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This dissertation comprises three main chapters, book-ended by an introduction and a concluding chapter. Chapters 2 and 3 examine the impacts of health insurance programs in the Philippines and Indonesia on healthcare utilization, healthcare expenditures, and health outcomes. Chapter 4 then examines the age-related trajectories of health-related quality of life of Canadians with diabetes. In Chapter 2, we examine the impact of the national health insurance program of The Philippines on maternal and health outcomes among poor mothers. We find that the program is associated with greater likelihood of prenatal care visits, facility-based birth delivery, and post-natal care, and the impact is most pronounced among the poorest women, but we do not observe improvements in birthweight. In Chapter 3, we evaluate the impact of Jamkesmas, the largest subsidized health insurance in Indonesia, on healthcare utilization, health outcomes, and healthcare expenditures. We find that Jamkesmas is associated with higher probability of using outpatient care and inpatient care and lower out-of-pocket healthcare expenditures, but no significant impact on catastrophic healthcare expenditures and health outcomes. In Chapter 4, we characterize the age-related-trajectories of health-related quality of life of Canadians with diabetes. We find that women and low-income individuals with diabetes experience a lower health-related quality of life trajectories, but there is no evidence that the rate of deterioration of their health-related quality of life is faster than their counterparts without diabetes. / Dissertation / Doctor of Philosophy (PhD)

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.

Background: Health-related quality of life (HRQL) outcomes have been increasingly used in phase III randomized controlled trials to characterize the benefits or risks of a cancer treatment. HRQL outcomes from clinical trials can also inform clinical practice in oncology settings. Previous qualitative research suggests that oncologists value HRQL outcomes but challenges to their clinical application exist. Little quantitative research has been conducted to examine these barriers. This study describes the opinions of oncologists toward HRQL outcomes, the ways in which HRQL outcomes can be presented, and the importance of suggested reporting standards for HRQL outcomes in clinical trials. It further examines the association between attitudinal and demographic factors associated with the self-reported current use and achievable use of HRQL outcomes in clinical practice. Methods: This study is a cross-sectional survey of oncologists. A web-based questionnaire was disseminated in Canada, United Kingdom, and Australia/New Zealand. The study included oncologist members of the NCIC Clinical Trials Group, the NCRI Clinical Studies Groups, and the Australasian Cancer Clinical Trials Groups. Respondents were asked to report their opinions toward HRQL outcomes and the factors associated with the use of these outcomes in clinical practice. Demographic characteristics were also collected. Chi-square tests were used to compare the proportion of responses between countries. Logistic regression was used to identify factors associated with the use of HRQL outcomes in clinical practice. Results: A total of 344 oncologists completed the survey. Most oncologists (65.9%) reported having a good knowledge of HRQL outcomes and 72% perceived HRQL outcomes to be useful. High current use of HRQL outcomes in clinical practice was associated with more medical practice experience; perceiving HRQL outcomes to be useful; perceiving HRQL measurements to be reliable; and reporting lack of understanding to rarely be a barrier to using HRQL outcomes. High achievable use of HRQL outcomes in clinical practice was associated with being a male oncologist, perceiving HRQL outcomes to be useful, and being an investigator in RCTs. Conclusions: Important factors associated with the use of HRQL outcomes in clinical practice were identified, highlighting the need for future research and education. / Thesis (Master, Community Health & Epidemiology) -- Queen's University, 2013-09-30 12:56:09.362

