Introduction with Hypothesis/Objective: Management of long-term conditions requires a holistic approach, which places equal emphasis on the biomedical and the psychosocial. In chronic kidney disease (CKD), whilst biochemical and haematological parameters are routinely measured in accordance with UK Renal Association Standards and Guidelines this is not the case for health-related quality of life (HRQoL).There is evidence that achieving Renal Association biochemical/haematological targets improves mortality & morbidity. However, little evidence is available on whether achieving these targets enhances health-related quality of life (HRQoL). This study’s primary aim was, therefore, to determine whether there was any association between the extent to which patients achieved Renal Association biochemical and haematological targets and their HRQoL. A secondary aim was to explore the association between demographic and other treatment-related factors and HRQoL.Methods: A cross-sectional postal survey was conducted, involving 301 adult maintenance haemodialysis patients (age 18 + yrs.) in North-west England. HRQoL data were collected using the KDQoL-SF and patient records were searched for demographic variables and key biochemical/haematological markers derived from the UK Renal Association Standards and Guidelines. Biomarker achievement was categorised as ‘low achievers’ (patients who reached 0 – 2 Renal Association targets), ’medium achievers’ (3 – 5 targets) and ‘high achievers’ (6 – 8 targets). Data were initially analysed descriptively then using univariate and multivariate (multiple regression) analysis. Results: Participants were older (mean age 63.4 years), mostly male (64.0%) and predominantly white (87.0%); they had been on HD for a mean of 42.0 months (median 28.0). Patients typically had low scores for most aspects of HRQoL. For Renal Association targets, 5.6 % of the sample were ‘low achievers’, 57.1% ‘medium achievers’ and 35.2% ‘high achievers’. Apart from the KDQoL-SF subscale of symptom/problem list (medium achievers p<0.012, high achievers p<0.009), there was no association between HRQoL and the level of RA biomarkers achieved. Being Asian was negatively associated with several KDQoL-SF subscales. Increased age was positively associated with many subscales, suggesting a better toleration of poor health in older patients. The individual biomarker albumin was negatively associated with a number of the KDQoL subscales. Conclusion: The study’s findings demonstrate little association between achievement of Renal Association biochemical/haematological targets and HRQoL. A more holistic approach is required to address other aspects of physical and psychological health. Guidelines are needed that contain recommendations for routine monitoring of HRQoL scores. There is a need for better recognition of HRQoL as a specific treatment goal.

Survival following critical illness is associated with a significant burden of physical and psychosocial morbidity and recovery is often protracted and/or incomplete. Recovery has been measured using, almost exclusively, generic health-related quality of life (HRQoL) questionnaires. There is, however, an inexorable lack of consensus on the conceptual definition of HRQoL, and existing measures have tended to reflect overtly biomedical concerns such as morbidity and impairment at population level. Limited empirical or theoretical work has examined the extent to which widely used measures reflect the individual’s concerns, “health”-related and otherwise. The primary aims of this PhD are to examine HRQoL among a rarely studied sub group of the critically ill patient population: survivors of prolonged critical illness, and to explore the extent to which professionally endorsed measures capture their experiences of and perspectives on the recovery process. The implications of “patient-centredness” are both diverse and far-reaching in terms of policy, practice and critical care outcomes research, and are discussed throughout. A review of the literature among a well studied sub group of the patient population (survivors of Adult Respiratory Distress Syndrome) identified the widespread use of generic and ancillary measures which were invariably developed for use among other patient populations. This approach was seen to offer limited insight to the putative relationship between critical illness-related morbidity and HRQoL. Reflecting existing professional recommendations and practice, the Short Form 36 (SF-36) and the EuroQoL were administered by post to 20 survivors of prolonged critical illness at up to 6 months following ICU discharge. Each subsequently participated in a semi-structured interview, the purpose of which was to explore experiences and perceptions of ongoing morbidity within the contexts of the critical illness “journey” and, importantly, everyday life. A small number (n=5) participated in cognitive interview in order to explore both the everyday logistics of questionnaire completion and the often startling inconsistencies between verbal and questionnaire response. Analysis here revealed the unexpectedly diverse and normally hidden processes through which survivors interpreted and responded to standardised questionnaire items, challenging traditional (i.e. psychometric) notions of validity. Data from the semi-structured interviews were “mapped” onto the dimensions of the SF-36, revealing the highly contextualised and complex inter-relatedness of biomedically defined and ostensibly discrete aspects of experience. Morbidity was conceptualised by survivors in terms of the adaptive and interpretive processes adopted in everyday life (as opposed to a source of loss) and was generally under-reported in questionnaire form. An alternative explanatory framework for HRQoL was subsequently developed. Data were also analysed with reference to the “biographical narrative” of critical illness, a strategy which revealed the significance of survivors’ own stock of “life experience” (health-related and otherwise) in these interpretive and adaptive processes. The unexpectedly phlegmatic nature of survivors’ accounts directed attention to the narrative form, lending credibility to survivors’ claims that “things weren’t that bad”; accounts of seemingly intolerable morbidity were perceived, for example, as “a lucky escape”. This data also revealed, however, the influence of shortfalls in the processes and delivery of acute hospital rehabilitation upon the efficacy of these interpretive and adaptive processes. Mixed methods approaches to HRQoL, in summary, offer significant insights into survivors’ conceptualisations of morbidity, recovery, quality of life and the complex inter-relationships therein. Attention to the processes of adaptation also offers significant potential for the development of patient-centred measures of outcome and the expedition of the recovery process in ways which are most meaningful to survivors.

