The experience of living with age related macular degeneration:A longitudinal study into the impact of age related macular degeneration on quality of life

In this thesis I contribute to the understanding of the experience of living with Age-Related Macular Degeneration (AMD) and its impact on quality of life through the use of a pragmatically guided mixed methods approach. AMD is a condition resulting in the loss of central vision in old age which can have a huge impact on the lives of patients. This thesis includes: literature reviewing; qualitative meta-synthesis; surveys and descriptive statistics; observation; and analysis of in-depth interviewing, in order to build a picture of what it is like for older people to live with AMD. I present the findings from six separate studies each designed to answer specific research questions. I begin with a mixed methods study to determine how well the most commonly used measure of quality of life for AMD patients’ represents patient experiences. I then go on to investigate the experiences of patients with AMD through a meta-synthesis of qualitative research and finally present four of my own empirical studies three of which investigate the experiences of patients with different types of AMD: early dry AMD, treatable wet AMD and advanced wet AMD and the final study investigates what it is like for a couple living together with AMD. Throughout the qualitative studies I use Interpretative Phenomenological Analysis (IPA) to develop an understanding of the experiences and life contexts of patients with AMD. Through rigorous analysis, I identify a range of themes which highlight the shared and divergent experiences of individuals with AMD and the need to acknowledge patients’ past, present and potential future life contexts and experiences when providing services to older people with AMD. I relate the findings of the six studies to the wider psychological literature on chronic illness and make recommendations for services for patients with AMD to be provided holistically within a lifeworld-led health care model.

Quality of life instruments in studies of menorrhagia: a systematic review

BACKGROUND: The use of quality of life (QoL) instruments in menorrhagia research is increasing but there is concern that not enough emphasis is placed on patient-focus in these measurements, i.e. on issues which are of importance to patients and reflect their experiences and concerns (clinical face validity). The objective was to assess the quality of QoL instruments in studies of menorrhagia. STUDY DESIGN: A systematic review of published research. Papers were identified through MEDLINE (1966-April 2000), EMBASE (1980-April 2000), Science Citation Index (1981-April 2000), Social Science Citation Index (1981-April 2000), CINAHL (1982-1999) and PsychLIT (1966-1999), and by manual searching of bibliographies of known primary and review articles. Studies were selected if they assessed women with menorrhagia for life quality, either developing QoL instruments or applying them as an outcome measure. Selected studies were assessed for quality of their QoL instruments, using a 17 items checklist including 10 items for clinical face validity (issues of relevance to patients' expectations and concerns) and 7 items for measurement properties (such as reliability, responsiveness, etc.). RESULTS: A total of 19 articles, 8 on instrument development and 11 on application, were included in the review. The generic Short Form 36 Health Survey Questionnaire (SF36) was used in 12/19 (63%) studies. Only two studies developed new specific QoL instruments for menorrhagia but they complied with 7/17 (41%) and 10/17 (59%) of the quality criteria. Quality assessment showed that only 7/19 (37%) studies complied with more than half the criteria for face validity whereas 17/19 (90%) studies complied with more than half of the criteria for measurement properties (P = 0.0001). CONCLUSION: Among existing QoL instruments, there is good compliance with the quality criteria for measurement properties but not with those for clinical face validity. There is a need to develop methodologically sound disease specific QoL instruments in menorrhagia focussing both on face validity and measurement properties.

Development and psychometric tests of the Chinese-version low vision quality of life questionnaire

Background/Aims: To develop and assess the psychometric validity of a Chinese language Vision Health related quality-of-life (VRQoL) measurement instrument for the Chinese visually impaired. Methods: The Low Vision Quality of Life Questionnaire (LVQOL) was translated and adapted into the Chinese-version Low Vision Quality of Life Questionnaire (CLVQOL). The CLVQOL was completed by 100 randomly selected people with low vision (primary group) and 100 people with normal vision (control group). Ninety-four participants from the primary group completed the CLVQOL a second time 2 weeks later (test-retest group). The internal consistency reliability, test-retest reliability, item-internal consistency, item-discrimination validity, construct validity and discriminatory power of the CLVQOL were calculated. Results: The review committee agreed that the CLVQOL replicated the meaning of the LVQOL and was sensitive to cultural differences. The Cronbach's α coefficient and the split-half coefficient for the four scales and total CLVQOL scales were 0.75-0.97. The test-retest reliability as estimated by the intraclass correlations coefficient was 0.69-0.95. Item-internal consistency was >0.4 and item-discrimination validity was generally <0.40. The Varimax rotation factor analysis of the CLVQOL identified four principal factors. the quality-of-life rating of four subscales and the total score of the CLVQOL of the primary group were lower than those of the Control group, both in hospital-based subjects and community-based subjects. Conclusion: The CLVQOL Chinese is a culturally specific vision-related quality-of-life measure instrument. It satisfies conventional psychometric criteria, discriminates visually healthy populations from low vision patients and may be valuable in screening the local community as well as for use in clinical practice or research. © Springer 2005.