In a 9-month prospective study, sleep and daytime functioning were compared in a community sample of 86 participants aged 25-50 years: 43 meeting DSM IV criteria for primary insomnia (26 women & 17 men); and 43 controls (32 women & 11 men). Assessments were conducted at baseline, 4 and 8 months, and included: the Pittsburgh Sleep Quality Index; Spielberger StatefTrait Anxiety Inventory; Eysenck Personality Questionnaire, Beck Depression Inventory; Fatigue Severity Scale; SF-36; Epworth Sleepiness Scale; Dysfunctional Beliefs About Sleep Scale; Sleep Hygiene and Practices Scale, Sleep Disturbance Questionnaire and the Psychomotor Vigilance Task PVT. An instrument to assess the occupational consequences of insomnia (the Occupational Impact of Sleep Questionnaire; OISQ) was also developed in the course of the study. PWI versus control group comparisons were made with repeated measures multivariate ANOVAs. Differences were consistently and significantly maintained on measures of state (F = 15.85 P <0.001) and trait anxiety (F = 23.46; P < 0.001), depression (F = 18.37; P < 0.001), fatigue (F = 22.20; P < 0.001), and neuroticism (F = 11.09; P < 0.001). Among PWI, mental health (F = 14.04; P < 0.001), pain (F = 6.92; P < 0.001), role-emotion (F = 10.94; p < 0.001), general health perceptions (F = 4.77; P < 0.05), social functioning (F = 6.58; P < 0.01) and energy and vitality (F = 32.08; P < 0.001), on the SF-36, were consistent with inferior health related QoL. In addition, pre-sleep arousal (F = 14.76; P < 0.001), sleep hygiene (F = 35.26; P < 0.001) and sleep disturbance (F = 72.32; P < 0.001) were significantly worse within PWI. Subjectively reported TIB (F = 9.38; P < 0.01), SOL (F = 11.17; P < 0.01) and WASO (F = 21.10; P < 0.001), remained greater within PWI, with SE (F = 15.29; P < 0.001), TST (F = 9.38; P < 0.01) and subjective sleep quality (F = 29.57; P < 0.001) greater within controls. Data averaged over the duration of data collection (252 days) found PWI reported an average SOL >30 minutes, an average WASO of> 30 minutes, SE < 80%. Analysed in terms of night to night sleep quality, both PWI and controls showed a pattern of 'good' (sleep efficiency >80%) and 'poor' (sleep efficiency <80%) nights. However, the probability of individual poor nights remained consistently and significantly higher for PWI across the 9 months of the study. Actigraphy data failed to confirm between group differences in sleep, and correlation with diary measures was low in both groups. PVf performance showed instability. Significant group differences found at baseline, were no longer present at subsequent data collection points. Data support the inconsistency surrounding objective performance among PWI within the literature. However, the inconsistency can be attributed to greater change within control participant's performance, rather than within PWI. Data identified the existence of a stable subgroup of PWI reporting symptoms of daytime sleepiness. Daytime sleepiness was found to be a temporally stable feature for this sub-group of PWI, who also Showed a distinctive psychological profile compared to PWI who did not report daytime sleepiness. No difference, however, was observed in subjectively reported sleep structure, quality or daytime performance between these subgroups of PWI. Insomnia subgroup analyses suggest a trait-like difference between sleepy and non sleepy PWI.The OISO showed an acceptable level of internal consistency reliability (alpha 0.93); and successfully discriminated between PWI and controls. The OISO also showed consistent correlations with measures of global sleep quality and subjective sleep parameters. Expressed in terms of comparative percentage decrement, PWI showed a consistent 10% decrement in subjective occupational performance when compared with controls. The OISO shows that absenteeism and punctuality may not capture the full impact of insomnia on workplace performance.

The extent to which individuals perceive stigma from others and internalize stigmatizing beliefs is increasingly recognized as a contributor to psychological and physical distress. Individuals in poverty may feel increasingly stigmatized as a result of financial hardship; however, little research has examined the linkage of financial stigma to health outcomes, nor the potential underlying explanatory mechanisms of such an association. According to self-determination theory, loss of social capital, which often occurs when a person is stigmatized, may deleteriously affect health outcomes, yet this premise has not been tested. We assessed the incremental impact of sociodemographic characteristics, and experienced and internalized financial stigma, on health-related quality of life (HRQL), as well as the mediating effect of belongingness, in a sample of 100 working, uninsured primary care patients. Results confirmed that experienced and internalized perceived stigma contributed additional variance, over the effects of sociodemographic factors, to poor HRQL, and belongingness was a significant mediator. Financial stigma may increase isolation, reducing opportunities for meaningful social connections, thereby deleteriously impacting mental and physical health outcomes. Therapeutically addressing stigma, and bolstering social connectedness, may improve HRQL in the underserved and impoverished.

Magister Scientiae (Occupational Therapy) - MSc(OT) / Background: One of the most significant current discussions in public health and occupational therapy is the challenges facing adults with chronic diseases. Adults living with chronic diseases experience challenges of activity limitations and occupational disruptions which may influence their health, quality of life and well-being. Chronic diseases seem to have implications for adults’ areas of occupation, client factors and performance patterns as well as performance skills. Spirituality is considered as important in the lives of adults living with chronic diseases as a coping strategy assisting them to deal with the challenges of life in relation to physical, social, emotional and functional well-being. Despite the importance of spirituality in adults with chronic diseases, there is little known about the relationship between spirituality, health-related quality of life and occupational balance among adults with chronic diseases in the Western Cape, South Africa. Aim: The aim of the study was to examine the relationship between spirituality, healthrelated quality of life and occupational balance from the perspectives of adults living with chronic diseases. Methods: A sequential exploratory mixed methods two phase design approach was used for the purpose of the study. Thus, to examine the perspectives and determine the relationship on spirituality, health related quality of life and occupational balance of adults living with chronic diseases. Furthermore, to explore and describe the perceptions of adults with chronic diseases regarding the relationship between spirituality, health related quality of life and occupational balance.

