scholarly journals Self-management strategies amongst Australian women with endometriosis: a national online survey

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Mike Armour ◽  
Justin Sinclair ◽  
K. Jane Chalmers ◽  
Caroline A. Smith
Keyword(s):  
Online Survey ◽  
Management Strategies ◽  
Self Management

20 International online survey of 1162 individuals with functional neurological disorder: demographics, symptom comorbidities, self- management strategies, and illness beliefs

2020 ◽  
Vol 91 (8) ◽  
pp. e16.1-e16
Author(s):  
Matthew Butler ◽  
Mathieu Seynaeve ◽  
Susannah Pick ◽  
James Rucker ◽  
Timothy Nicholson
Keyword(s):  
Neurological Disorder ◽  
Online Survey ◽  
Management Strategies ◽  
Self Management ◽  
Patient Questionnaire ◽  
Symptom Duration ◽  
Illness Beliefs ◽  
Alternative Treatments ◽  
Wide Range ◽  
Functional Neurological Disorder

AimsFunctional neurological disorder (FND) is common and often severe. It is poorly understood, and there have been no international large-scale studies of self- management and illness beliefs in FND. We created a patient questionnaire to assess FND demographics, symptom comorbidity, self-management strategies (particularly in relation to prohibited substances), views on novel treatments, and illness beliefs.MethodsThe questionnaire was shared open access over a three-week period.Participants were recruited internationally through social media and patient groups. RESULTS: In total, 1162 respondents from 16 countries took the survey. Of these, 98% reported a formal diagnosis of FND from a consultant neurologist or other suitably trained clinician. Females constituted 86% of respondents, with an average age of 41.7 years (SD=12.50). Mean symptom duration was 7.69 years (SD=9.37) and average time from diagnosis was 2.24 years (SD=3.35), indicating a diagnostic lag of over 5 years. Symptom comorbidity was very high, with respondents reporting current: seizures (50%), gait disturbance (76%), loss of balance (77%), tremors (61%), muscle jerks/spasms (65%), altered sensations (79%), speech difficulties (65%), memory problems (80%), fatigue (93%), and headache (70%). Current psychiatric comorbidities – depression (43%), anxiety (51%), panic (20%), and PTSD (22%) - were also common. Illness beliefs varied, with respondents agreeing most strongly that FND is a combination of physical and stress/trauma-related factors. Respondents rated FND as having a severe effect on their life, with little control felt over their symptoms. Respondents had received a wide range of medical interventions, and many had tried alternative treatments. Prohibited substances such as cannabis, ketamine, and psychedelics had been used by 15% of respondents, with the majority experiencing no or minimal physical (90%) and psychological (95%) sequelae. Many respondents reported that they would be willing to try medically supervised psychedelic therapy if it was found to be safe and effective.ConclusionsThis large international online survey of FND patients indicated a striking co-occurrence of multiple symptoms. As expected, respondents reported that FND severely impacted on their lives, and many had lived with symptoms, which are not well managed by current medical therapies, for years. There was interest in novel putative treatments, such as medically supervised psychedelic therapies, which indicates a strong need to investigate alternative treatments for this poorly served patient group.

scholarly journals The Pain at Work Toolkit for Employees with Chronic or Persistent Pain: A Collaborative-Participatory Study

Healthcare ◽  
2021 ◽  
Vol 10 (1) ◽  
pp. 56
Author(s):  
Holly Blake ◽  
Sarah Somerset ◽  
Sarah Greaves
Keyword(s):  
Participatory Design ◽  
Online Survey ◽  
Management Strategies ◽  
Work Capacity ◽  
Persistent Pain ◽  
Self Management ◽  
Evidence Based ◽  
Or Education ◽  
Management Tools ◽  
Stakeholder Consultation

