scoring QoL based on factors other than their health. This response shift phenomenon could confound the interpretation of study data and impact effectiveness conclusions. In the current study, response shift was examined using structural equation modeling (SEM) and previously collected clinical trial data comparing 2 minimally invasive medical devices in lumbar spinal stenosis patients through 1 year postintervention. In subject QoL results, reprioritization shift between 3 months and 12 months that could confound standard analysis was identified. Treatment group did not influence response shift identified at 12 months. SEM provided an effective and practical tool for clinical investigators to assess response shift in available clinical study data. As response shift could lead to invalid conclusions when QoL measures are analyzed, clinical investigators should include response shift assessment in the design of clinical trials. This research into how response shift phenomenon can impact clinical trial results improves the ability of clinical investigators to interpret clinical trial data, potentially preventing erroneous conclusions. This research may also assist researchers and government regulators in the identification and reimbursement of beneficial, cost-effective medical treatments for patients worldwide. For clinical research designers, this study demonstrates a practical application of response shift assessment.

A disproportionate number of African American women are at increased risk for uterine fibroid tumors (UF) compared to their Caucasian, Asian, and Hispanic counterparts. Researchers have indicated that women diagnosed with UF can have a poorer health-related quality of life (HRQOL) when compared to women who do not have a diagnosis of UF. The overall aim of this study was to explore the impact of UF symptoms on the HRQOL of African American women. A quantitative, cross-sectional design was employed utilizing the revised version of Wilson and Cleary's model of HRQOL. A sample was gathered of 80 participants who were African American women between age 30 and 45 years with a current diagnosis of UF. Linear and multiple hierarchical regressions were performed to determine the relationship among UF symptom severity and HRQOL based on 6 subscales of HRQOL (as measured by the UFS-QOL). There was a statistically significant association between symptom severity, the 6 subscale variables of HRQOL, and employment. No significant associations were observed with age, family history (hx) of UF diagnosis, body mass index, general health perception, overall quality of life, and symptom severity. The social change implication for this study is to provide information that can direct health care providers in the development of health maintenance programs that are sensitive to the needs of African American women diagnosed with UF. In addition it will promote the need for public health professionals and medical organizations to increase the availability of information related to UF symptoms and the impact of UF symptoms on HRQOL among women.

The development of major commercial airports promotes the air transport industry and generates positive economic benefits to the airport and to its host economy. However, external costs are associated with these benefits. Any increase in aircraft movement causes negative environmental impacts, especially noise pollution. Governments have reduced aircraft noise levels at their sources, or introduced aircraft noise management strategies (ANMS); however the problems have never been satisfactorily resolved. This research aims at developing a better understanding of the impacts of aircraft noise on community health and well-being by exploring two core research questions: (1) ???Is health related quality of life worse in communities chronically exposed to aircraft noise than in communities not exposed????; and (2) ???Does long-term aircraft noise exposure associate with adult high blood pressure level via noise stress as a mediating factor????. The Sydney (Kingsford Smith) Airport has been selected as a case study. The health survey instruments have been developed and piloted, and then translated from English into Greek and Arabic. A postal self-administrative health survey (with follow-up letters) has been implemented in the areas surrounding Sydney Airport (called ???aircraft noise exposure group???) and in the matched control group. The total sample size was 1,500 with 47% response rate. This thesis has developed a ???new??? noise index (named Noise Gap Index, NGI) to describe and assess aircraft noise in such a way that is easily understood by the layperson. Factorial analysis of covariance revealed that ???Health related quality of life, in term of physical functioning, general health, vitality, and mental health, of community chronically exposed to high aircraft noise level were worse than the matched control area???. Binary logistic regression analysis found that ???Subjects (aged 15 ??? 87) who have been chronically exposed to high aircraft noise level have the odds of 2.61 of having chronic noise stress. In addition person who have chronic noise stress have the odds of 2.74 of having hypertension compared with those without chronic noise stress???. Finally, the robust hypotheses of effects of aircraft noise on community health and well-being for future experimental study were proposed.

<p>Syfte med denna enkätstudie var att undersöka hälsorelaterad livskvalitet (HRQOL) tolv månader efter utskrivning från intensivvårdavdelning mellan kvinnor och män och mellan yngre (< 65 år) och äldre (≥65 år). Huvudresultatet visade att det fanns signifikanta skillnader mellan kvinnor och män hur de skattar HRQOL i delskala smärta. Ingen signifikant skillnad fanns mellan yngre och äldre. Även med ett litet antal patienter är skattad HRQOL för hela undersökningsgruppen jämförbar med större studier inom område som mäter HRQOL med SF-36.</p> / <p>The aim of the study was to assess health-related quality of life (HRQOL) twelve months after discharge from the intensive care unit (ICU) as well as to study if there were differences in HRQOL between younger (<65 years) and older (≥65 years) patients. There were significant differences between women and men in how they estimated HRQOL in the domain pain. No significant differences existed between younger and older patients and the HRQOL overall twelve months after discharge from ICU were consistent with previous HRQOL SF-36 research results even with a small sample of patients.</p>

