The challenges with managing polycystic ovary syndrome: A qualitative study of women’s and clinicians’ experiences

ObjectiveTo explore clinicians’ and women’s views and experiences with managing polycystic ovary syndrome (PCOS).MethodsSemi-structured interviews with 36 clinicians and 26 women with PCOS. Clinicians were recruited through advertising via relevant professional organisations, snowballing and contacting clinics across Australia. Women with PCOS were recruited through social media advertising. Transcribed audio-recordings were analysed thematically using Framework analysis.ResultsFindings across women with PCOS and clinician interviews were organised into three themes. Both women and clinicians experienced 1) challenges with managing PCOS, often stemming from the disparate and wide spectrum of presentations, issues with current treatment options (including limited evidence) and the long-term nature of management. Both spoke about 2) online information about PCOS and alternative treatments, including lack of relevant information and widespread misinformation. 3) Follow-up and continuity of care, where we found notable differences between women’s and clinicians’ expectations.ConclusionsThis is the first study to explore both clinicians’ and women’s experiences with managing PCOS, illustrating several challenges in managing this heterogeneous condition.Practice implicationsClarifying and addressing patient expectations, providing personalised counselling and information according to PCOS phenotype and a multidisciplinary approach may reduce uncertainty and improve patient-centred care.     

Parkinson’s disease and Alzheimer’s disease: a Mendelian randomization study

Background

Alzheimer’s disease (AD) and Parkinson’s disease (PD) are the top two common neurodegenerative diseases in elderly. Recent studies found the α-synuclein have a key role in AD. Although many clinical and pathological features between AD and PD are shared, the genetic association between them remains unclear, especially whether α-synuclein in PD genetically alters AD risk.

Results

We did not obtain any significant result (OR?=?0.918, 95% CI: 0.782–1.076, P?=?0.291) in MR analysis between PD and AD risk. In MR between α-synuclein in PD with AD risk, we only extracted rs356182 as the IV through a strict screening process. The result indicated a significant association based on IVW method (OR?=?0.638, 95% CI: 0.485–0.838, P?=?1.20E-03). In order to examine the robustness of the IVW method, we used other three complementary analytical methods and also obtained consistent results.

Conclusion

The overall PD genetic risk factors did not predict AD risk, but the α-synuclein susceptibility genetic variants in PD reduce the AD risk. We believe that our findings may help to understand the association between them, which may be useful for future genetic studies for both diseases.

     

Everyday stress and crohn’s disease activity: A time series analysis of 20 single cases

In a 84-day long-term study involving 20 patients with active Crohn’s disease, the relation between daily stress and symptomatology was investigated. The diagnoses were verified clinically, endoscopically, radiologically, and histologically. The Crohn symptomatology was assessed by a daily symptoms diary. The degree of everyday stress was measured with a daily hassles scale. Additionally, the disease activity was measured 4 times. The data were evaluated using a time series analysis method following the ARIMA model (autoregressive integrative moving average model), which takes the autocorrelation of the data into account. In 55% of the cases, a significant correlation between daily hassles and disease activity was found. Patients whose symptomatology responded to stress did not differ from nonresponders in age, duration of the disease, disease activity, frequency of abdominal surgery, partnership situation, or statements concerning their average level of daily hassles. Disease activity in general did not change during the observation period. A verified influence of daily hassles on Crohn symptomatology as a rule occurs on the same day with time lag 0. According to these results, the group of Crohn’s disease patients is not homogenous. The widely held assumption that daily hassles influence the symptomatology cannot generally be confirmed. Variations may result from different ways of coping with stress. Long-term effects of daily hassles on the disease are not clear. This research was supported by a grant of the German Research Foundation (DFG) given to HCT (Tr 233/7-1).     

