BACKGROUND Endometriosis is a chronic condition affecting between 2 and 17% of women of reproductive age. Common symptoms are chronic pelvic pain, fatigue, congestive dysmenorrhoea, heavy menstrual bleeding and deep dyspareunia. Studies have demonstrated the considerable negative impact of this condition on women's quality of life (QoL), especially in the domains of pain and psychosocial functioning. The impact of endometriosis is likely to be exacerbated by the absence of an obvious cause and the likelihood of chronic, recurring symptoms. The aims of this paper are to review the current body of knowledge on the social and psychological impact of endometriosis on women's lives; to provide insights into women's experience of endometriosis; to provide a critical commentary on the current state of knowledge and to make recommendations for future psycho-social research. METHODS The review draws on a method of critical narrative synthesis to discuss a heterogeneous range of both quantitative and qualitative studies from several disciplines. This included a systematic search, a structured process for selecting and collecting data and a systematic thematic analysis of results. RESULTS A total of 42 papers were included in the review; 23 used quantitative methods, 16 used qualitative methods and 3 were mixed methods studies. The majority of papers came from just four countries: UK (10), Australia (8), Brazil (6) and the USA (5). Key categories of impact identified in the thematic analysis were diagnostic delay and uncertainty; 'QoL' and everyday activities; intimate relationships; planning for and having children; education and work; mental health and emotional wellbeing and medical management and self-management. CONCLUSIONS Endometriosis has a significant social and psychological impact on the lives of women across several domains. Many studies have methodological limitations and there are significant gaps in the literature especially in relation to a consideration of the impact on partners and children. We recommend additional prospective and longitudinal research utilizing mixed methods approaches and endometriosis-specific instruments to explore the impact of endometriosis in more diverse populations and settings. Furthermore, there is an urgent need to develop and evaluate interventions for supporting women and partners living with this chronic and often debilitating condition.
Objective. Chronic knee pain is a major cause of disability and health care expenditure, but there are concerns about efficacy, cost, and side effects associated with usual primary care. Conservative rehabilitation may offer a safe, effective, affordable alternative. We compared the effectiveness of a rehabilitation program integrating exercise, self-management, and active coping strategies (Enabling Self-management and Coping with Arthritic Knee Pain through Exercise [ESCAPEknee pain]) with usual primary care in improving functioning in persons with chronic knee pain. Methods. We conducted a single-blind, pragmatic, cluster randomized controlled trial. Participants age >50 years, reporting knee pain for >6 months, were recruited from 54 inner-city primary care practices. Primary care practices were randomized to continued usual primary care (i.e., whatever intervention a participant's primary care physician deemed appropriate), usual primary care plus the rehabilitation program delivered to individual participants, or usual primary care plus the rehabilitation program delivered to groups of 8 participants. The primary outcome was self-reported functioning (Western Ontario and McMaster Universities Osteoarthritis Index physical functioning [WOMAC-func]) 6 months after completing rehabilitation. Results. A total of 418 participants were recruited; 76 (18%) withdrew, only 5 (1%) due to adverse events. Rehabilitated participants had better functioning than participants continuing usual primary care (؊3.33 difference in WOMAC-func score; 95% confidence interval [95% CI] ؊5.88, ؊0.78; P ؍ 0.01). Improvements were similar whether participants received individual rehabilitation (؊3.53; 95% CI ؊6.52, ؊0.55) or group rehabilitation (؊3.16; 95% CI ؊6.55, ؊0.12). Conclusion. ESCAPE-knee pain provides a safe, relatively brief intervention for chronic knee pain that is equally effective whether delivered to individuals or groups of participants.
