Psychometric Properties of the Stellenbosch Endometriosis Quality of Life (SEQOL) Among Endometriosis Patients in the United Kingdom.

Background and Purpose: We aimed to determine the reliability and validity of the Stellenbosch Endometriosis Quality of Life (SEQOL) among patients with endometriosis in the United Kingdom. Methods: We used a cross-sectional research design that featured online data collection. We administered several measures to 596 participants. Data analysis included confirmatory factor analysis, exploratory factor analysis, reliability analysis, and correlations. Results: The data did not fit the original eight-factor structure, but rather a six-factor structure. Six items were removed. The measure produced strong internal consistency reliabilities. The SEQOL also demonstrated promising validity, producing strong correlations with another health-related quality of life (HRQOL) measure. Conclusion: In summary, we conclude that the United Kingdom version of the SEQOL is a viable measure of HRQOL.

Psychosocial correlates of symptoms of depression among patients with endometriosis in the United Kingdom.

A recent study found high levels (43%) of moderate to severe symptoms of depression among patients diagnosed with endometriosis in South Africa (SA) and identified several psychosocial predictors of these symptoms of depression. However, there is limited research on predictors of symptoms of depression in other settings. Considering the contextual differences between SA and the United Kingdom (UK) and their vastly different healthcare settings, we conducted a replication study in the UK and improved on the methodology by adding an established measure of sexual dysfunction to the model and obtaining a larger sample. The study comprised of a secondary analysis of cross-sectional data collected among patients with endometriosis. Study particulars were advertised by a national endometriosis association and data were collected online using Qualtrics. The sample consisted of 598 adults with self-reported endometriosis who completed measures assessing symptoms of depression, physical functioning, menstrual characteristics, sexual functioning, feelings about the medical profession, feelings about infertility, and sexual relationships. Seventy-one percent of participants reported moderate to severe levels of symptoms of depression. In addition, physical functioning, concerns about menstrual characteristics, sexual dysfunction, feelings about infertility and feelings about the medical profession were identified as significant predictors of symptoms of depression. It is important that healthcare professionals recognize that patients with endometriosis may be at risk of depression and that psychological referral should be considered.

The role of Endometriosis Clinical Nurse Specialists in British Society for Gynaecological Endoscopy registered centres: A UK survey of practice.

Aim: To identify Endometriosis Nurse Specialists' roles and responsibilities in accredited Endocentres, how these align with the Royal College of Nursing Skills Framework and potential for development to improve patient care. Design: Cross-sectional national survey. Methods: Data were collected from an online survey distributed to all 66 Endometriosis Nurse Specialists working across 58 UK-based Endometriosis registered centres. The response rate was 58% (N = 38). Data from closed questions were analysed using descriptive statistics, and free text responses were collated and analysed thematically. Results: Unlike Nurse Specialists in other fields of practice, most Endometriosis Nurse Specialists (N = 33, 87%) had another nursing role. The median hours worked per week as an endometriosis nurse was only 13.5 hr. Most respondents (N = 35, 92%) spent all or most of their allocated hours collecting and inputting endometriosis data, whilst over a third (N = 13, 34%) were not undertaking any autonomous, nurse-led patient consultations.

Men, chronic illness and healthwork: accounts from male partners of women with endometriosis.

Currently dominant in medical discourse, the concept of self-management sees the responsibility for health and illness shift from the state to the individual. However, while this emphasis on individual responsibility and management has burgeoned, the role and status of partners and other family members in the management of chronic illness remains under-theorised. While self-management privileges individual responsibility for the management of chronic illness, the role of partners remains unclear. This paper utilises data from a study of heterosexual couples' experiences of living with the chronic gynaecological condition endometriosis to explore how male partners engage in its day-to-day management. In all, 22 couples participated in in-depth, semi-structured interviews with each partner interviewed separately (n = 44). Data were analysed thematically and dyadically, informed by an interpretivist relational approach. The paper utilises the concept of healthwork to describe the illness work, everyday life work, biographical work and emotion work men engaged in. The paper demonstrates how the conceptual value of healthwork is enhanced by incorporating an analysis of the emotional effort required in managing chronic illness. The paper illustrates the value of investigating the role of partners in managing chronic illness to provide a fuller account of the distributed and relational nature of healthwork.

