Living With Endometriosis: A Reflexive Thematic Analysis Examining Women's Experiences With the Irish Healthcare Services.

Endometriosis is an incurable chronic condition associated with debilitating pain and subfertility, affecting 1 in 10 women. The current study aims to explore the perceptions and experiences of women with endometriosis regarding the diagnosis, support and treatment options available in Ireland. It will further determine whether additional supports or improvements are needed to care well and effectively for women with this disease in the Irish healthcare system. A qualitative study design was deemed most suitable. Twenty participants, women aged 18 and over with a diagnosis of endometriosis and experience of the Irish healthcare system, were recruited through purposeful sampling to complete semi-structured, one-to-one online interviews. Data was analysed using reflexive thematic analysis, and five themes were identified: 'dismissive attitudes normalising severe pain', 'inadequate health system', 'the impact of delayed diagnoses', 'lack of education and awareness' and 'navigating ignorance, taboo and societal views'. Insights into the experiences and needs of women diagnosed with endometriosis in Ireland were gained, and we discuss the implications of our findings for Irish healthcare services with reference to feminist health equity and recent national action plans. We propose a series of recommendations for patient-centred care models including increased access to training and education, as well as support for longer-term chronic pain management.

Supporting family carers in general practice: a scoping review of clinical guidelines and recommendations.

BACKGROUND: Increasing numbers of family carers are providing informal care in community settings. This creates a number of challenges because family carers are at risk of poor physical and psychological health outcomes, with consequences both for themselves and those for whom they provide care. General Practitioners (GPs), who play a central role in community-based care, are ideally positioned to identify, assess, and signpost carers to supports. However, there is a significant gap in the literature in respect of appropriate guidance and resources to support them in this role. METHODS: A scoping review was undertaken to examine clinical guidelines and recommendations for GPs to support them in their role with family carers. This involved a multidisciplinary team, in line with Arksey & O'Malley's framework, and entailed searches of ten peer-reviewed databases and grey literature between September-November 2020. RESULTS: The searches yielded a total of 4,651 English language papers, 35 of which met the criteria for inclusion after removing duplicates, screening titles and abstracts, and performing full-text readings. Ten papers focused on resources/guidelines for GPs, twenty were research papers, three were review papers, one was a framework of quality markers for carer support, and one was an editorial. Data synthesis indicated that nine (90%) of the guidelines included some elements relating to the identification, assessment, and/or signposting of carers. Key strategies for identifying carers suggest that a whole practice approach is optimal, incorporating a role for the GP, practice staff, and for the use of appropriate supporting documentation. Important knowledge gaps were highlighted in respect of appropriate clinical assessment and evidence-based signposting pathways. CONCLUSION: Our review addresses a significant gap in the literature by providing an important synthesis of current available evidence on clinical guidelines for GPs in supporting family carers, including strategies for identification, options for assessment and potential referral/signposting routes. However, there is a need for greater transparency of the existing evidence base as well as much more research to evaluate the effectiveness and increase the routine utilisation, of clinical guidelines in primary care.

Supporting family carers in Ireland: the role of the general practitioner.

BACKGROUND: Ireland has over half a million family carers who provide care to a family member or loved one. Internationally, it is recognised that general practitioners (GPs) have a critical role to play in the identification and support of family carers, but, to date, no guidelines exist in Ireland to support GPs in this role. AIMS: The aim of this study was to examine how carers are currently supported (or not) by healthcare professionals in Ireland, with a particular focus on the role of the GP. METHODS: A mixed method design was used, involving a national online survey (N = 132) of family carers in Ireland and one-to-one interviews with 10 stakeholders (4 GPs; 6 carers). The quantitative data were analysed using a series of descriptive and inferential statistics; the interview data were analysed using framework analysis. RESULTS: Sixty-one per cent of the carer sample reported experiencing psychological distress, more than two-thirds of whom (69%) reported 'rarely' or 'never' being asked about their own health and wellbeing. Sixty-one per cent also felt misunderstood in terms of the challenges they face in their caring role. Three key themes were identified from the interview data including (1) GP role ambiguity; (2) navigating informal processes and (3) changing needs along the care trajectory. CONCLUSIONS: The findings suggest important gaps in terms of the role of GPs vis-à-vis their support of family carers. GPs themselves indicated that they need both greater clarity regarding their role with family carers and more training and resources in this regard. A requirement for more streamlined communication and information provision was also highlighted by both GPs and carers. Carers reported a need for more information on the role of GPs in supporting carers as well as more support in addressing, in particular, the psychological complexities of carer identity and help seeking.

