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.

Background: Disease-specific patient-based questionnaires are being used increasingly to evaluate treatment outcomes in coronary heart disease (CHD) from the patient's perspective. However, most have been developed to evaluate health-related quality of life (HRQoL) in medically rather than surgically treated patients and many have not been rigorously evaluated against required standards. There are currently no validated questionnaires to measure patient- based outcomes after coronary revascularisation, the surgical treatment for CHD. Objectives: To develop a new patient-based instrument, the Coronary Revascularisation Outcome Questionnaire (CROQ), to measure health outcomes and HRQoL before and after coronary artery bypass graft surgery (CABG) and percutaneous transluminal coronary angioplasty (PTCA). To evaluate the psychometric properties of the CROQ using classical psychometric methods. Design: Psychometric study. Subjects: A total of 725 (79% male) patients undergoing CABG and 643 (71% male) patients undergoing PTCA at three hospitals in the UK. Methods: Qualitative methods (literature review, review of existing instruments, patient interviews, and expert opinion) were used to develop two versions of the eROQ (CROQ-CABG and CROQ-PTCA). Two field tests were then conducted by postal survey to patients before and 3-months after revascularisation firstly, to identify possible items for elimination (item reduction) and secondly, to evaluate the psychometric properties (reliability, validity, responsiveness) of the item- reduced CROa in independent samples. Results: The CROQ was acceptable to patients, satisfied tests of scaling assumptions, showed good internal consistency, test-retest reliability, validity, and responsiveness. 4 Conclusions: The CROQ is a new l psychometrically rigorous patient-based measure of outcome for coronary revascularisation. The CROQ has many potential uses in evaluative research l such as in clinical trials of effectiveness I and as a routine clinical audit tool to assist providers of CABG and PTCA in monitoring the outcomes of care

Arthritis is a growing aging and public health concern in Canada and elsewhere. As with many other chronic health conditions, arthritis occurs more often and has a higher impact on functioning for people who have lower incomes or live in an impoverished environment. There is a large body of research that supports a gradient between socioeconomic status and health and between area level poverty and decreased quality of life. Although this relationship is widely acknowledged, less is known about the influence of broader social conditions at the neighbourhood level on health outcomes. By examining quality of life from the theoretical framework of poverty as a fundamental cause of differences in health (Link & Phelan, 1995) and Bourdieu’s (1984) theory of habitus, I provide an analysis of the direct impact of material and social deprivation on health related quality of life (HRQoL), as well as the impact considering the influence of age, body weight, physical functioning, gender, and coexisting health conditions. I also examine interaction effects between neighbourhood deprivation and individual characteristics. An explanatory three-level multilevel model supported a relationship between individual factors as well as deprivation at the neighbourhood level on quality of life. The impact of neighbourhood deprivation was more pronounced for mental health related life quality, with a history of another health condition making the largest contribution to the model. Physical HRQoL was impacted by gender in interaction with material deprivation and body mass index in interaction with social deprivation. I discuss implications for practice, service delivery, and policy and make suggestions for further research. / May 2016

ABSTRACT Introduction The advent of potent anti-retroviral agents for HIV treatment has resulted in marked decrease in deaths. Health workers now have to ensure that their patient’s physical, social, and psychological well-being is optimized. This study used a validated tool to measure Health Related Quality of Life concepts amongst HIV patients in a public treatment program. The main objective of this research was to establish factors that are associated with poor quality of life of these patients with the purpose of using this information as a basis for determining who would require individualized medical care and attention. Materials and methods The study is set at Bontleng Clinic in Gaborone, Botswana. The study questionnaire consisted of two parts: part one for collecting data on sociodemographic, illness and treatment related factors, and part two was the Medical Outcomes Study – Short Form tool used to obtain data on quality of life concepts. Two groups of participants were interviewed: ART-Naïve (n=90) and ARTExperienced (n=110). The study protocol had ethical approval from both the University of the Witwatersrand, Johannesburg and the Ministry of Health in Botswana. iv Results A smaller proportion of ART-experienced participants reported various disease symptoms as compared to those participants who were ART-naïve. Statistically significant differences were noted for: weight loss (25% vs 77%), diarrhoea (3% vs 11%), cough (19% vs 39%), and night sweats (24% vs 43%) for ART experienced and ART Naïve patients respectively. CD4 counts and HB levels were also significantly higher in patients on HAART. The overall QoL summary score was significantly higher (better) in the ART-experienced (mean score 53 out of 100) compared to the ART-naïve group (mean score 47 out of 100). Therefore being on ART favoured a higher QoL score. However, changes in the three laboratory indices of CD4 count, Hb level, and viral load had no statistical significant association with HRQoL scores. Multiple regression identified only five factors as being associated with better QoL scores. These factors were to do with the absence of the following disease symptoms: weight loss, diarrhoea, night sweats, and feet pains; as well as absence of recent hospitalisation. Discussion The study patients do respond well to HAART with significant improvements in all dimensions of QoL. This is in keeping with findings from other populations. In assessing these patients at the initiation of HAART, and at subsequent visits, one must take into account any history of recent hospital admission, history of weight loss, and most importantly presence/absence of various disease symptoms. Conclusions and recommendations Symptoms, regardless of the underlying cause: be it due to HIV disease itself or drug side effects; greatly impact patients’ quality of life. Efforts should be made to include the assessment of symptoms in the continuum of care of HIV patients. The introduction of newer potent anti-retroviral agents with fewer side effects should also favour the beneficial impact of HAART.