Ethnic differences in health related quality of life for patients with type 2 diabetes

Background - The objective of this study was to investigate the association between ethnicity and health related quality of life (HRQoL) in patients with type 2 diabetes. Methods - The EuroQol EQ-5D measure was administered to 1,978 patients with type 2 diabetes in the UK Asian Diabetes Study (UKADS): 1,486 of south Asian origin (Indian, Pakistani, Bangladeshi or other south Asian) and 492 of white European origin. Multivariate regression using ordinary least square (OLS), Tobit, fractional logit and Censored Least Absolutes Deviations estimators was used to estimate the impact of ethnicity on both visual analogue scale (VAS) and utility scores for the EuroQol EQ-5D. Results - Mean EQ-5D VAS and utility scores were lower among south Asians with diabetes compared to the white European population; the unadjusted effect on the mean EQ-5D VAS score was −7.82 (Standard error [SE] = 1.06, p < 0.01) and on the EQ-5D utility score was −0.06 (SE = 0.02, p < 0.01) (OLS estimator). After controlling for socio-demographic and clinical confounders, the adjusted effect on the EQ-5D VAS score was −9.35 (SE = 2.46, p < 0.01) and on the EQ-5D utility score was 0.06 (SE = 0.04), although the latter was not statistically significant. Conclusions - There was a large and statistically significant association between south Asian ethnicity and lower EQ-5D VAS scores. In contrast, there was no significant difference in EQ-5D utility scores between the south Asian and white European sub-groups. Further research is needed to explain the differences in effects on subjective EQ-5D VAS scores and population-weighted EQ-5D utility scores in this context.

Parental self-efficacy in managing food allergy and mental health predicts food allergy related quality of life

BACKGROUND: Food allergy has been shown to have a significant impact on quality of life (QoL) and can be difficult to manage in order to avoid potentially life threatening reactions. Parental self-efficacy (confidence) in managing food allergy for their child might explain variations in QoL. This study aimed to examine whether self-efficacy in parents of food allergic children was a good predictor of QoL of the family. METHODS: Parents of children with clinically diagnosed food allergy completed the Food Allergy Self-Efficacy Scale for Parents (FASE-P), the Food Allergy Quality of Life Parental Burden Scale (FAQL-PB), the GHQ-12 (to measure mental health) and the Food Allergy Independent Measure (FAIM), which measures perceived likelihood of a severe allergic reaction. RESULTS: A total of 434 parents took part. Greater parental QoL was significantly related to greater self-efficacy for food allergy management, better mental health, lower perceived likelihood of a severe reaction, older age in parent and child and fewer number of allergies (all p<0.05). Food allergy self-efficacy explained more of the variance in QoL than any other variable and self-efficacy related to management of social activities and precaution and prevention of an allergic reaction appeared to be the most important aspects. CONCLUSIONS: Parental self-efficacy in management of a child's food allergy is important and is associated with better parental QoL. It would be useful to measure self-efficacy at visits to allergy clinic in order to focus support; interventions to improve self-efficacy in parents of food allergic children should be explored. This article is protected by copyright. All rights reserved.

Evaluation of low vision services on the quality of life of individuals with age-related macular degeneration

Background: Age-related macular degeneration (ARMD) is a major cause of irreversible visual loss in the elderly and a significant threat to their quality of life. Although low vision services often improve the functional outcomes of individuals with macular disease, it remains unclear whether or not they have any impact on quality of life. The principal aim of this study was to determine the effect of a hospital-based low vision clinic on the quality of life of individuals with ARMD. Methods: Forty patients with ARMD attended the low vision clinic at Milton Keynes University Hospital. Quality of life was measured with the vision-specific Low Vision Quality of Life (LVQOL) questionnaire and the general health EuroQol (EQ-5D-5L) questionnaire. Measures were completed at baseline (time zero, T0), and at three- (T3) and six-month (T6) follow-up visits. Results: The near visual acuity of individuals attending the low vision clinic for the first time improved significantly between visits T0 and T3 (p=0.005), reflecting the practiced use of their newly-dispensed low vision aids. As expected, there was no significant change in near acuity over this time period for existing patients. For both new and existing patients, a significant increase in LVQOL score was evident between visits T0 and T3, with a further significant improvement between T3 and T6. Similarly, there was a significant decrease in EQ-5D-5L questionnaire scores between visits T0 and T6. Conclusions: The higher LVQOL scores obtained at the end of the study period (T6) provide evidence that low vision services at Milton Keynes University Hospital served to improve patient quality of life. The reduction in EQ-5D-5L scores over the same time period suggests that low vision services also provide for an improvement in general health-related quality of life. Impact: The findings support the cause of low vision services to improve not only the vision and functional outcomes of individuals with macular disease but also their quality of life. Moreover, the findings suggest that a more efficient allocation of resources at low vision clinics may be possible through the standardisation of patient follow-up frequency.