ReviewGenetics,lifestyle and the roles of amyloid β and oxidative stress in Alzheimer’s disease

This paper reviews a wide range of recent studies that have linked AD-associated biochemical and physiological changes with oxidative stress and damage. Some of these changes include disruptions in metal ion homeostasis, mitochondrial damage, reduced glucose metabolism, decreased intracellular pH and inflammation. Although the changes mentioned above are associated with oxidative stress, in most cases, a cause and effect relationship is not clearcut, as many changes are interlinked. Increases in the levels of Aβ peptides, the main protein components of the cerebral amyloid deposits of AD, have been demonstrated to occur in inherited early-onset forms of AD, and as a result of certain environmental and genetic risk factors. Aβ peptides have been shown to exhibit superoxide dismutase activity, producing hydrogen peroxide which may be responsible for the neurotoxicity exhibited by this peptide in vitro. This review also discusses the biochemical aspects of oxidative stress, antioxidant defence mechanisms, and possible antioxidant therapeutic measures which may be effective in counteracting increased levels of oxidative stress. In conclusion, this review provides support for the theory that damage caused by free radicals and oxidative stress is a primary cause of the neurodegeneration seen in AD with Aβ postulated as an initiator of this process.     

Analysis of the parameters of oxidative stress in patients with Parkinson’s disease

The increasing data provides enough evidences confirming the involvement of free radicals and other reactive oxygen species (ROS) superoxide radical ( ^. O ₂ ^? ), nitric oxide (NO ^. ), hydrogen peroxide (H₂O₂) and hydroxyl radicals ( ^. OH) in a number of physiological and pathological processes. Imbalance between levels of ROS resulting in the body and the capacity of antioxidant defense mechanisms occur oxidative stress (OS). OS is related to a number of structural and functional damages to cells and is involved in the pathogenesis of many diseases, including neurodegenerative diseases such as Alzheimer’s disease, Parkinson’s disease (PD), amyotrophic lateral sclerosis, and Huntington disease. Defects in oxidative phosphorylation and oxidative damage play an important role in neurodegenerative diseases. The aim of this study was to investigate some biomarkers of OS such as the level of lipid peroxidation measured as malondialdehyde (MDA) reactive products and activity of antioxidant enzymes superoxide dismutase (SOD) and catalase (CAT) in the blood of PD patients compared with control group of healthy volunteers. By the present research we report higher levels of MDA products and an imbalance in SOD and CAT enzyme activities in PD patients compared to the control group.     

Recovery from postpartum psychosis: a systematic review and metasynthesis of women’s and families’ experiences

Postpartum psychosis is a serious disorder that can result in adverse consequences for the mother and baby. It is important that we understand the experiences of women, to develop effective interventions during this critical period. The aim of this systematic review was to conduct a metasynthesis of qualitative research exploring women’s experiences of postpartum psychosis and factors involved in recovery from the perspective of women and family members. A comprehensive literature search of five databases was conducted and the findings were appraised and synthesised, following a thematic synthesis approach. Fifteen studies, capturing the views of 103 women and 42 family members, met the inclusion criteria. Four main themes incorporating 13 subthemes were identified following synthesis: (1) Experiencing the unspeakable, (2) Loss and disruption, (3) Realigning old self and new self and the integrative theme of (4) Social context. The findings offer new insight into the unique experience of postpartum psychosis and demonstrate that recovery does not follow a linear path. To improve clinical outcomes, a more integrative and individualised approach is needed which incorporates long-term psychological and psychosocial support, and considers the needs of the family. Further areas for staff training, service development and future research are highlighted.

     

Oxidative stress: The core pathogenesis and mechanism of Alzheimer’s disease

As the number of patients with Alzheimer’s disease (AD) increases, it brings great suffering to their families and causes a heavy socioeconomic burden to society. A vast amount of funds and a mass of research have been devoted to elucidating the pathology of AD. However, the main pathogenesis is still elusive, and its mechanism is not completely clear. Research on the mechanisms of AD mainly focuses on the amyloid cascade, tau protein, neuroinflammation, metal ions, and oxidative stress hypotheses. Oxidative stress is as a bridge that connects the different hypotheses and mechanisms of AD. It is a process that causes neuronal damage and occurs in various pathways. Oxidative stress plays a critical role in AD and can even be considered a crucial central factor in the pathogenesis of AD. Previous reviews have also summarized the role of oxidative stress in AD, but these mainly review a specific signaling pathway. Taking oxidative stress as the central point, this review comprehensively expands on the roles of oxidative stress that are involved in the pathogenesis of AD. The vivid and easy-to-understand figures systematically clarify the connected roles of oxidative stress in AD and allow readers to further understand oxidative stress and AD.     