Self-management tools for people with chronic or persistent pain tend to focus on symptom reporting, treatment programmes or exercise and do not address barriers to work, facilitators of work ability, or workplace pain self-management strategies. We developed the Pain at Work (PAW) toolkit, an evidence-based digital toolkit to provide advice on how employees can self-manage their pain at work. In a collaborative-participatory design, 4-step Agile methodology (N = 452) was used to co-create the toolkit with healthcare professionals, employers and people with chronic or persistent pain. Step 1: stakeholder consultation event (n = 27) established content and format; Step 2: online survey with employees who have persistent pain (n = 274) showed employees fear disclosing their condition, and commonly report discrimination and lack of line manager support. Step 3: online employer survey (n = 107) showed employers rarely provide self-management materials or education around managing pain at work, occupational health recommendations for reasonable adjustments are not always actioned, and pain-related stigma is common. Step 4: Toolkit development integrated findings and recommendations from Steps 1–3, and iterative expert peer review was conducted (n = 40). The PAW toolkit provides (a) evidence-based guidelines and signposting around work-capacity advice and support; (b) self-management strategies around working with chronic or persistent pain, (c) promotion of healthy lifestyles, and quality of life at work; (d) advice on adjustments to working environments and workplace solutions to facilitate work participation.

scholarly journals Self-management strategies amongst Australian women with Endometriosis: a national online survey

2019 ◽  
Vol 6 ◽  
pp. S5-S6
Author(s):  
Mike Armour ◽  
Justin Sinclair ◽  
Jane Chalmers ◽  
Caroline Smith
Keyword(s):  
Online Survey ◽  
Management Strategies ◽  
Self Management

scholarly journals The treatment of sleep problems in autistic adults in the United Kingdom

Autism ◽  
2021 ◽  
pp. 136236132110072
Author(s):  
Elizabeth Halstead ◽  
Emma Sullivan ◽  
Zoe Zambelli ◽  
Jason G Ellis ◽  
Dagmara Dimitriou
Keyword(s):  
United Kingdom ◽  
Sleep Quality ◽  
Online Survey ◽  
Sleep Problems ◽  
Management Strategies ◽  
Self Management ◽  
Poor Sleep ◽  
The United Kingdom ◽  
Autistic Adults ◽  
Sleep Treatment

Sleep problems are one of the most common complaints in autistic adults. This study aimed to report the perspectives of autistic adults in the United Kingdom on treatment of their sleep problems. A total of 288 autistic adults living in the United Kingdom completed an online survey including assessments of their sleep quality using the Pittsburgh Sleep Quality Index, reporting their experiences and preferences of sleep treatment with UK healthcare professionals and, their experiences of self-management of their sleep. Self-report data revealed 58% of participants had not attended a consultation with a healthcare professional regarding their sleep problem despite 90% meeting the criteria for poor sleep quality (based on the Pittsburgh Sleep Quality Index). Of the participants who attended a consultation for their sleep, 72% were prescribed medication and 60% were not satisfied with the outcome. Self-management of sleep problems was not effective for 80% of participants; 41% reported a preference for non-medication options such as education, advice and talking therapies for sleep treatment. This report highlights the need for a fundamental shift in the consideration of sleep problems in autistic adults given the high levels of co-morbidity. The development of successful management strategies in adulthood that importantly considering autistic adults’ preferences could reduce sleep problems and overall improve quality of life for autistic adults. Long term this could also reduce the need for prescribed medication in this population. Lay abstract Sleep problems are one of the most common complaints by autistic adults. This study aimed to report the perspectives of autistic adults on treatment of their sleep problems; 288 autistic adults living in the United Kingdom completed an online survey which assessed their sleep quality. We also gathered data on experiences and preferences of sleep treatment with UK healthcare professionals and their experiences of self-management of their sleep; 58% of autistic adults never had a visit with a healthcare professional regarding their sleep problem, despite 90% meeting the criteria for poor sleep quality. Some of those who attended a consultation for their sleep were prescribed medication (72%), but 60% were not satisfied with the outcome. The participants also reported that sleep self-management was not effective (80%); 41% reported a preference for non-medication including education, advice and talking therapies for sleep treatment. This report highlights the need for a fundamental shift in treatment of sleep problems in autistic adults. The current treatments are not resolving sleep issues; hence, it is imperative to develop management strategies that considers autistic adults’ preferences, reduces sleep problems and thus improves quality of life for autistic adults.