<p>The aim of the literature review was to describe how persons living with HIV experience their health-related quality of life, and which coping strategies they use. Scientific articles were searched in the databases Pubmed and Cinahl. The keywords used were HIV, nursing, health-related quality of life and coping. A total of 18 articles were included in the study. The main result of the literature review showed that persons living with HIV have lower health-related quality of life than healthy individuals. Variables that affected the health-related quality of life were gender, age, symptom experience, antiretroviral treatment, self-care/coping and circumstances of life. Use of both problem-oriented coping strategies and emotion-oriented coping strategies were identified in persons living with HIV. Problem-oriented coping strategies contained lifestyle changes, social support and knowledge. Emotion-oriented coping strategies contained spirituality and avoiding behavior. In conclusion, this literature review showed that it is important for the general nurse to understand the situation persons living with HIV are going through and provide support. This support should be individually accommodated, but could for example consist of education, social support,<strong> </strong>satisfying spiritual needs and encouraging lifestyle changes.</p>

The aim of the literature review was to describe how persons living with HIV experience their health-related quality of life, and which coping strategies they use. Scientific articles were searched in the databases Pubmed and Cinahl. The keywords used were HIV, nursing, health-related quality of life and coping. A total of 18 articles were included in the study. The main result of the literature review showed that persons living with HIV have lower health-related quality of life than healthy individuals. Variables that affected the health-related quality of life were gender, age, symptom experience, antiretroviral treatment, self-care/coping and circumstances of life. Use of both problem-oriented coping strategies and emotion-oriented coping strategies were identified in persons living with HIV. Problem-oriented coping strategies contained lifestyle changes, social support and knowledge. Emotion-oriented coping strategies contained spirituality and avoiding behavior. In conclusion, this literature review showed that it is important for the general nurse to understand the situation persons living with HIV are going through and provide support. This support should be individually accommodated, but could for example consist of education, social support, satisfying spiritual needs and encouraging lifestyle changes.

Attention-Deficit/Hyperactivity Disorder (ADHD) is one of the most prevalent chronic disorders in childhood. The measurement of health-related quality of life (HRQOL) can compliment ADHD behavior rating scales and provide a more comprehensive understanding of the impact of ADHD and its treatment on the child's overall daily functioning and well-being. The purpose of the current study was to assess HRQOL from the perspective of pediatric patient self-report and parent proxy-report and family impact from the perspective of parents in children with ADHD ages 5 to 18 years being seen at a Pediatric Psychiatric Clinic utilizing the PedsQL(TM) 4.0 Generic Core Scales and Family Impact Module. For all PedsQL(TM) 4.0 Generic Core Scales, pediatric patients with ADHD and their parents reported statistically significant worse HRQOL than healthy children, with large effect sizes across all domains. More impaired generic HRQOL was significantly correlated with more severe ADHD symptoms as measured by the NICHQ Vanderbilt Total ADHD Symptom Score for parent proxy-report but not child self-report. More impaired family functioning was significantly correlated with more severe ADHD symptoms. Intraclass Correlations (ICC) between pediatric patient self-report and parent proxy-report across the PedsQL(TM) 4.0 Generic Core Scales were in the poor to fair agreement range. These findings have implications for future research and clinical practice with pediatric patients with ADHD and co-morbid psychiatric conditions and their families. Given the large effect sizes reported between the present sample and healthy children across all HRQOL domains, it is important that interventions designed for children with ADHD and co-morbid psychiatric conditions not only address psychosocial difficulties, but also the physical impairments that may result from medications and/or co-morbid psychiatric diagnoses such as anxiety or depression. Given our finding that greater ADHD symptomatology was significantly associated with greater negative family impact, interventions for this population should focus on mitigating the negative impact of ADHD and co-morbid psychiatric conditions on families, particularly related to the areas of parental worry, family relationships, and daily family activities.