Problem: Many individuals with chronic illnesses such as stroke and ongoing activity limitations report self-perceived health related quality of life (HRQL) that is similar to that of healthy individuals. This phenomenon is termed response shift (RS). RS describes how people change: internal standards in assessing HRQL (recalibration), values (reprioritization), or how they define HRQL (reconceptualization), after an event such as stroke. Changes in HRQL post stroke may be inaccurate if RS is not taken into account. Increased knowledge of RS may affect the way in which HRQL measures are used, both clinically and in research. The overall objective was to assess RS in construct specific HRQL models post stroke: physical function, mental health, and participation. Methods: Data were analysed from the longitudinal study “Understanding Quality of Life Post-Stroke: A Study of Individuals and their Caregivers”. Six-hundred and seventy- eight persons with stroke at 1, 3, 6, and 12 months post stroke participated. Generic and stroke specific HRQL measures were collected. Descriptive analysis was completed with SAS, and identification of RS utilized structural equation modeling with LISREL. Results: Mean age of participants was 67 years (SD 14.8), and 45% were female. RS was identified in mental health using a framework which was developed for identifying RS statistically with multiple time points. RS was also identified in physical function where it had not been expected, possibly due to the self perceived nature of the response options. The effect size of change in physical function was affected by the presence of RS. The timing of RS in mental health and physical function was primarily around the 12 month time period, and predominantly recalibration RS. RS was also identified in participation. Conclusions: The framework that was developed was useful in identifying RS and incorporated important issues such as multiple testing and validation of the model. The presence of RS affects measurement of HRQL constructs post stroke; recalibration RS can be measured clinically with specific methods to account for RS. RS should also be measured in research studies to ensure accurate measurement of change. Future research should evaluate additional models in stroke and other populations. / October 2008

Health-related quality of life (HRQOL) assessment has emerged as a vital health outcome measure in clinical trials, healthcare services and evaluation, and population health outcomes research. Reliability, validity, and parent-child agreement of the PedsQL™ 4.0 Generic Core Scales were examined using child self-report and parent proxy-report age subgroup data on over 8,000 children ages 5-16 years from the PedsQL 4.0 Generic Core Scales DatabaseSM. The PedsQL™ 4.0 Generic Core Scales demonstrated good internal consistency reliability for children as young as 5 years; healthy children across the age subgroups demonstrated a statistically significant difference in HRQOL (better HRQOL) than children with a known chronic health condition. Confirmatory factor analysis demonstrated that a 5-factor model fit almost identically across the age subgroups, providing further evidence that children as young as 5 years are reliable and valid self-reporters of their HRQOL. Parent-child agreement was in the moderate-to-good range, with parents reporting significantly higher PedsQL™ 4.0 scores across the age subgroups. In conclusion, the analyses support the reliability and validity of child self-report in children as young as 5 years old.

This study examines the effects of TYSABRI on the health-related quality of life (HrQoL) outcomes, disease status and symptomatology, treatment satisfaction, productivity outcomes and healthcare utilization for patients with Crohn’s Disease (CD). A total of 241 patients consented to participate in the study, out of which 61 patients qualified for the baseline survey. After three-months of TYSABRI therapy, the follow-up survey was completed by 24 patients. Changes in outcome scores from baseline to the three-month follow-up were evaluated. The 24 patients with the three-month follow-up were, on average 41 years old and 62.5% percent were female. For those with follow-up, a significantly lower proportion of patients (41.7 percent) identified their CD severity as moderate to severe compared to 83.3 percent at baseline (p=0.001). The patients also reported experiencing a significantly lower mean number of CD relapses at follow-up (4.0) compared to baseline (6.8) (p=0.004). Improved median well-being scores (2.0 vs. 1.0; p<0.001) and improved median abdominal pain scores (2.0 vs. 1.0; p=0.001) were also reported at follow-up. The patient global assessment of HrQoL over the last 2 weeks was significantly improved at follow-up (2.0 vs. 3.0; p=0.006). Similar improved results were observed regarding their assessment of the impact of CD on HrQoL (7.0 vs. 5.0; p<0.001). A significant change of 32.0 points on the total Inflammatory Bowel Disease Questionnaire (IBDQ) scale (p<0.001) and significant improvements in each of the four component scales were also seen at follow-up (p≤0.05). Significant improvement was noted on the SF-36 PCS scale (mean change 7.0; p=0.001) and MCS scale (mean change 6.0; p=0.05). Significant improvements were observed in the scores for each of the four scales of the treatment satisfaction questionnaire at follow-up: effectiveness scale (28.6 vs. 63.0; p<0.001); side-effects scale (61.6 vs. 82.2; p=0.01); convenience scale (63.8 vs. 70.8; p=0.05); and global satisfaction scale (41.3 vs. 67.0; p<0.001). A significant decrease in the number of CD-related emergency room (ER) visits was observed between baseline and follow-up (1.3 vs. 0.7; p=0.03). For the productivity outcomes, the percent of planned household work lost due to absenteeism was significantly reduced (73.1 percent vs. 43.9 percent; p=0.02) and the total percent of planned hours lost was also reduced (87.3 percent vs. 64.4 percent; p=0.037). These results indicate that TYSABRI is associated with significant improvement in HrQoL outcomes, CD disease severity, treatment satisfaction, ER visits and productivity outcomes. / text