<p>The overall aim of this thesis is to investigate health-related quality of life (HRQoL), anxiety and depression in patients with endocrine gastrointestinal (GI) tumours. Patient as well as staff perceptions were assessed. HRQoL was studied with the EORTC QLQ-C30, and anxiety and depression with the Hospital Anxiety and Depression Scale. In addition, patient perceptions of the importance of and satisfaction with selected HRQoL aspects were investigated. Semi-structured interviews with open-ended questions were conducted to identify disease- and treatment-related distress, what constitutes a good quality of life and strategies to "keep a good mood" among these patients. Patients reported a relatively good HRQoL and low levels of anxiety and depression. However, they reported a lower HRQoL than could be expected for healthy people of similar age and gender. Staff gave a more pessimistic view of patient satisfaction with HRQoL aspects than did patients, and staff did not accurately judge individual patients' levels of anxiety and depression. Importance>satisfaction discrepancies for HRQoL aspects may identify patients with a low quality of life. HRQoL, anxiety and depression did not change substantially during the first year of treatment. Categories identified through content analysis of interview data concerning distress and quality of life were referred to physical, emotional or social dimensions. Identified strategies to "keep a good mood" were classified as Internal or External. Most categories of distress that were identified are covered by the EORTC QLQ-C30 and/or the HADS, but some additional emotional and social aspects of distress emerged from the interview data. Receiving good care was identified as a strategy to "keep a good mood". This result indicates a possible and potentially important relation between the quality of care and patient HRQoL.</p>

Sleep is a basic need, important to physical and psychological recovery. Insomnia implies sleep-related complaints, such as difficulty falling asleep, difficulty staying asleep, early awakening, or non-restorative sleep (NRS) in an individual who has adequate circumstances and opportunity to sleep.  Insomnia is also related to impairment of daytime functions. The prevalence of reported sleep disturbances varies between 15% and 60% in patients with coronary artery disease (CAD) up to five years after intervention. Disturbed sleep may have a negative impact on self-care capacity and behaviours. Little attention has been given to evaluation of sleep promotion through individualized non-pharmacological interventions among CAD patients. The overall aim of this thesis was to describe the impact of sleep quality and disrupted sleep on health-related quality of life (HRQoL) in patients with stable CAD, in comparison to a population-based group. The objective was also to evaluate an individualized non-pharmacological programme to promote self-care in sleep. Four studies were conducted during seven years, starting in 2001. Patients from six hospitals in the south of Sweden were invited to participate. In addition, an age and gender matched population-based group was randomly selected during the same period as the patients and was used for comparison with the CAD patients in two of the studies. Data was collected through interviews, self-reported questionnaires, a study specific sleep diary and actigraphy registrations. A pretest-posttest control design was used to evaluate whether an individualized non-pharmacological intervention programme could promote self-care in sleep-activity in CAD patients. The results showed a high prevalence of insomniac CAD patients out of whom a large proportion were non-rested insomniacs. This showed that NRS is one of the core symptoms of insomnia. On the other hand there were weak or non-significant gender differences with increasing insomnia severity. Severe insomniac CAD patients displayed a two or threefold higher presleep arousal or anxiety score and were more limited in taking physical exercise than the general population. Generally low sleep efficiency (SE%) was revealed in the studies, particularly among severe non-rested insomniac CAD patients. Among CAD patients, the individualized non-pharmacological programme to promote self-care in sleep-activity indicated improvements in sleep and HRQoL. This thesis elucidates the importance of focusing on the individual’s perception of their sleep-activity and health in their local context and supporting self-care management. Furthermore, it is of importance that nurses set individual goals together with the patient in order to increase self-efficacy to promote HRQoL.

The overall aim of this thesis is to investigate health-related quality of life (HRQoL), anxiety and depression in patients with endocrine gastrointestinal (GI) tumours. Patient as well as staff perceptions were assessed. HRQoL was studied with the EORTC QLQ-C30, and anxiety and depression with the Hospital Anxiety and Depression Scale. In addition, patient perceptions of the importance of and satisfaction with selected HRQoL aspects were investigated. Semi-structured interviews with open-ended questions were conducted to identify disease- and treatment-related distress, what constitutes a good quality of life and strategies to "keep a good mood" among these patients. Patients reported a relatively good HRQoL and low levels of anxiety and depression. However, they reported a lower HRQoL than could be expected for healthy people of similar age and gender. Staff gave a more pessimistic view of patient satisfaction with HRQoL aspects than did patients, and staff did not accurately judge individual patients' levels of anxiety and depression. Importance&gt;satisfaction discrepancies for HRQoL aspects may identify patients with a low quality of life. HRQoL, anxiety and depression did not change substantially during the first year of treatment. Categories identified through content analysis of interview data concerning distress and quality of life were referred to physical, emotional or social dimensions. Identified strategies to "keep a good mood" were classified as Internal or External. Most categories of distress that were identified are covered by the EORTC QLQ-C30 and/or the HADS, but some additional emotional and social aspects of distress emerged from the interview data. Receiving good care was identified as a strategy to "keep a good mood". This result indicates a possible and potentially important relation between the quality of care and patient HRQoL.