This dissertation consists of four papers aimed at understanding the complex relationship between employment and health. One paper is a systematic review of the return to work literature, while the other three papers used secondary data from three cohorts of people with HIV to examine the association between employment and health-related quality of life. The systematic review looked at longitudinal studies that reported health outcomes associated with return to work in relation to other employment trajectories. This review supported the beneficial effect of return to work on health in a variety of populations, times, and settings, and also found evidence that poor health interferes with the prospects of returning to work. Two other papers looked at the association between employment and health-related quality of life in people with HIV; one paper used a cross-sectional sample of people with HIV, while the other paper used a longitudinal sample of men who have sex with men. These two studies found evidence to support the association between employment and both physical and mental health-related quality of life. They also found that employment had a stronger relationship with physical than mental health, suggesting an adaptation process to the experience of unemployment. Finally, another paper examined the cross-sectional association between job security and quality of life in men and women living with HIV. This study found that job security offered additional mental health quality of life benefits, over and above participation in employment alone, for men living with HIV. On the other hand, women benefited from the availability of work, but the perception of job security failed to offer additional health benefits. The current level of evidence on the relationship between work and health in HIV needs to be strengthened by further research to develop and support practical clinical and policy recommendations.

This dissertation consists of four papers aimed at understanding the complex relationship between employment and health. One paper is a systematic review of the return to work literature, while the other three papers used secondary data from three cohorts of people with HIV to examine the association between employment and health-related quality of life. The systematic review looked at longitudinal studies that reported health outcomes associated with return to work in relation to other employment trajectories. This review supported the beneficial effect of return to work on health in a variety of populations, times, and settings, and also found evidence that poor health interferes with the prospects of returning to work. Two other papers looked at the association between employment and health-related quality of life in people with HIV; one paper used a cross-sectional sample of people with HIV, while the other paper used a longitudinal sample of men who have sex with men. These two studies found evidence to support the association between employment and both physical and mental health-related quality of life. They also found that employment had a stronger relationship with physical than mental health, suggesting an adaptation process to the experience of unemployment. Finally, another paper examined the cross-sectional association between job security and quality of life in men and women living with HIV. This study found that job security offered additional mental health quality of life benefits, over and above participation in employment alone, for men living with HIV. On the other hand, women benefited from the availability of work, but the perception of job security failed to offer additional health benefits. The current level of evidence on the relationship between work and health in HIV needs to be strengthened by further research to develop and support practical clinical and policy recommendations.

Coronary artery bypass grafting (CABG) is a procedure used to help improve and save the lives of thousands of coronary artery diseased patients every year. Measuring health-related quality of life (HRQL) significantly contributes to understanding patient perceptions of outcomes attributable to this surgery. Previous research on patient outcomes for CABG has included the evaluation of changes in HRQL at intervals of 3-6 mo postsurgery. There is a lack of research, however, that evaluates how physical fitness levels of CABG patients prior to surgery, may affect these HRQL outcomes. The purpose of this study was to develop a prediction equation, using fitness in addition to other combined variables, that predicts HRQL 3 mo after CABG. This study evaluated the influences of prior physical fitness, when these attributes are considered in combination with other clinical variables. Moreover, whether these variables would be possible predictors of health-related quality of life outcomes 3 mo after CABG were evaluated. These variables consisted of heart disease risk factors, physical fitness measures, and whether or not the patients had histories of various comorbid conditions, including that of prior history of myocardial infarction. The HRQL was assessed using the Medical Outcomes Study Short Form 36 (MOS SF-36), and concurrently, questionnaire data were collected with several other patient perceived measures expected to have potential confounding influences on HRQL; the MOS Social Support Scale; Beck Depression Inventory; Health Complaints Scale; the Life Orientation Test for optimism/pessimism. In all, 45 men and 10 women, were evaluated just prior to and 3 mo following CABG. Two of the eight subscales of the MOS SF-36 were predicted at an adjusted R 2 of greater than 50%. The sum of three skinfolds was the only physical fitness measure combined with current smoker, Beck Depression Inventory, presurgical General Health Perception and the Medical Outcomes Study Social Support Scale, that contributed most to predicting General Health Perception (R 2 =.68). Elbow flexion was the only physical fitness variable, combined with four presurgical MOS SF-36 subscales (Mental Health, Role Physical, Social Functioning and General Health Perception) that contributed to predicting the subscale of mental health (R 2 =.61). Physical fitness did contribute to predicting the global scope of health perception and mental health. Physical and social domains of HRQL, however, were not significantly predicted. Presurgical HRQL was most significant when predicting postsurgical HRQL. Therefore, in order to predict postsurgical HRQL, presurgical HRQL should be used. Physical fitness variables can be utilized to contribute to predicting certain aspects of HRQL. / Master of Science