This study aimed to assess the health-related quality of life and identify its associated factors in women with endometriosis. A cross-sectional correlation study design and convenience sampling were conducted in the gynecological outpatient clinic of a teaching hospital in northern Taiwan. A total of 216 women with endometriosis were recruited. The data were collected using structured questionnaires and analyzed using descriptive and inferential statistics. Participants reported a moderate level of health-related quality of life. The most significant impact of endometriosis on health-related quality of life was emotional well-being, followed by feeling of control or powerless, pain, social support, and self-image. Educational attainment, menstrual cycle, period length, perceived menstrual flow, symptom distress, and self-management strategies explained 66% of the variance in health-related quality of life. Factors influencing health-related quality of life in women with endometriosis play a key role in promoting women\'s well-being. Interventions based on these related factors should be developed and taken into practice to effectively manage the disease-related symptoms for women with endometriosis and thereby improve their overall health-related quality of life.

How PWUD (people who use drugs) live under drug governance is an important research question. This study adopts a qualitative research method to explore how PWUD in China self-manage after perceiving the dilemma of incomplete citizenship and the social pressure brought by drug control arrangements. Through analysis of 130 PWUD\'s files and in-depth interviews with 10 interviewees (from the 24 preliminary interviews), this study found that PWUD developed action strategies of hidden mobility (spatial isolation), disconnection of past experiences (time isolation), instrumental actions, as well as narrative strategies of reframing themselves as ordinary citizens with attempts of reversing identity disadvantages. Further, PWUD\'s self-management strategies manifest as a disengagement model in which the actors (PWUD, not rehabilitation agencies) do not intend to develop integrative positive identities through dispersed, practiced behavioral strategies, but attempt to return to pre-addiction, non-socially exclusionary citizenship experiences. The disengagement model and its negative effect on PWUD\'s social integration help us reflect on the current implementation of rehabilitation projects and institutional settings of drug governance.

BACKGROUND: Major life changing events such as the COVID-19 pandemic may have major impact on one\'s health and general well-being. This study aimed to determine the prevalence and predictive factors, including gender specific differences, of Complementary Medicine (CM) use (including CM consultations, self-care management and self-help techniques) during the first wave of the COVID-19 pandemic in 2020 in the Netherlands.
METHODS: CM use was studied among a random representative sample (n = 1004) of the adult Dutch population using an online survey conducted from 22-27 May 2020. The survey included a modified version of I-CAM-Q and additional questions on demographic characteristics, reasons for CM use, perceived effectiveness and side effects.
RESULTS: 68.0% of the participants reported to have used CM (CM consultations (13.3%), self-management strategies (59.4%), self-help techniques (30.0%)). Most frequently reported reason of CM use was to improve general well-being (61.6%), prevention and/or treatment of COVID-19 was only reported by 10%. Perceived effectiveness of CM was high and number of experienced side effects low. Being a women, worried to get infected with COVID-19, higher education and living in northern/ middle region of the Netherlands were predictive factors to use CM.
CONCLUSIONS: In the Netherlands, specific groups (e.g. women/ highly educated) use CM, mainly to improve general wellbeing, and seem to benefit of it during the first months of the pandemic. The high perceived effectiveness and low reporting of side effects should encourage medical professionals and policy makers for more openness towards considering CM as being part of an integrative approach to public health in times life changing events occur.

Knee pain is an early sign of later incident radiographic knee osteoarthritis (OA). However, the prevalence of knee pain in the general population is unknown. Additionally, it is unknown how people with knee pain choose to self-manage the condition and if the perception of the illness affects these choices. In this study, 9086 citizens between 60-69 years old in the municipality of Frederiksberg, Copenhagen, Denmark, were surveyed, of which 4292 responded. The prevalence of knee pain was estimated, and associations between illness perceptions (brief illness perception questionnaire [B-IPQ]), self-management strategies, and knee symptoms were assessed. The prevalence of knee pain was 21.4% of which 40.5% reported to use no self-management strategies (non-users). These non-users perceived their knee pain as less threatening and reported less severe symptoms than users of self-management strategies. Further, we found that a more positive illness perception was associated with less severe knee symptoms. In conclusion, among Danes aged 60-69 years, the knee pain prevalence is 21.4%, of which 40.5% use no treatment and perceive the condition as non-threatening. These non-users with knee pain represent a subpopulation being at increased risk of developing knee OA later in life, and there is a potential preventive gain in identifying these persons.