Conducting dyadic, relational research about endometriosis: A reflexive account of methods, ethics and data analysis.

Despite a growing literature on the value of relational data in studies of social phenomena, individuals still commonly constitute the basic unit of analysis in qualitative research. Methodological aspects of interviewing couples, particularly interviewing partners separately, and of conducting dyadic analysis have received scant attention. This article describes the experience of conducting separate interviews with both partners in 22 heterosexual couples (n = 44) in a study of the impact of the gynaecological condition endometriosis. In order to advance current methodological thinking regarding interviewing couples, we describe the dyadic, relational approach employed in designing the study and our specific method of dyadic analysis. We argue that utilising separate interviews with dyadic analysis rather than conducting joint interviews, while not without its ethical, practical and analytical challenges, offers considerable methodological benefits. Such an approach allows a unique relational insight into the impact of chronic illness on couples and how they navigate chronic illness by illuminating both shared and individual interpretations, experiences, understandings and meanings.

Running out of time: exploring women's motivations for social egg freezing.

Objective: Few qualitative studies have explored women's use of social egg freezing. Derived from an interview study of 31 participants, this article explores the motivations of women using this technology. Methods: Semi-structured interviews were conducted with 31 users of social egg freezing resident in UK (n = 23), USA (n = 7) and Norway (n = 1). Interviews were face to face (n = 16), through Skype and Facetime (n = 9) or by telephone (n = 6). Data were analyzed using interpretive thematic analysis. Results: Women's use of egg freezing was shaped by fears of running out of time to form a conventional family, difficulties in finding a partner and concerns about "panic partnering", together with a desire to avoid future regrets and blame. For some women, use of egg freezing was influenced by recent fertility or health diagnoses as well as critical life events. A fifth of the participants also disclosed an underlying fertility or health issue as affecting their decision. Conclusion: The study provides new insights in to the complex motivations women have for banking eggs. It identifies how women's use of egg freezing was an attempt to "preserve fertility" in the absence of the particular set of "life conditions" they regarded as crucial for pursuing parenthood. It also demonstrates that few women were motivated by a desire to enhance their career and that the boundaries between egg freezing for medical and for social reasons may be more porous than first anticipated.

'We needed to change the mission statement of the marriage': biographical disruptions, appraisals and revisions among couples living with endometriosis.

The concept of biographical disruption has been widely applied in sociological explorations of chronic illness and has been subject to much theoretical scrutiny, reflection and development. However, little attention has been given to the impact of biographical disruption beyond the individual level. This article explores the concept from a dyadic perspective, utilising data from an exploratory, qualitative study (ENDOPART) that investigated the impact of endometriosis on women and their male partners. In total, 22 couples participated in in-depth, semi-structured, face-to-face interviews. The women and their partners were interviewed separately and, in most cases, simultaneously, by different interviewers. Data analysis was informed by an interpretivist relational approach, foregrounding the meanings participants applied to their experiences, treating interviews as accounts, and exploring partners' accounts in relation to one another. Two analytic approaches generated several themes for exploration in the context of the concept of biographical disruption: sex and intimacy; planning for and having children; working lives and social lives. The article argues that biographical disruptions are social and inter-relational processes and discusses how couples living with endometriosis negotiated these disruptions, how they were appraised and how lives and expectations were revised as a result.

Oocyte cryopreservation for social reasons: demographic profile and disposal intentions of UK users.

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.

Reproductive technology and the life course: current debates and research in social egg freezing.