Involving young people in cyberbullying research: The implementation and evaluation of a rights-based approach.

BACKGROUND: Cyberbullying is an international Public Health concern. Efforts to understand and address it can be enhanced by involving young people. This paper describes a rights-based collaboration with young people in a qualitative exploration of cyberbullying. It describes the establishment, implementation and evaluation of a Young Person's Advisory Group as well as identifying the impact on the research process and the young people involved. METHODS: Sixteen postprimary school students met with researchers on five occasions in a youth centre. Sessions focused on building the young people's capacity to engage with the research, designing the qualitative study, interpreting study findings and evaluating the collaboration process. RESULTS: The Advisory Group highlighted a lack of understanding and appropriate action with regard to cyberbullying but believed that their involvement would ultimately help adults to understand their perspective. Evaluation findings indicate that members were supported to form as well as express their views on the design, conduct and interpretation of the research and that these views were acted upon by adult researchers. Their involvement helped to ensure that the research was relevant and reflective of the experiences, interests, values and norms of young people. CONCLUSION: Young people can contribute a unique perspective to the research process that is otherwise not accessible to adult researchers. The approach described in this study is a feasible and effective way of operationalizing young people's involvement in health research and could be adapted to explore other topics of relevance to young people.

Alcohol consumption among university students: a typology of consumption to aid the tailoring of effective public health policy.

OBJECTIVE: Elevated levels of alcohol consumption among university students are well documented. Policymakers have attempted to combat this issue at a university, national and international level. Tailoring public health policy to effectively tackle alcohol use is crucial. Using Q-methodology, the current study aims to develop a typology of alcohol consumption in the Irish university student population. SETTING: A large Irish university. PARTICIPANTS: Hundreds of possible statements on types of consumption were generated from a systematic review and a set of one-on-one interviews. These were reduced to 36 statements, 6 statements which define each of the 6 previously defined consumption types. Participants were advised to scan through the 36 statements and fill the statements into a 'forced choice, standardised distribution'. Following this, a 45-90 min interview was conducted with students to illuminate subjectivity surrounding alcohol consumption. Analysis was conducted using PQ Method and NVivo software. Principal component analysis, followed by varimax rotation, was conducted to uncover the final factor information. RESULTS: In total, 43 students completed the Q-study: 19 men and 24 women. A typology describing 4 distinct groupings of alcohol consumer was uncovered: the guarded drinker, the calculated hedonist, the peer-influenced drinker and the inevitable binger. Factor loadings of each of the consumer groupings were noted for type description. CONCLUSIONS: This is the first study to propose ideal types of alcohol consumption among a university student population. Further research is required to investigate the degree to which each of these ideal types is subscribed. However, this typology, in addition to informing public policy and strategies, will be a valuable analytic tool in future research.

Pauci-Immune Crescentic Glomerulonephritis in Connective Tissue Disease.

Pauci-immune crescentic glomerulonephritis is commonly seen in ANCA-associated vasculitis but it is rarely seen during the course of other connective tissue diseases like lupus or Sjogren's syndrome or MCTD. We report 3 cases of pauci-immune crescentic glomerulonephritis in patients with connective tissue disease other than vasculitis. We reviewed literature and made summary of previously reported cases of this rare entity. Clinical and laboratory features of these patients varied widely, but most of patients have met criteria for lupus. In this small population of patients there is no correlation with ANCAs. Most of the patients were treated with aggressive immunosuppression and did well if they were treated early in the course of their disease. One of our patients required renal transplant, but she presented late in the course of her disease, as evidenced by chronicity on her renal biopsy. Whether these patients are overlap of vasculitis and other connective tissue diseases or to be considered as a separate entity is yet to be described. Clinicians must be aware of these presentations because initial presentation can be severe.

The true financial impact of hospital readmissions.

Hospital executives working to reduce the cost of readmissions should note that: The penalty imposed by the Centers for Medicare & Medicaid Services (CMS) for excess readmissions can be disproportionately high The true cost of readmissions goes beyond the CMS penalty Even small reductions in readmissions can substantially reduce penalties Changes to healthcare reimbursement, such as bundled payments, will also incentivize hospitals to reduce readmissions.

Intra- and postoperative very low dose intravenous ketamine infusion does not increase pain relief after major spine surgery in patients with preoperative narcotic analgesic intake.