Bakgrund: Över 150 000 människor i Sverige behandlas årligen för hjärt- och kärlsjukdom. En vanlig form är ateroskleros, åderförkalkning. Av alla de som idag avlider på grund av annan orsak än naturligt åldrande, gör de flesta det av komplikationer till aterosklerossjukdom. En av dessa komplikationer är aortaanerysm, mera känt som ”pulsåderbråck”. Det vanligast förekommande är abdominellt aortaanerysm, bukaortaaneurysm. Syfte: Syftet med denna studie var att belysa livssituationer, livskvalitet och omvårdnadsbehov hos patienter med diagnosen AAA samt att visa på omvårdnadsåtgärder som främjar hälsa hos patienter med denna diagnos. Metod: En litteraturgranskning gjordes i databaserna PubMed, Chinal och Psychinfo samt Högskolan Dalarnas sökmotor Elin. Artiklarna valdes ut efter relevans till syftet. Dess kvalitet värderades med hjälp av granskningsmallar. Fyra kvalitativa och 16 kvantitativa ansatser ingick i studien. Resultat: Det framkom att HRQoL hos patienter som fick diagnosen AAA försämrades signifikant perioperativt. Oro och rädsla samt känslor av overklighet, nära döden upplevelser och existentiella frågor var vanligt perioperativt. Ingen påvisbar skillnad före och efter screening i HRQoL eller upplevd hälsa iakttogs. Mer information kring exempelvis sexualitet perioperativt kunde lindra oro och rädsla. Diskussion: Omvårdnaden är otillräcklig vid diagnostillfället samt postoperativt. Screening har positiv inverkan på patienternas generella hälsa. Konklusion: Studien visade på ökat behov av omvårdnad i samband med att diagnosen ställts samt efter utskrivning postoperativt.

Background: Sleep-disturbances in persons with Alzheimer´s disease are prevalent. They are characterized as increased frequency and duration of awakenings, decreased slow-wave sleep, REM-sleep and increase of day-time napping. Depression and lower quality of life are associated with sleep-disturbances. Altogether a significant source of stress for caregivers and an important factor in institutionalization. Non-pharmacological treatment alternatives are rare. Method: Single-case A-B-C design, with non-concurrent multiple baselines, a pilotstudy. Aim: To explore if an educational program on sleep, sleep disturbances and behavioural change directed towards caregivers improved sleep, depression and quality of life in persons with Alzheimer´s disease living at home. A second aim was to test program and method. Result: Three patients/cases were included and in one case sleep was improved. Depression and quality of life outcome varied in all cases. The program and method has the potential of being useful after some adjustments. Conclusion: Non-pharmacological treatments are needed and this study shows that a behavioural program is a feasible way to improve sleep in patients with Alzheimer´s disease. More research is needed to develop method and increase overall knowledge within the area. Knowledge of sleep and non-pharmacological treatments for sleep problems are scarce in clinical environment and nurses have an important task.

