Perceptions and experiences of lifestyle interventions in women with polycystic ovary syndrome (PCOS), as a management strategy for symptoms of PCOS

Background: The international clinical practice guidelines for PCOS emphasize diet and exercise as first-line management of clinical signs and symptoms. This study aimed to describe the patterns, perceptions and experiences of lifestyle interventions for women in the community with PCOS. Method: An electronic survey of 493 members of two PCOS consumer support groups, collected by cloud-based Survey Monkey, described women’s types and patterns of diet and exercise, experiences and perceptions of effectiveness. Women were recruited from the Polycystic Ovary Association of Australia (POSAA) and from the Facebook group, PCOS University Research Group. Associations between participants perceptions of effectiveness, and diet types and exercise patterns were assessed using logistic regression. Response bias for the POSAA group was assessed with a continuum of resistance model. Results: 91% of POSAA members and 311 Facebook group members aged 16–50 years responded to the survey. Nearly all women reported adjusting their dietary and exercise practices with the aim to improve their health and/ or PCOS (82% and 73% respectively), however less than 13% reported achievement of health goals (12.2% and 8.1% respectively). Low carbohydrate, high protein diets, and vigorous activity were associated with self-perceived effectiveness (r.0.16, p<0.01; r.0.15 p<0.01 and r.0.2 p<0.01 respectively). Barriers for lifestyle interventions included psychosocial factors. Response bias was not assessed for the Facebook group, however self-reported PCOS aligned with prevalence of clinical phenotypes and suggests results are generalizable to clinical populations of women with PCOS, who are responsible for self-directing and administering lifestyle interventions to manage their PCOS. Conclusions: Perceptions of effectiveness for lifestyle interventions by women with PCOS may be complicated by a lack of rigorous evidence. The strength of recommendations in clinical practice guidelines may be enhanced by clinical trials investigating flexible and feasible lifestyle interventions for women in the community with PCOS

A survey of the use of complementary medicine by a self-selected community group of Australian women with polycystic ovary syndrome

Polycystic ovary syndrome (PCOS) is a complex reproductive endocrinopathy affecting up to 20% of reproductive aged women. Whilst there are effective pharmaceutical treatment options, women with PCOS have expressed a strong desire for alternatives. This study investigates the use and attitudes of women with PCOS towards complementary medicine (CM). Methods: Women as members of PCOS support groups responded to an anonymous on-line survey which examined rates and patterns of use for CM's, areas of health for use, perceptions of effectiveness, safety and demographic features. Data collection targeted women with PCOS using two consumer support groups. The first group self-selected following direct email to members of a land based consumer support group, the Polycystic Ovary Syndrome Association of Australia (POSAA). The second sample was generated through the electronic social network Facebook, using a snowball technique. Two surveys, identical in content, were collected by cloud based Survey Monkey. Data were described and associations between the variables, 'reasons for use' and 'perceptions of effectiveness' were explored. Non-response bias was assessed using a continuum of resistance model. Results: 493 women participated in the study; 91.1% response rate from the POSAA group. Over 70% reported use of complementary medicine, usually nutritional and herbal supplements and 76.6% of CM users reported consultation with a complementary practitioner. Many participants were using CM to treat PCOS however most were using it to concurrently treat a range of health conditions, describing women's desire for more than single symptom management. Disadvantages for CM use were cited by 71% of respondents. Women using complementary medicine with specific treatment goals in mind reported greater self-perceived effectiveness, suggesting that informed use may improve women's satisfaction with CM. Adverse reactions were reported by 12.2% of women and the need for further research into adverse reactions for CM's was identified. Demographic and PCOS characteristics were similar to clinical populations of PCOS and non-response bias was shown as not significant. Conclusion: This study describes the prevalence of use for complementary medicine by women with PCOS as over 70% and adds to our understanding of women's experiences with CM and their motivations for use of CM

A cross-sectional study of traditional Chinese medicine practitioner’s knowledge, treatment strategies and integration of practice of chronic pelvic pain in women

Background: Chronic pelvic pain (CPP) in women is persistent, intermittent cyclical and non-cyclical lower abdominal pain, lasting for more than 6 months. Traditional Chinese Medicine (TCM) is a popular treatment option for women’s health conditions, but little is known about how treatment for CPP is delivered by TCM practitioners. The aim of this survey was to explore practitioners understanding and treatment of women with CPP, and how they integrate their management and care into the health care system. Method: An online cross-sectional survey of registered TCM practitioners in Australia and New Zealand between May and October 2018. Survey domains included treatment characteristics (e.g. frequency), evaluation of treatment efficacy, referral networks, and sources of information that informed clinical decision making. Results: One hundred and twenty-two registered TCM practitioners responded to this survey, 91.7% reported regular treatment of women with CPP. Treatment decisions were most-often guided by a combination of biomedical and TCM diagnosis (77.6%), and once per week was the most common treatment frequency (66.7%) for acupuncture. Meditation (63.7%) and dietary changes (57.8%) were other commonly used approaches to management. The effectiveness of treatment was assessed using multiple approaches, most commonly pain scales, (such as the numeric rating scale) and any change in use of analgesic medications. Limitations to TCM treatment were reported by over three quarters (83.7%) of practitioners, most commonly due to cost (56.5%) and inconvenience (40.2%) rather than safety or lack of efficacy. Sources informing practice were most often Integration within the wider healthcare system was common with over two thirds (67.9%) receiving referrals from health care providers. Conclusion: TCM practitioners seeing women with various CPP symptoms, commonly incorporate both traditional and modern diagnostic methods to inform their treatment plan, monitor treatment progress using commonly accepted approaches and measures and often as a part of multidisciplinary healthcare for women with CPP