OBJECTIVE: This study aims to demonstrate the analgesic efficacy and opioid-sparing effect of low dose ketamine in patients with preoperative narcotic intake undergoing major spine surgery. DESIGN: The study used a prospective, randomized, double-blinded, and placebo-controlled clinical trial. SETTINGS AND PATIENTS: We evaluated the analgesic efficacy and safety of low dose IV ketamine infusion after major spine surgery in patients with preoperative narcotic analgesic intake. Ketamine group received IV ketamine infusion (2 µg/kg/min) and saline group received saline intraoperatively and the first 24 hours postoperatively. In addition, all patients received IV patient-controlled hydromorphone and epidural bupivacaine. OUTCOME MEASURES: Pain scores, narcotic requirement, and side effects were compared between the groups for 48 hours postoperatively. RESULTS: Thirty patients completed the study (N = 15 in each group). No difference in pain scores at rest and movement was noted between the groups (P > 0.05). Patients in ketamine group received 40.42 ± 32.86 mg IV hydromorphone at 48 hours compared with 38.24 ± 26.19 mg in saline group (P = 0.84). Central nervous system side effects were observed in five (33%) ketamine group patients compared with nine (60%) in saline group (P = 0.29). CONCLUSION: The addition of IV very low dose ketamine infusion regimen did not improve postoperative analgesia. Side effects were not increased with low dose ketamine.

Diagnosis and treatment of the idiopathic inflammatory myopathies.

The idiopathic inflammatory myopathies (IIMs) are rare disorders with the unifying feature of proximal muscle weakness. These diseases include polymyositis(PM), dermatomyositis (DM) and inclusion body myositis (IBM) as the most common. The diagnosis is based on the finding of weakness on exam, elevated muscles enzymes, characteristic histopathology of muscle biopsies, electromyography abnormalities and rash in DM. Myositis-specific antibodies have been helpful in defining subsets of patients with different responses to treatment and prognosis. The cornerstone of therapy is corticosteroids with the addition of other immunosuppressives in severe or refractory disease or patients with intolerable side effects. IBM is particularly difficult to treat but is more slowly progressive as compared with PM or DM. There is still a great need to find more effective and less-toxic therapies.

A qualitative study of trends in patient preferences for the management of the partially dentate state.

OBJECTIVE: To identify factors influencing attitudes of partially dentate adults towards dental treatment in Ireland. BACKGROUND: People are retaining more teeth later in life than ever before. Management of partially dentate older adults will be a major requirement for the future and it is important to determine factors which may influence patients' attitudes to care. SUBJECTS: A purposive sample of 22 partially dentate patients was recruited; 12 women and 12 men, ranging in age from 45 to 75 years. DATA COLLECTION: Semi-structured individual interviews. RESULTS: Dental patients have increasing expectations in relation to (i) a more sophisticated approach to the management of missing teeth and (ii) their right to actively participate in decision making regarding the management of their tooth loss. There is some evidence of a cohort effect with younger patients (45-64 years) having higher expectations. CONCLUSIONS: The evidence of a cohort effect within this study in relation to higher patient expectations indicates that both contemporary and future patients are likely to seek a service based on conservation and restoration of missing teeth by fixed prostheses.

Combined oral contraceptives in women with systemic lupus erythematosus.

BACKGROUND: Oral contraceptives are rarely prescribed for women with systemic lupus erythematosus, because of concern about potential negative side effects. In this double-blind, randomized, noninferiority trial, we prospectively evaluated the effect of oral contraceptives on lupus activity in premenopausal women with systemic lupus erythematosus. METHODS: A total of 183 women with inactive (76 percent) or stable active (24 percent) systemic lupus erythematosus at 15 U.S. sites were randomly assigned to receive either oral contraceptives (triphasic ethinyl estradiol at a dose of 35 microg plus norethindrone at a dose of 0.5 to 1 mg for 12 cycles of 28 days each; 91 women) or placebo (92 women) and were evaluated at months 1, 2, 3, 6, 9, and 12. Subjects were excluded if they had moderate or high levels of anticardiolipin antibodies, lupus anticoagulant, or a history of thrombosis. RESULTS: The primary end point, a severe lupus flare, occurred in 7 of 91 subjects receiving oral contraceptives (7.7 percent) as compared with 7 of 92 subjects receiving placebo (7.6 percent). The 12-month rates of severe flare were similar: 0.084 for the group receiving oral contraceptives and 0.087 for the placebo group (P=0.95; upper limit of the one-sided 95 percent confidence interval for this difference, 0.069, which is within the prespecified 9 percent margin for noninferiority). Rates of mild or moderate flares were 1.40 flares per person-year for subjects receiving oral contraceptives and 1.44 flares per person-year for subjects receiving placebo (relative risk, 0.98; P=0.86). In the group that was randomized to receive oral contraceptives, there was one deep venous thrombosis and one clotted graft; in the placebo group, there was one deep venous thrombosis, one ocular thrombosis, one superficial thrombophlebitis, and one death (after cessation of the trial). CONCLUSIONS: Our study indicates that oral contraceptives do not increase the risk of flare among women with systemic lupus erythematosus whose disease is stable.