Bakgrund: Bröstcancer är den vanligaste cancerformen bland kvinnor och i Sverige diagnostiseras cirka 7000 nya fall per år. Behandlingsstrategierna vid bröstcancer är i första hand kirurgi följd av eventuell strålbehandling och läkemedelsbehandling. Efter genomförd mastektomi erbjuds alla svenska kvinnor plastikkirurgisk rekonstruktion. Rekonstruktion är frivilligt men många kvinnor väljer att rekonstruera för att känna sig mer kvinnliga, mer självsäkra i sin kropp och sin sexualitet och som en “hel” människa igen. Det är framför allt yngre och ensamstående kvinnor som tycker det är viktigt med rekonstruktion. Syfte: I denna studie undersöktes livskvalitet hos mastektomerade kvinnor med eller utan efterföljande rekonstruktion, att jämföra uppfattning mellan grupperna och beroende på ålder, och hur de upplevde stödet från vården. Metod: Kvalitativ intervjustudie. 7 kvinnor intervjuades utifrån 8 öppna frågor rörande psykosocial situation relaterad till kroppsbild, sexualitet, beslutsfattande och stödbehov. Intervjuerna spelades in, transkriberades och analyserades med hjälp av innehållsanalys. Resultat: Innehållsanalysen delades in i 2 teman, livskvalitet och bröstcancerkirurgin, som delades in i 5 kategorier, psykisk hälsa, kroppsuppfattning, psykosocial hälsa, upplevelse av vården och valet: rekonstruktion/ej rekonstruktion. Oavsett om kvinnorna genomfört rekonstruktion eller inte så skattade de sin livskvalitet som god. De kvinnor som genomgått rekonstruktion skattade sin livskvalitet högre efter rekonstruktionen än innan. Beslutet om rekonstruktion togs utifrån personliga känslor och tankar. Kvinnorna som inte hade gjort rekonstruktion upplevde ingreppet som riskfyllt och onödigt. De kvinnor som genomförde rekonstruktionen ville inte känna sig stympade och efter operation upplevde att de kände sig mer kvinnliga och som en hel människa igen. Vården uppfattade kvinnorna som bra, men med ökat behov av eftervård och bättre kontinuitet. Slutsats: Oavsett om kvinnorna gjort rekonstruktion eller inte är de nöjda med sitt enskilda val och skattar sin livskvalitet god. Kvinnorna uppfattar bemötandet från vården bra men det finns ett behov av ökad kontakt efter behandlingsslut. / Background: Breast cancer is the most common cancer among women and in Sweden approximately 7000 new cases are diagnosed every year. The primary treatment for breast cancer is surgery with possible subsequent radiation therapy and chemotherapy. Following mastectomy all women in Sweden are offered a surgical breast reconstruction. This is an optional choice, but many women choose reconstruction in order to feel more feminine, more confident in their bodies and their sexuality, and as a more "whole" woman. It is mainly the younger and single women who chose to do a reconstruction. Purpose: This study examines the health related quality of life within women who did or did not undergo breast reconstruction, depending of choice, age and how they experienced the healthcare support. Method: Qualitative interview study with seven women who participated in the study. The interview contained eight open questions concerning psychosocial situation related to body image, sexuality, decision-making and support needs. The interviews were recorded, transcribed and analysed with Graneheim- and Lundmans content analysis. Results: The analysis from the transcript was categorized into 2 groups: Quality of life and the breastcancer surgery. These two groups were divided into psychic health, body image, psychosocial health, and experience of the health care and the choice of reconstruction. Both the women who chose to do the reconstruction and those who do not, rate their health related quality of life as high. The women who underwent reconstruction rated their quality of life higher after the reconstruction than before. The decision regarding reconstruction was based on personal thoughts, and women who did not do reconstruction wished to focus on wining their fight against cancer and that thought that breast reconstruction was a major surgery with a high risk of complications. Decision about reconstruction was based on feeling truncated without breasts and with the new breast they feel feminine and whole again. Conclusion: Whether the women have made a reconstruction or not they are satisfied with their individual choices and rate their quality of life as high. The women also have experienced the communication to health care staff as good, but they even experience a huge need for follow-ups. / Hälsorelaterad livskvalitet och psykosocial situation bland kvinnor från olika kulturer efter bröstcancerkirurgi med eller utan rekonstruktion.