scholarly journals Dietary practices of women with Endometriosis: a cross-sectional survey

2021 ◽  
Author(s):  
Mike Armour ◽  
Alexandra Middleton ◽  
Siew Lim ◽  
Justin Sinclair ◽  
David Varjabedian ◽  
...  
Keyword(s):  
Online Survey ◽  
Management Strategies ◽  
Gastrointestinal Symptoms ◽  
Community Setting ◽  
Self Management ◽  
Cross Sectional Survey ◽  
Dietary Practices ◽  
Cross Sectional ◽  
Fodmap Diet ◽  
Dietary Strategies

Abstract Background: Endometriosis causes deleterious effects on the lives of sufferers across multiple domains impacting quality of life. Commonly utilised pharmaceutical interventions offer sub-optimal efficacy in addition to potentially intolerable side effects for many women. There is some evidence for dietary therapies reducing endometriosis symptoms but little data on dietary preferences / strategies used, and their impact, in a community setting. Methods: A cross-sectional online survey was conducted between October and December 2017 to investigate the self-management strategies employed by women with endometriosis. Participants were aged 18-45 years, living in Australia and had a surgically confirmed diagnosis of endometriosis. Results: Four hundred and eighty-four responses were included for analysis, with 76% of women reporting the use of general self-management strategies within the last six months. Of these, 44% of respondents reported using dietary strategies for symptom management. Reducing or eliminating gluten, reducing or eliminating dairy and the low FODMAP diet were the most commonly reported dietary strategies utilised. Respondents reported a 6.4/10 effectiveness score for reduction in pelvic pain with dietary changes, with no difference in pain reduction between the various diets used. Further, women self-reported significant improvements in co-morbidities such as gastrointestinal disturbance (39%), nausea and vomiting (15%) and fatigue (15%).Conclusions: Dietary modifications are a very common self-management strategy employed by people with endometriosis, with the greatest benefit reported on gastrointestinal symptoms. Reducing or eliminating gluten, dairy or FODMAPs, or a combination of these, were the most common strategies. No single diet appeared to provide greater self-reported benefits than others.

A Case Study: Unique Challenges of an Adolescent Female With Autism Spectrum Disorder

2020 ◽  
Vol 5 (1) ◽  
pp. 314-325
Author(s):  
Kimberly F. Frazier ◽  
Jessica Collier ◽  
Rachel Glade
Keyword(s):  
Autism Spectrum Disorder ◽  
Cognitive Abilities ◽  
Social Cognitive ◽  
Social Performance ◽  
Management Strategies ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Self Management ◽  
Adolescent Female ◽  
Social Thinking

Background The aim of this study was to determine the clinical efficacy of combining self-management strategies and a social thinking approach to address the social performance and executive function of an adolescent female with autism spectrum disorder. Method This research examined the effects of a social knowledge training program, “Think Social,” as well as strategies to improve higher order cognitive abilities. Results and Conclusion Although quantitative improvement was not found, several qualitative gains in behavior were noted for the participants of this study, suggesting a benefit from using structured environmental cues of self-management strategies, as well as improved social understanding through social cognitive training.

scholarly journals Feasibility of an mHealth self-management intervention for children and adolescents with sickle cell disease and their families

2021 ◽  
Author(s):  
Shannon Phillips ◽  
Julie Kanter ◽  
Martina Mueller ◽  
Amy Gulledge ◽  
Kenneth Ruggiero ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Rating Scale ◽  
Management Strategies ◽  
Self Management ◽  
Cell Disease ◽  
Vessel Occlusion ◽  
Feasibility Assessment ◽  
Management Intervention ◽  
Scale Scores