Empowerment in people with Parkinson’s disease: A scoping review and qualitative interview study

ObjectiveTo synthesize empowerment definitions in Parkinson’s disease (PD) literature and understand people with PD’s perspective on empowerment in the context of an existing empowerment conceptual model.MethodsThis mixed-methods study included a scoping review of PD empowerment literature and interviews with adults with PD. Five databases were searched for articles that defined empowerment concepts. We analyzed 1:1 semi-structured interviews on empowerment with people with PD. All data were analyzed using hybrid thematic analysis.ResultsEight of 242 records were included in this review. Empowerment is defined as an intrapersonal (e.g., personal control over oneself or healthcare) or interpersonal construct (e.g., person-centered care). Thirty-seven participants completed the interview. Participants perceived empowerment as a multifaceted concept that interacts with determinants and moderators from different ecological levels.ConclusionEmpowerment is a noteworthy multilevel and relational construct that can interplay with important health-related factors. The developed working conceptual model of empowerment can inform future studies to explore empowerment concepts in more depth and develop PD empowerment-based interventions.Practice implicationsThe empowerment definitions, indicators, determinants, and moderators identified in this study can help researchers, clinicians, and policymakers critically conceptualize empowerment and develop interventions to support people with PD.     

Does timing and sequencing of transitions to adulthood make a difference? stress, smoking, and physical activity among young australian women

The major changes of the transition to adulthood are argued to be stressful, and health-related behaviors such as smoking and physical activity may be adopted, consolidated, or abandoned at this time. On the other hand, research has suggested that the normative transitions of emerging adulthood, although involving considerable change, may be associated with low stress because they are perceived as both positive and normal at this life stage. This article examines relations between the timing and sequencing of life transitions and stress and health-related behaviors, focusing on the transition to young adulthood among Australian women. A total of 853 women aged 22 to 27 provided information about the timing and sequencing of 6 life transitions: moving out of home, stopping full-time education, starting full-time work, having the first live-in relationship, marriage, and motherhood—and stress, smoking, and physical activity. Most had moved out of home, stopped full-time education, and started full-time work, but only 14% had undertaken all 6 transitions. Overall, 70% of participants had made transitions “in order.” Overall, the findings suggest that the relations between timing and sequencing of transitions, and indicators of health, are moderate for smoking, but small for stress and for physical activity. These effects remained after controlling for socioeconomic status of the participants’families of origin. Matching current social norms for the timing and sequencing of life changes may be of less importance for women’s well-being than is commonly believed. Although the significant relations between early or “out of order” transitions and smoking are of concern, the smaller relations with stress and with sedentariness suggest that such transitions may have limited negative consequences, and support the view that individuals are active in choosing the life path that is appropriate for them and their circumstances.     

Designing assisted living technologies ‘in the wild’: preliminary experiences with cultural probe methodology

Background

Primary open-angle glaucoma (POAG) is one of the leading causes of blindness in the United States and worldwide. While lowering intraocular pressure (IOP) has been proven to be effective in delaying or preventing the onset of POAG in many large-scale prospective studies, one of the recent hot topics in glaucoma research is the effect of IOP fluctuation (IOP lability) on the risk of developing POAG in treated and untreated subjects.

Method

In this paper, we analyzed data from the Ocular Hypertension Treatment Study (OHTS) and the European Glaucoma Prevention Study (EGPS) for subjects who had at least 2 IOP measurements after randomization prior to POAG diagnosis. We assessed the interrelationships among the baseline covariates, the changes of post-randomization IOP over time, and the risk of developing POAG, using a latent class analysis (LCA) which allows us to identify distinct patterns (latent classes) of IOP trajectories.