Hirsutism is excessive hair growth in women. The prevalence is estimated at 5%. The aim of this thesis was to describe different aspects of how life is affected for women suffering from hirsutism. Both qualitative and quantitative methods were used. Study I showed that hirsutism deeply affects women’s experiences of their bodies in a negative way and was experienced as a life sorrow. In Study II the patient-physician relationship was described. The patient-physician relationship from the patient’s perspective was suboptimal, as most meetings included feelings of being rejected and even humiliation. In Study III the aim was to translate and psychometrically evaluate an instrument that measures perceived social support, “The Multidimensional Scale of Perceived Social Support” (MSPSS). The translation was performed according to WHO:s official process, and validation was performed in a sample that consisted of 281 participants, 127 women with hirsutism (main sample) and 154 nursing students. MSPSS had good psychometric properties with regard to factor structure, construct validity, internal consistency and reproducibility. Study IV described different aspects of HRQoL in the main sample, the correlation of anxiety, depression, level of hairiness, age and BMI. The F-G scores were dichotomized into minor (F-G ≤14) and major (F-G≥15) hair growth. Higher levels of hair growth were significantly correlated to a lower level of QoL measured by DLQI, EQ-5D and symptoms of both anxiety and depression measured by HADS. Study V investigated if social support was associated with quality of life and outcome of HRQoL compared to a reference group of women (n=1115). SF-36, the MSPSS and the F-G scale were used. Compared to the reference group, women with hirsutism reported lower quality of life in all dimensions of SF-36 (p&lt;0.01) The dimension most affected was vitality (VT=41.2), which had a lower value than has been reported for patients with MS and myasthenia gravis. A Multiple Regression Analysis showed a significant relation between quality of life and social support, indicating its importance for the ability to adapt, in spite of low quality of life.

The purpose of this study was to investigate how patients who had undergone Hallberg's  TIA-school at Enköpings Lasarett rate their physical and mental health 18 months after participation. Another purpose was to examine whether they re-diagnosed with a TIA or suffered a stroke. The design of the quantitative study was longitudinal and descriptive. In the study 16 patients participated and to measure their mental and physical health the questionnaire SF36 was used. The results showed that none of the participants suffered a new TIA or stroke since participation in the TIA-school. The participants' self-rated health measured with SF36 showed the highest values ​​in the areas of social function, emotional role function and physical role function. Which indicates a good self-rated health in these areas. Participants were asked how their physical and mental health limited them in everyday life. The majority of participants was not limited at all during the day, either physically (50%) or psychologically (62.5%). Our results demonstrate that a TIA-school like the one at Enköpings Lasarett may have long-term effects on an individual basis, but this effect can not be demonstrated in all off the patients.