The effect of combined estrogen and progesterone hormone replacement therapy on disease activity in systemic lupus erythematosus: a randomized trial.

BACKGROUND: There is concern that exogenous female hormones may worsen disease activity in women with systemic lupus erythematosus (SLE). OBJECTIVE: To evaluate the effect of hormone replacement therapy (HRT) on disease activity in postmenopausal women with SLE. DESIGN: Randomized, double-blind, placebo-controlled noninferiority trial conducted from March 1996 to June 2002. SETTING: 16 university-affiliated rheumatology clinics or practices in 11 U.S. states. PATIENTS: 351 menopausal patients (mean age, 50 years) with inactive (81.5%) or stable-active (18.5%) SLE. INTERVENTIONS: 12 months of treatment with active drug (0.625 mg of conjugated estrogen daily, plus 5 mg of medroxyprogesterone for 12 days per month) or placebo. The 12-month follow-up rate was 82% for the HRT group and 87% for the placebo group. MEASUREMENTS: The primary end point was occurrence of a severe flare as defined by Safety of Estrogens in Lupus Erythematosus, National Assessment-Systemic Lupus Erythematosus Disease Activity Index composite. RESULTS: Severe flare was rare in both treatment groups: The 12-month severe flare rate was 0.081 for the HRT group and 0.049 for the placebo group, yielding an estimated difference of 0.033 (P = 0.23). The upper limit of the 1-sided 95% CI for the treatment difference was 0.078, within the prespecified margin of 9% for noninferiority. Mild to moderate flares were significantly increased in the HRT group: 1.14 flares/person-year for HRT and 0.86 flare/person-year for placebo (relative risk, 1.34; P = 0.01). The probability of any type of flare by 12 months was 0.64 for the HRT group and 0.51 for the placebo group (P = 0.01). In the HRT group, there were 1 death, 1 stroke, 2 cases of deep venous thrombosis, and 1 case of thrombosis in an arteriovenous graft; in the placebo group, 1 patient developed deep venous thrombosis. LIMITATIONS: Findings are not generalizable to women with high-titer anticardiolipin antibodies, lupus anticoagulant, or previous thrombosis. CONCLUSIONS: Adding a short course of HRT is associated with a small risk for increasing the natural flare rate of lupus. Most of these flares are mild to moderate. The benefits of HRT can be balanced against the risk for flare because HRT did not significantly increase the risk for severe flare compared with placebo.

Measles outbreak in Dublin, 2000.

BACKGROUND: An outbreak of measles occurred in Ireland between December 1999 and July 2000. The majority of cases were in north Dublin, the catchment area of The Children's University Hospital (TCUH). METHODS: Details of all of the 111 children attending the hospital with a diagnosis of measles between December 1999 and July 2000 were prospectively entered into a database. Charts were subsequently reviewed to extract epidemiologic and clinical details. National figures were obtained from the National Disease Surveillance Centre. RESULTS: In the study period 355 attended TCUH with a serologic or clinical diagnosis of measles, and 111 were admitted (47% female, 53% male). The main indications for admission were dehydration in 79%, pneumonia or pneumonitis in 47% and tracheitis in 32%. Thirteen children (11.7% of those admitted) required treatment in the intensive care unit, and in 7 of these mechanical ventilation was necessary. There were 3 deaths as a result of measles. Public health measures to curb spread of the disease included promotion of immunization for susceptible children nationally and recommending administration of measles-mumps-rubella vaccine (MMR) from the age of 6 months, in North Dublin. CONCLUSION: This outbreak of measles posed a major challenge to the hospital and the community for the first half of 2000. The national MMR immunization rate before the outbreak was gravely suboptimal at 79%, whereas the rate in North Dublin, the catchment area of TCUH, was <70%. Three children died as a result of a vaccine-preventable illness.

Self-monitoring and at-risk middle school students. Academic performance improves, maintains, and generalizes.

Using a multiple baseline design across six academic settings, we found that teaching 4 at-risk middle school students to self-monitor markedly improved their academic performance as measured by their grades and related academic behaviors. Furthermore, these improvements generalized to settings where self-monitoring was never introduced, and they maintained the following school year. In this charter middle school setting, self-monitoring proved to be an extremely effective intervention. These findings suggest that it would be equally effective in a variety of settings.