Result

The IOP change in OHTS was best described by 6 latent classes differentiated primarily by the mean IOP levels during follow-up. Subjects with high post-randomization mean IOP level and/or large variability were more likely to develop POAG. Five baseline factors were found to be significantly predictive of the IOP classification in OHTS: treatment assignment, baseline IOP, gender, race, and history of hypertension. In separate analyses of EGPS, LCA identified different patterns of IOP change from those in OHTS, but confirmed that subjects with high mean level and large variability were at high risk to develop POAG.

Conclusion

LCA provides a useful tool to assess the impact of post-randomization IOP level and fluctuation on the risk of developing POAG in patients with ocular hypertension. The incorporation of post-randomization IOP can improve the overall predictive ability of the original model that included only baseline risk factors.

     

Mothers with intellectual disability,their experiences of maltreatment,and their children’s attachment representations: a small-group matched comparison study

Maternal intellectual disability (ID) is regarded a risk factor in child development, but there is no scientific evidence on maternal ID in relation to children’s attachment. Using a matched comparison design, a small group (n = 23) of mothers diagnosed with ID was studied to help fill this gap. Besides maternal ID, we examined the role of abuse/trauma/maltreatment (ATM) in the mothers’ biographies, along with potential confounds. Comparison group mothers (n = 25) had normal variations in intelligence and matched mothers with ID on residential area, income, child age, and sex. History of maternal ATM was assessed using a semi-structured interview and was found to be significantly more likely in the ID group mothers’ experience than the comparison group mothers. Children’s (M age = 77 months) attachment representations were assessed with the Separation Anxiety Test. Among children of mothers with ID, a substantial minority (35%) had a secure and the vast majority (>80%) an organized attachment representation. Mothers with ID who had suffered elevated ATM were significantly more likely to have children who were scored high on disorganization and insecurity. We discuss possible implications of our findings for societal considerations regarding parenting and child attachment in the context of parental ID status.     

Religion and healthy lifestyle behaviors among postmenopausal women: the women’s health initiative

Worship attendance has been associated with longer survival in prospective cohort studies. A possible explanation is that religious involvement may promote healthier lifestyle choices. Therefore, we examined whether attendance is associated with healthy behaviors, i.e. use of preventive medicine services, non-smoking, moderate drinking, exercising regularly, and with healthy dietary habits. The population included 71,689 post-menopausal women enrolled in the Women's Health Initiative observational study free of chronic diseases at baseline. Attendance and lifestyle behaviors information was collected at baseline using self-administered questionnaires. Healthy behaviors were modeled as a function of attendance using logistic regression. After adjustment for confounders, worship attendance (less than weekly, weekly, and more than weekly vs. never) was positively associated with use of preventive services [OR for mammograms: 1.34 (1.19, 1.51), 1.41 (1.26, 1.57), 1.33 (1.17, 1.52); breast self exams: 1.14 (1.02, 1.27), 1.33 (1.21, 1.48), 1.25 (1.1, 1.43); PAP smears: 1.22 (1.01, 1.47-weekly vs. none)]; non-smoking: [1.41 (1.35, 1.48), 1.76 (1.69, 1.84), 2.27 (2.15, 2.39)]; moderate drinking [1.35 (1.27, 1.45), 1.60 (1.52, 1.7), 2.19 (2.0, 2.4)]; and fiber intake [1.08 (1.03, 1.14), 1.16 (1.11, 1.22), 1.31 (1.23, 1.39), respectively], but not with regular exercise or with lower saturated fat and caloric intake. These findings suggest that worship attendance is associated with certain, but not all, healthy behaviors. Further research is needed to get a deeper understanding of the relationship between religious involvement and healthy lifestyle behaviors and of the inconsistent patterns in this association.     

Behcet’s disease: epidemiology,clinical manifestations,and diagnosis

Introduction: Behcet’s Disease (BD) is classified among vasculitides. The aim of this review was to put together different known reports in order to help the reader to better understand the disease, to avoid the frequent misdiagnosis, and to decide the best treatment.