Preferences of Hungarian consumers for quality, access and price attributes of health care services — result of a discrete choice experiment

In 2010, a household survey was carried out in Hungary among 1037 respondents to study consumer preferences and willingness to pay for health care services. In this paper, we use the data from the discrete choice experiments included in the survey, to elicit the preferences of health care consumers about the choice of health care providers. Regression analysis is used to estimate the effect of the improvement of service attributes (quality, access, and price) on patients’ choice, as well as the differences among the socio-demographic groups. We also estimate the marginal willingness to pay for the improvement in attribute levels by calculating marginal rates of substitution. The results show that respondents from a village or the capital, with low education and bad health status are more driven by the changes in the price attribute when choosing between health care providers. Respondents value the good skills and reputation of the physician and the attitude of the personnel most, followed by modern equipment and maintenance of the office/hospital. Access attributes (travelling and waiting time) are less important. The method of discrete choice experiment is useful to reveal patients’ preferences, and might support the development of an evidence-based and sustainable health policy on patient payments.

Managerial work roles of health care executives in the changing environment of academic medical centers

The current U.S. health care system faces numerous environmental challenges. To compete and survive, health care organizations are developing strategies to lower costs and increase efficiency and quality. All of these strategies require rapid and precise decision making by top level managers. The purpose of this study is to determine the relationship between the environment, made up of unfavorable market conditions and limited resources, and the work roles of top level managers, specifically in the settings of academic medical centers. Managerial work roles are based on the ten work roles developed by Henry Mintzberg, in his book, The Nature of Managerial Work (1973). ^ This research utilized an integrated conceptual framework made up of systems theory in conjunction with role, attribution and contingency theories to illustrate that four most frequently performed Mintzberg's work roles are affected by the two environment dimensions. The study sample consisted of 108 chief executive officers in academic medical centers throughout the United States. The methods included qualitative methods in the form of key informants and case studies and quantitative in the form of a survey questionnaire. Research analysis involved descriptive statistics, reliability tests, correlation, principal component and multivariate analyses. ^ Results indicated that under the market condition of increased revenue based on capitation, the work roles increased. In addition, under the environment dimension of limited resources, the work roles increased when uncompensated care increased while Medicare and non-government funding decreased. ^ Based on these results, a typology of health care managers in academic medical centers was created. Managers could be typed as a strategy-formulator, relationship-builder or task delegator. Therefore, managers who ascertained their types would be able to use this knowledge to build their strengths and develop their weaknesses. Furthermore, organizations could use the typology to identify appropriate roles and responsibilities of managers for their specific needs. Consequently, this research is a valuable tool for understanding health care managerial behaviors that lead to improved decision making. At the same time, this could enhance satisfaction and performance and enable organizations to gain the competitive edge . ^

The effect of a breakfast program on nutritional status, quality of life, and health care use among frail homebound older adults