The cost of illness and economic burden of endometriosis and chronic pelvic pain in Australia : a national online survey

Introduction: Endometriosis has a significant cost of illness burden in Europe, UK and the USA, with the majority of costs coming from reductions in productivity. However, information is scarce on if there is a differing impact between endometriosis and other causes of chronic pelvic pain, and if there are modifiable factors, such as pain severity, that may be significant contributors to the overall burden. Methods: An online survey was hosted by SurveyMonkey and the link was active between February to April 2017. Women aged 18–45, currently living in Australia, who had either a confirmed diagnosis of endometriosis via laparoscopy or chronic pelvic pain without a diagnosis of endometriosis were included. The retrospective component of the WERF EndoCost tool was used to determine direct healthcare costs, direct non-healthcare costs (carers) and indirect costs due to productivity loss. Estimates were extrapolated to the Australian population using published prevalence estimates. Results: 407 valid responses were received. The cost of illness burden was significant in women with chronic pelvic pain (Int $16,970 to$ 20,898 per woman per year) irrespective of whether they had a diagnosis of endometriosis. The majority of costs (75–84%) were due to productivity loss. Both absolute and relative productivity costs in Australia were higher than previous estimates based on data from Europe, UK and USA. Pain scores showed the strongest relationship to productivity costs, a 12.5-fold increase in costs between minimal to severe pain. The total economic burden per year in Australia in the reproductive aged population (at 10% prevalence) was 6.50 billion Int $. Conclusion: Similar to studies in European, British and American populations, productivity costs are the greatest contributor to overall costs. Given pain is the most significant contributor, priority should be given to improving pain control in women with pelvic pain

Allied health and complementary therapy usage in Australian women with chronic pelvic pain : a cross-sectional study

Background: Chronic pelvic pain (CPP) causes non-cyclical pelvic pain, period pain, fatigue and other painful symptoms. Current medical and surgical management strategies are often not sufficient to manage these symptoms and may lead to uptake of other therapies. Aims: To determine the prevalence of allied health (AH) and complementary therapy (CM) use, the cost burden of these therapies and explore predictive factors for using allied health or complementary medicines. Materials and methods: An online cross-sectional questionnaire using the WERF EndoCost tool was undertaken between February to April 2017. People were eligible to participate in the survey if they were aged 18–45, living in Australia and had chronic pelvic pain. Results: From 409 responses, 340/409 (83%) of respondents reported a diagnosis of endometriosis. One hundred and five (30%) women with self-reported endometriosis, and thirteen (18%) women with other forms of CPP saw at least one AH or CM practitioner in the previous two months, with physiotherapists and acupuncturists the most common. Women who accessed CM or AH services spent an average of $480.32 AUD in the previous two months. A positive correlation was found between education and number of AH or CM therapies accessed in the past two months (p<0.001) and between income level and number of therapists (p=0.028). Conclusions: Women with CPP commonly access AH and CM therapies, with a high out of pocket cost. The high cost and associations with income and education levels may warrant a change to policy to improve equitable access to these services

Endometriosis and chronic pelvic pain have similar impact on women, but time to diagnosis is decreasing : an Australian survey

Chronic pelvic pain (CPP) affects a significant number of women worldwide. Internationally, people with endometriosis report significant negative impact across many areas of their life. We aimed to use an online survey using the EndoCost tool to determine if there was any difference in the impact of CPP in those with vs. those without a confirmed diagnosis of endometriosis, and if there was any change in diagnostic delay since the introduction of clinical guidelines in 2005. 409 responses were received; 340 with a diagnosis of endometriosis and 69 with no diagnosis. People with CPP, regardless of diagnosis, reported moderate to severe dysmenorrhea and non-cyclical pelvic pain. Dyspareunia was also common. Significant negative impact was reported for social, academic, and sexual/romantic relationships in both cohorts. In the endometriosis cohort there was a mean diagnostic delay of eight years, however there was a reduction in both the diagnostic delay (p < 0.001) and number of doctors seen before diagnosis (p < 0.001) in those presenting more recently. Both endometriosis and CPP have significant negative impact. Whilst there is a decrease in the time to diagnosis, there is an urgent need for improved treatment options and support for women with the disease once the diagnosis is made

Sensitivity to Change (Responsiveness) and Minimal Important Differences of the LupusQoL in patients with Systemic Lupus Erythematosus