Areas covered: a) Epidemiology: BD is rare, and is seen along the Silk Road, from 20 to 420/100,000 in Turkey and 80/100,000 in Iran, to 0.64/100,000 in the UK. b) Clinical manifestations: oral aphthosis is seen in more than 95% of patients, genital aphthosis (60–90%), skin (pseudofolliculitis/erythema nodosum, 40–90%), eyes (uveitis/retinal vasculitis, 45–90%), gastrointestinal (diarrhea/hemorrhage/perforation/pain, 4–38%), vascular (venous/arterial thrombosis, aneurysm, 2.2–50%), neurological (all kinds, especially meningo-encephalitis, 2.3–38.5%), and articular (arthralgia/arthritis/ankylosing spondylitis, 11.6–93%). c) Pathergy test is positive in some patients: 8.6% (in India) to 70.7% (in China). This data was extracted from the five nationwide surveys and the largest case series from BD conference reports and a Pubmed search.

Expert commentary: Diagnosis is clinical but classification/diagnosis criteria may help. The best criteria for BD is the International Criteria for Behcet’s Disease (ICBD). BD is a multisystem disease progressing by attacks and remissions. Each attack may resemble the preceding or it may be different in duration, severity, and the systems involved.     

How do patients with rheumatic disease experience their relationship with their doctors? A qualitative study of experiences of stress and support in the doctor-patient relationship

This study is evaluated what patients with rheumatic disease perceive as important in their medical encounters. We interviewed two groups of patients: one with a well-defined inflammatory condition (rheumatoid arthritis (RA) or ankylosing spondylitis) (n = 12) and one with non-inflammatory widespread chronic pain such as fibromyalgia (n = 14). Both groups focused on their relationship to their doctor. Two central themes emerged as of importance: 'to be seen' and 'to be believed'. However, these themes had different connotations for the two groups. For the patients with inflammatory conditions, 'to be seen' implied being seen as an individual and not as a mere diagnosis, and 'to be believed' as far as pain and suffering were concerned. For patients with non-inflammatory chronic pain 'to be seen' and 'to be believed' primarily implied being able to obtain a useful somatic diagnosis. Practical implications of these findings are discussed.     

Oxidative stress and the pathogenesis of scleroderma: the Murrell’s hypothesis revisited

Systemic sclerosis (SSc, scleroderma) is a devastating, immune-mediated, multisystem disorder characterized by microvasculature damage, circulating autoantibodies, and fibroblast activation, leading to massive fibrosis of skin, vessels, muscles, and visceral organs. Scleroderma causes disability and death as the result of end-stage organ failure. At present, no specific diagnostic nor therapeutic tools are available to handle the disease. In spite of significant effort, the etiology and pathogenesis of SSc remain obscure and, consequently, the disease outcome is unpredictable. Several years ago, Murrell suggested a unifying hypothesis linking the pathogenesis of scleroderma to the generation of a large excess of reactive oxygen species. This hypothesis has been substantiated by several reports indicating the presence of an abnormal redox state in patients with scleroderma. This review will summarize the available evidence supporting the link between free radicals and the main pathological features of scleroderma.     

Living with huntington’s disease: illness perceptions,coping mechanisms,and spouses’ quality of life

Chronic illness not only affects the life of those suffering from Huntington’s disease but also threatens the quality of life (QOL) of their spouses. In this study, we focus on Huntington’s disease (HD). The impact of HDonthe QOL of spouses has been hardly studied from a behavioral medicine or health psychology perspective. We hypothesize that spouses’ illness perceptions and coping mechanisms will contribute significantly to the prediction of their QOL. Illness perceptions, coping mechanisms, and the QOL of 90 spouses ofpatients with HD were assessed by meansof the Illness Perception Questionnaire, the COPE, and the Medical Outcome Study 36-item Short Form Health Survey, respectively. After controlling for demographic and illness-related variables, coping mechanisms explained a significant amount of variance of spouses’ role functioning. Given our results, more empirical and longitudinal research is justified on coping mechanisms and illness perceptions of spouses living with Huntington’s disease.