The use of adequate self-management strategies for people with chronic obstructive pulmonary disease (COPD) may increase the level of physical activity (PA), improve health-related quality of life (HRQoL) and reduce healthcare use. Whether web-based support in addition to prompts (email and SMS) could be used to promote self-management strategies to facilitate behaviour change in people with COPD is not clear. This clinical trial aims to generate evidence on the effect of a web-based solution, the COPD Web, in a cohort of people with COPD in a primary healthcare context.
The overall design is a pragmatic randomised controlled trial with preassessments and postassessments (3 and 12 months) and an implementation and user experience evaluation. People with a diagnosis of COPD, treated in primary healthcare will be eligible for the study. A total of 144 participants will be enrolled by healthcare professionals at included primary healthcare units and, after fulfilled baseline assessments, randomised to either control or intervention group. All participants will receive usual care, a pedometer and a leaflet about the importance of PA. Participants in the intervention will, in addition, get access to the COPD Web, an interactive self-managed website that aims to support people with COPD in self-management strategies. They will also continuously get support from prompts with a focus on behaviour change.The effect on participants\' PA, dyspnoea, COPD-related symptoms, HRQoL and health economics will be assessed using accelerometer and questionnaires. To identify enablers and barriers for the use of web-based support to change behaviour, semistructured interviews will be conducted in a subgroup of participants at the 3 months follow-up.
Ethical approval has been received from the Regional Ethical Review Board in Umeå, Sweden. Dnr 2018-274-31. Findings will be presented at conferences, submitted for publication in peer-reviewed journals and presented to the involved healthcare professionals, participants and patient organisations.
NCT03746873.

BACKGROUND: Acute intermittent porphyria (AIP) is an inherited metabolic disease with low clinical penetrance caused by mutations in the hydroxymethylbilane (HMBS) gene. Although most patients experience little or no symptoms, serious attacks may include excruciating pain, severe electrolyte disturbances, paresis, and respiratory failure. Several drugs and lifestyle factors are potential attack inducers and avoiding known triggers is important to avoid symptomatic disease in both patients and genetically predisposed carriers. Our aim in this study was to describe self-efficacy and self-management strategies in self-reported symptomatic and asymptomatic HMBS mutation carriers, and to elucidate motives for predictive genetic testing.
METHODS: This is a cross-sectional retrospective survey with postal questionnaires. We received responses from 140 HMBS carriers for the general self-efficacy scale (GSES), study-specific questions about symptoms, self-management strategies and motives for genetic testing and satisfaction with the genetic counseling scale (SCS).
RESULTS: The results indicated high levels of self-efficacy in these Norwegian HMBS mutation carriers. Both self-reported symptomatic and asymptomatic cases recorded changes in behavior after diagnosis, such as avoiding possible triggering drugs and aspiring recommended eating habits. They were in general satisfied with the genetic counseling they had received. The possibility to prevent disease and learn about the risk of their children was their most important motives to undergo genetic testing.
CONCLUSIONS: This study indicates that continuing to provide information, counseling and education is beneficial in AIP, and that HMBS mutation carriers, both those self-assessed as asymptomatic and as symptomatic, are using their knowledge to avoid triggering factors.

OBJECTIVE: To assess prevalence and frequency of use of self-management strategies among female cancer survivors and to empirically identify categories of self-management.
METHODS: Female cancer survivors (N=673, mean age 51 years; >90% with breast cancer; M=5 years since diagnosis) completed an Internet survey indicating the frequency (never to very often) with which they had employed each strategy since diagnosis. The survey included commonly assessed self-management strategies, such as complementary and alternative medicine (CAM), religious practices, and exercise. Additionally we assessed the use of further strategies identified from recommendations of cancer survivors shared in Internet forums.
RESULTS: A principal component analysis yielded five categories: More Conscious Living, Turning to Family/Friends, CAM, Religious/Spiritual Practices, and Exercise. Prevalence rates of commonly measured strategies like CAM, Religious Practices, and Exercise were similar to previous studies. Considering frequency of use, however, revealed that only few participants reported frequent use of these strategies (<10%). In contrast, about half of the women (>50%) reported Turning to Family/Friends and engaging in More Conscious Living strategies (very) often.
CONCLUSIONS: Relying on prevalence assessments of commonly investigated behaviors such as CAM or exercise may overestimate their use among cancer survivors. Cancer survivors engage in a wide range of self-management strategies. Encouraging living more consciously and cultivating social relations might be of greater relevance compared with CAM use or exercise.

The aim of this study was to identify self-management strategies that can be used in a workplace setting by workers living with depression and anxiety.
A two-round Delphi study was conducted among three panels of experts: (1) employees living with anxiety or depression (n = 31); (2) managers of employees living with anxiety or depression (n = 12); and (3) researchers with expertise in workplace mental health (n = 15). Participants had to indicate whether each of 60 self-management strategies was applicable at work, and how useful each was for managing their symptoms while working. They could also reformulate or add strategies that were then evaluated in the second round.
A total of 60 existing and new self-management strategies were retained following the two rounds. Most useful strategies refer to the ability to set boundaries, maintain work-life balance, identify sources of stress and create positive relationships with supervisor and colleagues. Panels differed in their assessment of the usefulness of strategies focusing on employees\' empowerment.
Most participants were from Canada, limiting the generalizability of the results.
The self-management strategies identified in this study should be included in programs focusing on mental health at work and disseminated to employees living with depression and anxiety. Managers should take employee\'s perspective into account when searching for solutions to help them. Future research should use an inductive approach to identify strategies that are specifically related to the workplace setting. Quantitative studies are also needed to evaluate the effect of such strategies on work functioning.