The population of older adults is rapidly increasing, creating a need for community services that assist vulnerable older adults in maintaining independence and quality of life. Recent evidence confirms the importance of food and nutrition in reaching this objective. The Elderly Nutrition Program (ENP) is part of a system of federally funded community based programs, authorized through the Older Americans Act. ENP services include the home-delivered meals program, which targets frail homebound older adults at nutritional risk. Traditionally, ENP services provide a noon meal 5 days/week. This study evaluated the impact of expanding the home-delivered meals service to include breakfast + lunch, on the nutritional status, quality of life and health care utilization of program participants. ^ This cross-sectional study compared 2 groups. The Breakfast group (n = 167) received a home-delivered breakfast + lunch, 5 days/week. The Comparison group (n = 214) received lunch 5 days/week. Participants, recruited from 5 ENP programs, formed a geographically, racially/ethnically diverse sample. Participants ranged in age from 60–100 years, they were functionally limited, at high nutritional risk, low income, and they lived alone and had difficulty shopping or preparing food. Participant data were collected through in-home interviews and program records. A 24-hour food recall and information on participant demographics, malnutrition risk, functional status, health care use, and applicable quality of life factors were obtained. Service and cost data were collected from program administrators. ^ Breakfast group participants had greater energy/nutrient intakes (p < .05), fewer health care contacts (p < .05), and greater quality of life measured as food security (p < .05) and fewer depressive symptoms (p < .05), than comparison group participants. These benefits were achieved for $1.30/person/day. ^ The study identified links from improvements in nutritional status to enhanced quality of life to diminished health care utilization and expenditures. A model of health, loneliness, food enjoyment, food insecurity, and depression as factors contributing to quality of life for this population, was proposed and tested (p < .01). ^ The breakfast service is an inexpensive addition to traditional home-delivered meals services and can improve the lives of frail homebound older adults. Agencies should be encouraged to expand meals programs to include a breakfast service. ^

A Case Study of Health Tourism in the Jeju Province, South Korea

The United States Census Bureau (2006) reported that in 2005 more than 46 million Americans lacked health insurance, and that by 2019 national spending for health care would exceed $4.5 trillion (Centers for Medicare & Medicaid Services, 2010). Because those numbers are expected to increase, health tourists are seeking better opportunities for low-cost, high-quality treatment in other countries, plus the added benefit of experiencing foreign cultures. Health tourism is a rapidly growing market in both advanced and developing countries. The purpose of this study was to develop an applicable model of health tourism, the Jeju-Style Health Tourism Model, for Jeju Special Self-Governing Province, in the Republic of Korea (South Korea) and to provide other cities and countries with its implications. This study employed a focus group, indepth interviews, and content analysis to discover important factors in developing the model. The results suggested that four major sources must be executed together to maximize the benefits of health tourism development. On a foundation of natural resources, knowledge-based resources were most important (54.5%), followed by artificial resources (25.7%), and expenses-based resources (19.8%).

Impact on quality of life of removable partial denture wearers after 2 years of use

The use of clinical indicators of satisfaction (OHIP) can be applied to evaluate the impact of denture use on patient quality of life, since dental problems and disorders interfere in the normal life of individuals. Aim: This study aimed at evaluating the satisfaction level of patients rehabilitated with removable partial dentures (RPD) after 2 years of use. Methods: An observational study was carried out on 28 patients with a mean age of 45 years, treated with RPD at the Department of Dentistry of the Federal University of Rio Grande do Norte in 2005. Patients signed informed consent and answered the Oral Health Impact Profile (OHIP) questionnaire on three occasions: prior to rehabilitation and at 3 months and 2 years of denture use. Repeated-measures ANOVA was applied for data analysis. Results: A difference was found between data obtained at the moment of fitting and three months after denture use (p<0.001). However, no variation was observed when comparing data from 3 months and 2 years of use (p>0.05). The variables of gender and age did not interfere in the result (p>0.05). Conclusions: The degree of patient satisfaction after RPD installation was significant at the moment of fitting and 3 months after denture use, but no significant difference was found between 3 months and 2 years of denture use.

Impact on quality of life of removable partial denture wearers after 2 years of use

The use of clinical indicators of satisfaction (OHIP) can be applied to evaluate the impact of denture use on patient quality of life, since dental problems and disorders interfere in the normal life of individuals. Aim: This study aimed at evaluating the satisfaction level of patients rehabilitated with removable partial dentures (RPD) after 2 years of use. Methods: An observational study was carried out on 28 patients with a mean age of 45 years, treated with RPD at the Department of Dentistry of the Federal University of Rio Grande do Norte in 2005. Patients signed informed consent and answered the Oral Health Impact Profile (OHIP) questionnaire on three occasions: prior to rehabilitation and at 3 months and 2 years of denture use. Repeated-measures ANOVA was applied for data analysis. Results: A difference was found between data obtained at the moment of fitting and three months after denture use (p<0.001). However, no variation was observed when comparing data from 3 months and 2 years of use (p>0.05). The variables of gender and age did not interfere in the result (p>0.05). Conclusions: The degree of patient satisfaction after RPD installation was significant at the moment of fitting and 3 months after denture use, but no significant difference was found between 3 months and 2 years of denture use.

