Georgina Jones

The impact of endometriosis upon quality of life: a qualitative analysis

Objective: to explore and describe the impact of endometriosis upon quality of life. Setting: Nuffield Department of Obstetrics and Gynaecology, University of Oxford. Design: qualitative study. Sample: twenty-four women with a laparoscopic diagnosis of endometriosis. Methods: face to face, individual, in-depth interviews. Results: analysis of the data revealed 15 descriptive categories. Pain, physical functioning, role performance, social functioning, emotional well-being, relationship with the medical profession, treatment, sexual intercourse, energy and vitality, employment and infertility were found to be a particular concern for women with endometriosis. Physical appearance, lack of control and powerlessness, feelings of social isolation and concerns that their daughters might develop endometriosis were new areas found to be negatively affected by the condition. Conclusions: the impact of endometriosis-associated symptoms upon quality of life is multidimensional and more complex than just negatively affecting psychosocial parameters. Conducting in-depth interviews to explore the subjective experiences of patients with endometriosis enabled the diverse areas of quality of life to be identified. Adopting a qualitative methodology is essential for item generation on disease specific health status questionnaires.

Effects of cigarette smoking upon clinical outcomes of assisted reproduction: a meta-analysis

BACKGROUND The aim of this meta-analysis was to investigate whether any difference exists in success rate of clinical outcomes of assisted reproductive technologies (ART) between women who actively smoke cigarettes at the time of treatment and those who do not. METHODS An intensive computerized search was conducted on published literature from eight databases, using search terms related to smoking, assisted reproduction and outcome measures. Eligible studies compared outcomes of ART between cigarette smoking patients and a control group of non-smoking patients and reported on live birth rate per cycle, clinical pregnancy rate per cycle, ectopic pregnancy rate per pregnancy or spontaneous miscarriage rate per pregnancy, and 21 studies were included in the meta-analyses. Pooled odds ratios (OR) and 95% confidence intervals (CI) were calculated for the data, and statistical heterogeneity was tested for using chi(2) and I(2) values. A systematic review examined the effect of smoking upon fertilization rates across 17 studies. RESULTS Smoking patients demonstrated significantly lower odds of live birth per cycle (OR 0.54, 95% CI 0.30-0.99), significantly lower odds of clinical pregnancy per cycle (OR 0.56, 95% CI 0.43-0.73), significantly higher odds of spontaneous miscarriage (OR 2.65, 95% CI 1.33-5.30) and significantly higher odds of ectopic pregnancy (OR 15.69, 95% CI 2.87-85.76). A systematic literature review revealed that fertilization rates were not significantly different between smoking and non-smoking groups in most studies. CONCLUSIONS This meta-analysis provides compelling evidence for a significant negative effect of cigarette smoking upon clinical outcomes of ART and should be presented to infertility patients who smoke cigarettes in order to optimize success rates.

Critical perspectives on 'consumer involvement' in health research: Epistemological dissonance and the know-do gap

Researchers in the area of health and social care (both in Australia and internationally) are encouraged to involve consumers throughout the research process, often on ethical, political and methodological grounds, or simply as ‘good practice’. This article presents findings from a qualitative study in the UK of researchers’ experiences and views of consumer involvement in health research. Two main themes are presented. First, we explore the ‘know—do gap’ which relates to the tensions between researchers’ perceptions of the potential benefits of, and their actual practices in relation to, consumer involvement. Second, we focus on one of the reasons for this ‘know—do gap’, namely epistemological dissonance. Findings are linked to issues around consumerism in research, lay/professional knowledges, the (re)production of professional and consumer identities and the maintenance of boundaries between consumers and researchers.

Health researchers' attitudes towards public involvement in health research

Objective  To investigate health researchers’ attitudes to involving the public in research.

Health related quality of life in Malaysian children with thalassaemia

BackgroundHealth Related Quality of Life (HRQoL) studies on children with chronic illness such as thalassaemia are limited. We conducted the first study to investigate if children with thalassaemia have a lower quality of life in the four dimensions as measured using the PedsQL 4.0 generic Scale Score: physical, emotional, social and role (school) functioning compared to the healthy controls allowing for age, gender, ethnicity and household income.MethodsThe PedsQL 4.0 was administered to children receiving blood transfusions and treatments at Hospital Kuala Lumpur, Malaysia using PedsQL 4.0 generic Scale Score. Accordingly, the questionnaire was also administered to a control group of healthy school children. Socio-demographic data were also collected from patients and controls using an interview schedule designed for the study.ResultsOf the 96 thalassaemia patients approached, 78 gave consent to be interviewed giving a response rate of 81.3%. Out of 235 healthy controls approached, all agreed to participate giving a response rate of 100%. The mean age for the patients and schoolchildren is 11.9 and 13.2 years respectively. The age range for the patients and the schoolchildren is between 5 to 18 years and 7 to 18 years respectively. After controlling for age and demographic background, the thalassaemia patients reported having significantly lower quality of life than the healthy controls.ConclusionThalassaemia has a negative impact on perceived physical, emotional, social and school functioning in thalassaemia patients which was also found to be worse than the childrens healthy counterparts. Continuing support of free desferal from the Ministry of Health should be given to these patients. More understanding and support especially from health authorities, school authorities and the society is essential to enhance their quality of life.