Objective. Chronic joint pain is a major cause of pain and disability. Exercise and self-management have short-term benefits, but few studies follow participants for more than 6 months. We investigated the long-term (up to 30 months) clinical and cost effectiveness of a rehabilitation program combining self-management and exercise: Enabling SelfManagement and Coping of Arthritic Knee Pain Through Exercise (ESCAPE-knee pain). Methods. In this pragmatic, cluster randomized, controlled trial, 418 people with chronic knee pain (recruited from 54 primary care surgeries) were randomized to usual care (pragmatic control) or the ESCAPE-knee pain program. The primary outcome was physical function (Western Ontario and McMaster Universities Osteoarthritis Index [WOMAC] function), with a clinically meaningful improvement in physical function defined as a >15% change from baseline. Secondary outcomes included pain, psychosocial and physiologic variables, costs, and cost effectiveness. Results. Compared to usual care, ESCAPE-knee pain participants had large initial improvements in function (mean difference in WOMAC function ؊5.5; 95% confidence interval [95% CI] ؊7.8, ؊3.2). These improvements declined over time, but 30 months after completing the program, ESCAPE-knee pain participants still had better physical function (difference in WOMAC function ؊2.8; 95% CI ؊5.3, ؊0.2); lower community-based health care costs (£؊47; 95% CI £؊94, £؊7), medication costs (£؊16; 95% CI £؊29, £؊3), and total health and social care costs (£؊1,118; 95% CI £؊2,566, £؊221); and a high probability (80 -100%) of being cost effective. Conclusion. Clinical and cost benefits of ESCAPE-knee pain were still evident 30 months after completing the program. ESCAPE-knee pain is a more effective and efficient model of care that could substantially improve the health, well-being, and independence of many people, while reducing health care costs.
A small number of studies from the USA and Europe have provided some data on the profile and characteristics of women who have undergone oocyte cryopreservation for what has been termed elective, social or non-medical reasons; however, little is known in a UK context about which women are undergoing oocyte cryopreservation or their reproductive intentions and actions after the procedure. Drawing on data from an exploratory study of 23 UK resident women who had undergone social oocyte cryopreservation, the demographic profile of these women, their reproductive intentions and actions are discussed, as well as their attitudes and intentions towards their cryopreserved oocytes should they never require them in treatment. The study found that, at the time of oocyte cryopreservation, women were on average 36.7 years of age, were university educated, with 65% of the sample holding further postgraduate or professional qualifications. Fifty-seven per cent of the participants were in professional employment. All participants identified as heterosexual and 87% were not in a relationship at the time of cryopreserving their oocytes. Most (88%) participants stated that they would donate unwanted oocytes to research or to other women for use in fertility treatment should they never require them.
Objective. To conduct an economic evaluation of the Enabling Self-Management and Coping with Arthritic Knee Pain through Exercise (ESCAPE-knee pain) program. Methods. Alongside a clinical trial, we estimated the costs of usual primary care and participation in ESCAPE-knee pain delivered to individuals (Indiv-rehab) or groups of 8 participants (Grp-rehab). Information on resource use and informal care received was collected during face-to-face interviews. Cost-effectiveness and cost-utility were assessed from betweengroup differences in costs, function (primary clinical outcome), and quality-adjusted life years (QALYs). Cost-effectiveness acceptability curves were constructed to represent uncertainty around cost-effectiveness. Results. Rehabilitation (regardless of whether Indiv-rehab or Grp-rehab) cost £224 (95% confidence interval [95% CI] £184, £262) more per person than usual primary care. The probability of rehabilitation being more cost-effective than usual primary care was 90% if decision makers were willing to pay £1,900 for improvements in functioning. Indiv-rehab cost £314/person and Grp-rehab £125/person. Indiv-rehab cost £189 (95% CI £168, £208) more per person than Grp-rehab. The probability of Indiv-rehab being more cost-effective than Grp-rehab increased as willingness to pay (WTP) increased, reaching 50% probability at WTP £5,500. The lack of differences in QALYs across the arms led to lower probabilities of cost-effectiveness based on this outcome. Conclusion. Provision of ESCAPE-knee pain had small cost implications, but it was more likely to be cost-effective in improving function than usual primary care. Group rehabilitation reduces costs without compromising clinical effectiveness, increasing probability of cost-effectiveness.
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