The Influence of Household Economic Status and Food Consumption Patterns on Obesity Rates in Peru – Evidence from a Field Study in 11 Communities of Madre de Dios

The globalization contributes to rapid economic developments and great changes of lifestyle in Madre de Dios of Peru, both of which have influenced the health status of local people in direct and indirect ways. The high overweight and obesity rate has become one of the biggest health challenges in this region. This study quantitatively analyzed the impact of household economic status and food consumption patterns on overweight and obesity, and tried to establish their relationship with local economic activities. People living in mining communities are more likely to be overweight or obese. Increased family incomes and lacks of health knowledge are two important reasons. The large consumption of soda and alcohol are positively associated with overweight and obesity. In addition, lack of physical activities is also one of the risk factors of overweight and obesity.

Beyond maternal death: improving the quality of maternal care through national studies of ‘near-miss’ maternal morbidity

Knight M, Acosta C, Brocklehurst P, Cheshire A, Fitzpatrick K, Hinton L, Jokinen M, Kemp B, Kurinczuk JJ, Lewis G, Lindquist A, Locock L, Nair M, Patel N, Quigley M, Ridge D, Rivero-Arias O, Sellers S, Shah A on behalf of the UKNeS coapplicant group. Background Studies of maternal mortality have been shown to result in important improvements to women’s health. It is now recognised that in countries such as the UK, where maternal deaths are rare, the study of near-miss severe maternal morbidity provides additional information to aid disease prevention, treatment and service provision. Objectives To (1) estimate the incidence of specific near-miss morbidities; (2) assess the contribution of existing risk factors to incidence; (3) describe different interventions and their impact on outcomes and costs; (4) identify any groups in which outcomes differ; (5) investigate factors associated with maternal death; (6) compare an external confidential enquiry or a local review approach for investigating quality of care for affected women; and (7) assess the longer-term impacts. Methods Mixed quantitative and qualitative methods including primary national observational studies, database analyses, surveys and case studies overseen by a user advisory group. Setting Maternity units in all four countries of the UK. Participants Women with near-miss maternal morbidities, their partners and comparison women without severe morbidity. Main outcome measures The incidence, risk factors, management and outcomes of uterine rupture, placenta accreta, haemolysis, elevated liver enzymes and low platelets (HELLP) syndrome, severe sepsis, amniotic fluid embolism and pregnancy at advanced maternal age (≥ 48 years at completion of pregnancy); factors associated with progression from severe morbidity to death; associations between severe maternal morbidity and ethnicity and socioeconomic status; lessons for care identified by local and external review; economic evaluation of interventions for management of postpartum haemorrhage (PPH); women’s experiences of near-miss maternal morbidity; long-term outcomes; and models of maternity care commissioned through experience-led and standard approaches. Results Women and their partners reported long-term impacts of near-miss maternal morbidities on their physical and mental health. Older maternal age and caesarean delivery are associated with severe maternal morbidity in both current and future pregnancies. Antibiotic prescription for pregnant or postpartum women with suspected infection does not necessarily prevent progression to severe sepsis, which may be rapidly progressive. Delay in delivery, of up to 48 hours, may be safely undertaken in women with HELLP syndrome in whom there is no fetal compromise. Uterine compression sutures are a cost-effective second-line therapy for PPH. Medical comorbidities are associated with a fivefold increase in the odds of maternal death from direct pregnancy complications. External reviews identified more specific clinical messages for care than local reviews. Experience-led commissioning may be used as a way to commission maternity services. Limitations This programme used observational studies, some with limited sample size, and the possibility of uncontrolled confounding cannot be excluded. Conclusions Implementation of the findings of this research could prevent both future severe pregnancy complications as well as improving the outcome of pregnancy for women. One of the clearest findings relates to the population of women with other medical and mental health problems in pregnancy and their risk of severe morbidity. Further research into models of pre-pregnancy, pregnancy and postnatal care is clearly needed.

Commodification of health care systems: The Catalan case

Commodification of the public healthcare system has been a growing process in recent decades, especially in universal healthcare systems and in high-income countries like Spain.  There are substantial differences in the healthcare systems of each autonomous region of Spain, among which Catalonia is characterized by having a mixed healthcare system with complex partnerships and interactions between the public and private healthcare sectors.  Using a narrative review approach, this article addresses various aspects of the Catalan healthcare system, characterizing the privatization and commodification of health processes in Catalonia from a historical perspective with particular attention to recent legislative changes and austerity measures.  The article approximates, the eventual effects that commodification and austerity measures will have on the health of the population and on the structure, accessibility, effectiveness, equity and quality of healthcare services.