Experiencing respiratory symptoms in conjunction with exercise is common in children and adolescents and can have a negative impact on daily life. The aim of the thesis was to estimate the prevalence of exercise-induced dyspnoea, exercise-induced bronchoconstriction (EIB) and exercise-induced laryngeal obstruction (E-ILO) in a general adolescent population, and to explore factors associated with EIB. Methods: All 12-13-year-old adolescents in the city of Uppsala (n=3,838) participated in a survey on exercise-induced dyspnoea. A subsample of adolescents who answered the survey, 103 randomly selected adolescents reporting exercise-induced dyspnoea and 47 random adolescents who did not report exercise-induced dyspnoea underwent standardised treadmill exercise tests for EIB and E-ILO. The exercise test for EIB was performed while breathing dry air; a positive test was defined as a decrease ≥10% in FEV1 from baseline. E-ILO was investigated using continuous laryngoscopy during exercise. Health related quality of life (HRQoL), and objectively measured daily physical activity were investigated in those with (n=49) and without (n=91) a positive EIB-test. Results: The prevalence of exercise-induced dyspnoea was 14%, and the estimated prevalence of EIB and E-ILO in the total population was 19.2% and of 5.7%, respectively, with no gender differences. In adolescents with exercise-induced dyspnoea 40% had EIB, 6% had E-ILO, and 5% had both conditions. An increased baseline level of fraction of nitric oxide in exhaled air (FeNO), female gender, and exercise-induced dyspnoea were associated with a positive EIB test. Female adolescents with EIB had lower HRQoL and lower baseline lung function compared to females without EIB. These differences were not observed in male adolescents. There was no difference in time spent in moderate- to vigorous daily physical activity between adolescents with and without EIB.

Adolescents with cystic fibrosis (CF) face unique stressors that require effective coping strategies. Although research suggests that coping may be an important moderator of adjustment to stress, previous studies have utilized generic coping measures that are not specific to the disease or context. Using the Role-Play Inventory of Situations and Coping Strategies (RISCS), a context-specific coping measure for adolescents with CF, the current study examined whether coping efficacy moderated the relationship between disease-related stress and health-related quality of life. Additionally, this study investigated the impact of two family-based behavioral interventions on adolescents’ coping skills: Behavioral Family Systems Therapy (BFST) and the Family Education Program (FEP). Although no direct effects of coping on HRQOL at baseline were found, resulted showed that effective coping buffered the negative effects of disease severity and stressor frequency on HRQOL in several domains. In addition, some evidence indicated that at the most severe end of the severity continuum, there may be thresholds at which effective coping strategies no longer exert their beneficial effects. Longitudinal models revealed that improvements in coping skills were associated with positive changes in HRQOL in different domains, depending upon treatment group. These findings highlighted the utility of using context-specific, sensitive coping measures when examining the moderating effects of coping, and the importance of identifying adolescents with poor coping skills and providing tailored interventions.

Class of 2016 Abstract / Objectives: To compare health-related quality of life (HRQoL) among stroke survivors by gender and race/ethnicity to identify gender and racial/ethnic disparities. Methods: This study adopted a retrospective cross-sectional research design utilizing data from the 2013 Behavioral Risk Factor Surveillance System (BRFSS), a state-based telephone survey administered to noninstitutionalized United States citizens. Inclusion criteria for this project were adults aged 50 or older who: participated in the 2013 BRFSS survey; indicated they had ever been told by a provider that they had experienced a stroke (of any type); and reported data on seven questions aimed to assess HRQoL (general, physical, and mental health; life satisfaction; emotional support; activity limitations; and sleep quality). Chi square tests and logistic regression models were used to compare HRQoL responses by gender and race/ethnicity. Results: In the 2013 BRFSS database 20,391 of 491,773 respondents reported experiencing stroke. Of those, 16,561 met the inclusion criteria. The majority were female (61.1%) and identified their race/ethnicity as white (78.6%). Logistic regression analysis revealed females were more likely than males to report worse outcomes across the following three HRQoL domains: activity limitations (AOR=0.752, 95% CI 0.617-0.918); mental health (AOR=1.398, 95% CI: 1.110-1.761); and general health (AOR=0.764, 95% CI: 0.588-0.993). Minority populations (African American, Hispanic, and Other) were more likely to report activity limitations (AOR=0.766, 95%CI: 0.614-0.955) and fair/poor general health (AOR=1.837, 95%CI: 1.324-2.549). Conclusions: Analysis identified gender and racial/ethnic disparities in HRQoL indicators among stroke survivors. Females and minority populations were more likely to report poorer outcomes.