Promoting physical activity (PA) and reducing sedentary behaviour (SB) may exert beneficial effects on the older adult population, improving behavioural, functional, health and psychosocial outcomes in addition to reducing health, social care and personal costs. This paper describes the planned economic evaluation of SITLESS, a multicountry three-armed pragmatic randomised controlled trial (RCT) which aims to assess the short-term and long-term effectiveness and cost-effectiveness of a complex intervention on SB and PA in community-dwelling older adults, based on exercise referral schemes enhanced by a group intervention providing self-management strategies to encourage lifestyle change.
A within-trial economic evaluation and long-term model from both a National Health Service/personal social services perspective and a broader societal perspective will be undertaken alongside the SITLESS multinational RCT. Healthcare costs (hospitalisations, accident and emergency visits, appointment with health professionals) and social care costs (eg, community care) will be included in the economic evaluation. For the cost-utility analysis, quality-adjusted life-years will be measured using the EQ-5D-5L and capability well-being measured using the ICEpop CAPability measure for Older people (ICECAP-O) questionnaire. Other effectiveness outcomes (health related, behavioural, functional) will be incorporated into a cost-effectiveness analysis and cost-consequence analysis.The multinational nature of this RCT implies a hierarchical structure of the data and unobserved heterogeneity between clusters that needs to be adequately modelled with appropriate statistical and econometric techniques. In addition, a long-term population health economic model will be developed and will synthesise and extrapolate within-trial data with additional data extracted from the literature linking PA and SB outcomes with longer term health states.Methods guidance for population health economic evaluation will be adopted including the use of a long-time horizon, 1.5% discount rate for costs and benefits, cost consequence analysis framework and a multisector perspective.
The study design was approved by the ethics and research committee of each intervention site: the Ethics and Research Committee of Ramon Llull University (reference number: 1314001P) (Fundació Blanquerna, Spain), the Regional Committees on Health Research Ethics for Southern Denmark (reference number: S-20150186) (University of Southern Denmark, Denmark), Office for Research Ethics Committees in Northern Ireland (ORECNI reference number: 16/NI/0185) (Queen\'s University of Belfast) and the Ethical Review Board of Ulm University (reference number: 354/15) (Ulm, Germany). Participation is voluntary and all participants will be asked to sign informed consent before the start of the study.This project has received funding from the European Union\'s Horizon 2020 research and innovation programme under grant agreement number 634 270. This article reflects only the authors\' view and the Commission is not responsible for any use that may be made of the information it contains.The findings of the study will be disseminated to different target groups (academia, policymakers, end users) through different means following the national ethical guidelines and the dissemination regulation of the Horizon 2020 funding agency.Use of the EuroQol was registered with the EuroQol Group in 2016.Use of the ICECAP-O was registered with the University of Birmingham in March 2017.
NCT02629666; Pre-results.

Older adults are the fastest growing segment of the world\'s population. Recent evidence indicates that excessive sitting time is harmful to health, independent of meeting the recommended moderate to vigorous physical activity (PA) guidelines. The SITLESS project aims to determine whether exercise referral schemes (ERS) can be enhanced by self-management strategies (SMSs) to reduce sedentary behaviour (SB), increase PA and improve health, quality of life and function in the long term, as well as psychosocial outcomes in community-dwelling older European citizens from four countries, within a three-armed pragmatic randomised controlled trial, compared with ERS alone and also with general recommendations about PA.
A total of 1338 older adults will be included in this study, recruited from four European countries through different existing primary prevention pathways. Participants will be randomly allocated into an ERS of 16 weeks (32 sessions, 45-60 min per session), ERS enhanced by seven sessions of SMSs and four telephone prompts, or a control group. Outcomes will be assessed at baseline, month 4 (end of ERS intervention), month 16 (12 months post intervention) and month 22 (18 months post intervention). Primary outcomes will include measures of SB (time spent sedentary) and PA (counts per minute). Secondary outcomes will include muscle and physical function, health economics\' related outcomes, anthropometry, quality of life, social networks, anxiety and depressive symptoms, disability, fear of falling, executive function and fatigue. A process evaluation will be conducted throughout the trial. The full analysis set will follow an intention-to-treat principle and will include all randomised participants for whom a baseline assessment is conducted. The study hypothesis will be tested with mixed linear models with repeated measures, to assess changes in the main outcomes (SB and PA) over time (baseline to month 22) and between study arms.
The findings of this study may help inform the design and implementation of more effective interventions to reduce SB and increase PA levels, and hence improve long-term health outcomes in the older adult population. SITLESS aims to support policy-makers in deciding how or whether ERS should be further implemented or restructured in order to increase its adherence, impact and cost-effectiveness.
ClinicalTrials.gov, NCT02629666 . Registered 19 November 2015.