While there are currently few confirmed births from previously frozen eggs in the UK, the improved outcomes of new technologies of vitrification and intra-cytoplasmic sperm injection (ICSI) have led to the marketing of egg freezing for non-medical reasons, whereby women are offered the possibility of preserving their eggs until such time as they wish to have a child. Non-academic commentary on this phenomenon has commonly constructed it within a neo-liberal discourse of 'choice', whereby women are positioned as choosing to 'delay motherhood,' often for reasons relating to their careers. However, there have been relatively few research studies which explore either women's awareness and understandings of social egg freezing or the reasons why women consider or undertake egg freezing. This paper summarises the current academic discussion surrounding social egg freezing and outlines the limited body of empirical literature identified from a systematic search of relevant databases. The potential benefits and harms of social egg freezing and the ethical issues it raises are well rehearsed in existing literature, but there is limited empirical evidence about who is accessing social egg freezing, why they are taking this option and what their experiences and future intentions are.

The social and psychological impact of endometriosis on women's lives: a critical narrative review.

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.

Management of chronic knee pain: a survey of patient preferences and treatment received.

BACKGROUND: A range of interventions exist for the management of knee pain, but patient preferences for treatment are not clear. In this study the management received by people with chronic knee pain, their management preferences and reasons for these preferences were recorded. METHODS: At baseline assessment of a clinical trial of rehabilitation for chronic knee pain, 415 participants were asked about their i) previous management, ii) preferred treatment, if any, iii) whether they would undergo knee surgery and iv) reasons for their preferences. RESULTS: Previous management--Medication was the most common treatment, followed by physiotherapy, 39 participants had received no treatment. Preferences--166 patients expressed no treatment preference. Of those who expressed a preference the most popular option was physiotherapy, whilst not having surgery was the third most frequent response. The most common reason for preferring physiotherapy and not wanting surgery was prior experience.Willingness to accept surgery--390 participants were not waiting for knee replacement surgery, and overall 81% would not accept surgery if offered, usually because pain was not perceived to be severe enough to warrant surgery. CONCLUSION: Most chronic knee pain is managed with medication despite concerns about safety, efficacy and cost, management guidelines recommendations and people's management preferences. Previous experience and perceptions of need were major determinants of people's preferences, but many people were unaware of management options. Appreciating patient preferences and provision of more information about management options are important in facilitating informed patient/clinician discussion and agreement.

In osteoarthritis, the psychosocial benefits of exercise are as important as physiological improvements.

Exercise has a major role in the management of osteoarthritis, effecting well-documented physiological improvements on muscle function. However, exercise also has lasting benefits on the complex psychosocial sequelae of osteoarthritis--facilitating appropriate health beliefs, behaviors, pain coping, and self-management strategies--that are as important as its physiological effects.

Rheumatology outcomes: the patient's perspective.

Our aim was to explore the patient's perspective of outcomes in rheumatoid arthritis (RA) to identify which outcomes are important to patients and how patients calibrate what constitutes a meaningful change in those outcomes. A qualitative study was performed using focus groups in 5 clinical centers in different geographical locations in the UK. Each group contained 6 to 9 patients with RA who were purposefully sampled to include men and women with a range of age, disease duration, functional disability, work disability, and current disease activity. Each focus group lasted around 1 h and addressed 3 questions: What outcomes from treatment are important to RA patients? What makes patients satisfied or dissatisfied with a treatment? How do patients decide that a treatment is working? Patients identified as important not only physical outcomes such as pain and disability, but also fatigue and a general feeling of wellness. The relative importance of these outcomes depended on the stage of disease and on specific situations, such as a disease flare. Satisfaction was influenced by communication, access to treatment, and treatment efficacy. Treatment efficacy was related to symptom reduction, with the magnitude of reduction necessary for efficacy dependent on the stage of disease. For example, large changes were deemed necessary with disease of long duration, while in early disease, even small changes could be important. Our data support existing knowledge of the importance of pain and mobility as treatment outcomes, but raise new and important issues: Some outcomes of importance to patients are not currently measured and there are no measures available to capture them. Existing measures need to be calibrated to take account of the differing importance of outcomes at different stages of disease and variations in the magnitude of change within the same outcome that indicate treatment efficacy.