Objective: The LupusQoL is a reliable and valid health-related quality of life (HRQoL) measure for adults with systemic lupus erythematosus (SLE). This study evaluates the responsiveness and minimal important differences (MID) for the eight LupusQoL domains. Methods: Patients experiencing a flare were recruited from nine UK centres. At each of the ten monthly visits, HRQoL (LupusQoL, SF-36), global rating of change (GRC) and disease activity (DA) using the BILAG-2004 index were assessed. The responsiveness of the LupusQoL and the SF-36 was evaluated primarily when patients reported an improvement or deterioration on the GRC scale and, secondly, with changes in physician-reported DA. MIDs were estimated as mean changes when minimal change was reported on the GRC scale. Results: 101 patients were recruited. For all LupusQoL domains, mean HRQoL worsened when patients reported deterioration and improved when patients reported an improvement in GRC; SF-36 domains showed comparable responsiveness. Improvement in some domains of the LupusQoL/SF-36 was observed with a decrease in DA but when DA worsened, there was no significant change. LupusQoL MID estimates for deterioration ranged from -2.4 to -8.7 and for improvement, 3.5 to 7.3; for the SF-36, -2.0 to -11.1, and 2.8 to 10.9 respectively. Conclusion: All LupusQoL domains are sensitive to change with patient-reported deterioration or improvement in health status. For DA, some LupusQoL domains showed responsiveness when there was improvement but none for deterioration. LupusQoL items were derived from SLE patients and provide the advantage of disease-specific domains, important to them, not captured by the SF-36

An intelligent insole system with personalised digital feedback reduces foot pressures during daily life: An 18-month randomised controlled trial

Aims: High plantar pressure is a major risk factor in the development of diabetic foot ulcers (DFUs) and recent evidence shows plantar pressure feedback reduces DFU recurrence. This study investigated whether continued use of an intelligent insole system by patients at high-risk of DFUs causes a reduction in plantar pressures. Methods: Forty-six patients with diabetic peripheral neuropathy and previous DFU were randomised to intervention (IG) or control groups (CG). Patients received an intelligent insole system, consisting of pressure-sensing insoles and digital watch. Patients wore the device during all daily activity for 18-months or until ulceration, and integrated pressure was recorded continuously. The device provided high-pressure feedback to IG only via audio-visual-vibrational alerts. High-pressure parameters at the whole foot, forefoot and rearfoot were compared between groups, with multilevel binary logistic regression analysis. Results: CG experienced more high-pressure bouts over time than IG across all areas of the foot (P 16 weeks of wearing the device. Conclusions: Continuous plantar pressure feedback via an intelligent insole system reduces number of bouts of high-pressure in patients at high-risk of DFU. These findings suggest that patients were learning which activities generated high-pressure, and pre-emptively offloading to avoid further alerts

Research on the Premotor Symptoms of Parkinson’s Disease: Clinical and Etiological Implications

Background: The etiology and natural history of Parkinson’s disease (PD) are not well understood. Some non-motor symptoms such as hyposmia, rapid eye movement sleep behavior disorder, and constipation may develop during the prodromal stage of PD and precede PD diagnosis by years. Objectives: We examined the promise and pitfalls of research on premotor symptoms of PD and developed priorities and strategies to understand their clinical and etiological implications. Methods: This review was based on a workshop, Parkinson’s Disease Premotor Symptom Symposium, held 7–8 June 2012 at the National Institute of Environmental Health Sciences in Research Triangle Park, North Carolina. Discussion: Research on premotor symptoms of PD may offer an excellent opportunity to characterize high-risk populations and to better understand PD etiology. Such research may lead to evaluation of novel etiological hypotheses such as the possibility that environmental toxicants or viruses may initiate PD pathogenesis in the gastrointestinal tract or olfactory bulb. At present, our understanding of premotor symptoms of PD is in its infancy and faces many obstacles. These symptoms are often not specific to PD and have low positive predictive value for early PD diagnosis. Further, the pathological bases and biological mechanisms of these premotor symptoms and their relevance to PD pathogenesis are poorly understood. Conclusion: This is an emerging research area with important data gaps to be filled. Future research is needed to understand the prevalence of multiple premotor symptoms and their etiological relevance to PD. Animal experiments and mechanistic studies will further understanding of the biology of these premotor symptoms and test novel etiological hypothesis. Citation: Chen H, Burton EA, Ross GW, Huang X, Savica R, Abbott RD, Ascherio A, Caviness JN, Gao X, Gray KA, Hong JS, Kamel F, Jennings D, Kirshner A, Lawler C, Liu R, Miller GW, Nussbaum R, Peddada SD, Comstock Rick A, Ritz B, Siderowf AD, Tanner CM, Tröster AI, Zhang J. 2013. Research on the premotor symptoms of Parkinson’s Disease: clinical and etiological implications. Environ Health Perspect 121:1245–1252; http://dx.doi.org/10.1289/ehp.130696