Abstract Sickle cell disease (SCD) is an inherited hemoglobinopathy that leads to blood vessel occlusion and multiorgan complications, including pain, that may be experienced daily. Symptom management often begins at home, and tools are needed to support self-management strategies that can be implemented by children with SCD and families. The purpose of this study was to assess the feasibility of the mHealth self-management intervention (application) Voice Crisis Alert V2 for children with SCD and families. Feasibility assessment was guided by the Reach, Efficacy, Adoption, Implementation, and Maintenance framework. Data were collected with 60 dyads (children with SCD/caregivers) at four time points. Self-management data were collected via application use, and postintervention interviews were conducted. Analyses included descriptive statistics and constant comparison with directed content analysis. Recruitment was completed in 28 weeks, with 82% retention at end-of-intervention. Mobile Application Rating Scale scores and interview data indicated high satisfaction. From baseline to mid-intervention, 94% of dyads used the application (75% of total use); 45% used the application from mid-intervention to the end-of-intervention. Dyads made 2,384 actions in the application; the most commonly used features were recording health history and recording and tracking symptoms. Few reported issues with the application; most issues occurred early in the study and were corrected. After the intervention period was completed, 37% continued to use the application. Feasibility was confirmed by meeting recruitment and retention goals, high adoption of the application, and high reported satisfaction with the application. Challenges with sustained use were encountered, and areas for improvement were identified.

scholarly journals Augmenting the Clinical Data Sources for Enigmatic Diseases: A Cross-Sectional Study of Self-Tracking Data and Clinical Documentation in Endometriosis

2020 ◽  
Vol 11 (05) ◽  
pp. 769-784
Author(s):  
Ipek Ensari ◽  
Adrienne Pichon ◽  
Sharon Lipsky-Gorman ◽  
Suzanne Bakken ◽  
Noémie Elhadad
Keyword(s):  
Additional Data ◽  
Intraclass Correlation ◽  
Management Strategies ◽  
The Self ◽  
Self Management ◽  
Cross Sectional ◽  
Two Samples ◽  
Data Source ◽  
Daily Function ◽  
Over Time

Abstract Background Self-tracking through mobile health technology can augment the electronic health record (EHR) as an additional data source by providing direct patient input. This can be particularly useful in the context of enigmatic diseases and further promote patient engagement. Objectives This study aimed to investigate the additional information that can be gained through direct patient input on poorly understood diseases, beyond what is already documented in the EHR. Methods This was an observational study including two samples with a clinically confirmed endometriosis diagnosis. We analyzed data from 6,925 women with endometriosis using a research app for tracking endometriosis to assess prevalence of self-reported pain problems, between- and within-person variability in pain over time, endometriosis-affected tasks of daily function, and self-management strategies. We analyzed data from 4,389 patients identified through a large metropolitan hospital EHR to compare pain problems with the self-tracking app and to identify unique data elements that can be contributed via patient self-tracking. Results Pelvic pain was the most prevalent problem in the self-tracking sample (57.3%), followed by gastrointestinal-related (55.9%) and lower back (49.2%) pain. Unique problems that were captured by self-tracking included pain in ovaries (43.7%) and uterus (37.2%). Pain experience was highly variable both across and within participants over time. Within-person variation accounted for 58% of the total variance in pain scores, and was large in magnitude, based on the ratio of within- to between-person variability (0.92) and the intraclass correlation (0.42). Work was the most affected daily function task (49%), and there was significant within- and between-person variability in self-management effectiveness. Prevalence rates in the EHR were significantly lower, with abdominal pain being the most prevalent (36.5%). Conclusion For enigmatic diseases, patient self-tracking as an additional data source complementary to EHR can enable learning from the patient to more accurately and comprehensively evaluate patient health history and status.

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