Evaluating the responsiveness of the Endometriosis Health Profile Questionnaire: the EHP-30.

Objectives: To evaluate the sensitivity to change of the Endometriosis Health Profile-30 (EHP-30) questionnaire. Setting: The Womens Center, John Radcliffe Hospital, Oxford. Design: Postal survey to 66 women undergoing conservative surgery for the treatment of endometriosis-associated pain. The EHP-30 and the Short Form-36 (SF-36) were administered 2 weeks before the operation, and 4 months post-operatively. At T2 a transition question was included to evaluate changes in patients health status. To evaluate responsiveness effect sizes, standardised response means, the index of responsiveness and the minimally and clinically important differences were calculated. Results: Forty (66.6%) patients returned the questionnaires at time 1 and 2. Overall less responsive effect size scores were found for the SF-36 (0.1–0.5) compared to the EHP-30 (−0.1–1.1) for all patients who had undergone treatment. Minimally important differences and the index of responsiveness were overall higher for the EHP-30 (0.4–2.0) compared to the SF-36 (0.1–1.0). Change scores for four of the five scales were significantly correlated with womens responses to the transition question. Conclusions: Results suggest that the EHP-30 is sensitive to change. Its application in clinical trials should prove beneficial in assessing the impact of medical and surgical interventions upon quality of life for women with endometriosis.

Novel treatment for joint inflammation.

THE use of liposomes in the entrappment and administration of several therapeutic agents has been described for the treatment of cancer1 and heavy metal poisoning2, and in enzyme replacement therapy3. The advantages of a liposome drug over the use of free or polymer-bound agent are decreased toxicity and degradation, the use of smaller doses and the possibility of targeting the liposome towards a given tissue or site4. The localised administration of therapeutic agents, such as the intra-articular injection of cortisol esters in the treatment of rheumatoid arthritis5, is a situation where the use of liposomes as a means of providing a stable particulate suspension of entrapped steroid might be used to advantage. This method should reduce considerably the effective dose required to produce relief, and diminish side effects due to escape of steroid from the joint6. We report here that the treatment of an acute experimental arthritis in the rabbit with a liposome preparation containing cortisol results in a significant reduction in joint temperature and diameter, whereas treatment with an equivalent amount of cortisol alone, or with liposomes lacking cortisol, does not reduce these two parameters of inflammation.

Computer interviewing in urogynaecology: concept, development and psychometric testing of an electronic pelvic floor assessment questionnaire in primary and secondary care

Objective  To develop and evaluate a Web‐based, electronic pelvic floor symptoms assessment questionnaire (e‐PAQ) 1 for women.

Development of the Short Form Endometriosis Health Profile Questionnaire: the EHP-5.

Objective: To develop and validate a short form version of the Endometriosis Health Profile-30 questionnaire which consists of a 30-item core questionnaire and a 23 item modular questionnaire. Methods: Three studies were carried out to develop the Endometriosis Health Profile-5. Study 1: a short form version of the Endometriosis Health Profile-30 core questionnaire was developed. Study 2: the results were verified in a new data set. Study 3: a short form version of the 23 item modular questionnaire was produced. The modular questionnaire contains six dimensions which may not be applicable to every woman with endometriosis and is used to supplement the five scales on the core questionnaire when required. Results: The final instrument contained 11 items: five items from the core questionnaire and six items from the modular questionnaire. The 95% confidence intervals for Study 1 indicated that the scale scores overlapped with each item score and were confirmed in the second analysis (study 2). Each item was most highly correlated to its parent scale and less with the remaining four core questionnaire scales which was verified in study 2. In both studies all correlations were significant at the 0.01 level (two tailed test). Conclusion: The Endometriosis Health Profile-5 is a reliable and valid short form questionnaire which can also be supplemented with a short form version of the modular questionnaire when required. It will be especially useful in clinical settings where a short and economical endometriosis health status measure is required.

Characteristics of patients with endometriosis in the United States and the United Kingdom

OBJECTIVE To investigate differences in characteristics of patients with endometriosis in the United States and the United Kingdom. DESIGN Patient questionnaire. SETTING Two university-based endometriosis referral centers. PATIENT(S) Women with surgically diagnosed endometriosis. INTERVENTION(S) None. MAIN OUTCOME MEASURE(S) Patient demographics, menstrual and obstetric history, contraceptive use, medical history, risk factors, family history, endometriosis diagnosis, and current pain status and treatment. RESULT(S) Most demographic characteristics were similar between groups. However, patients in the United States were diagnosed at a younger age than were patients in the United Kingdom (25.6 +/- 6.7 years vs. 28.0 +/- 7.1 years) and more commonly presented with an ovarian mass. More U.K. women used oral contraceptives before diagnosis and were younger at first use. U.K. patients underwent fewer additional surgeries than U.S. patients but reported that surgery alone provided the best relief of symptoms, whereas most U.S. patients reported that surgical and medical therapy together provided the best relief of symptoms. CONCLUSION(S) The many similarities in demographics and symptoms among women with endometriosis in the U.S. and the U.K. support the universality of the disease process. Despite a variety of treatments, most patients from both groups still experienced pain from their endometriosis at the time of the survey.