scholarly journals Living With the Burden of Pseudobulbar Affect: A Qualitative Analysis of the Effects of Education on Patient Experience

2020 ◽  
Vol 7 (6) ◽  
pp. 1324-1330 ◽  
Author(s):  
Wendy Turell ◽  
Anne Roc ◽  
Erik Pioro ◽  
Alexandra Howson
Keyword(s):  
Neurological Diseases ◽  
Qualitative Interviews ◽  
Virtual Education ◽  
Self Management ◽  
Effective Mechanism ◽  
Pseudobulbar Affect ◽  
Neurological Conditions ◽  
The Impact ◽  
Education Symposium ◽  
Insight Into

Pseudobulbar affect (PBA) is associated with several neurological diseases and is underrecognized in clinical practice; however, PBA symptoms are often attributed to psychiatric or mood disorders rather than to neurological etiology. Until recently, there were no US Food and Drug Administration therapies approved for treating this condition, and there are currently few resources to support patients in the recognition and self-management of PBA symptoms. We evaluated the impact of a virtual education symposium on patient knowledge and self-efficacy via qualitative interviews. This evaluation of education impact provides unique insight into the experience of managing PBA symptoms; suggests that there is extensive need for educational resources to support patients with PBA and enable them to engage effectively with their providers; and affirms that online learning is an effective mechanism for delivering education to patients that enables them to more effectively self-manage symptoms in the context of chronic neurological conditions such as PBA.

scholarly journals Neurological Diseases, Disorders and Injuries in Canada: Highlights of a National Study

2016 ◽  
Vol 43 (1) ◽  
pp. 5-14 ◽  
Author(s):  
Garth M. Bray ◽  
Deanna L. Huggett
Keyword(s):  
Health Services ◽  
Neurological Diseases ◽  
Health Study ◽  
National Study ◽  
Economic Costs ◽  
Neurological Conditions ◽  
The Government ◽  
Government Of Canada ◽  
Synthesis Report ◽  
The Impact

AbstractThe National Population Health Study of Neurological Conditions, a partnership between Neurological Health Charities Canada and the Government of Canada, was the largest study of neurological diseases, disorders, and injuries ever conducted in Canada. Undertaken between 2009 and 2013, the expansive program of research addressed the epidemiology, impacts, health services, and risk factors of 18 neurological conditions and estimated the health outcomes and costs of these conditions in Canada through 2031. This review summarizes highlights from the component projects of the study as presented in the synthesis report, Mapping Connections: An Understanding of Neurological Conditions in Canada. The key findings included new prevalence and incidence estimates, documentation of the diverse and often debilitating effects of neurological conditions, and identification of the utilization, economic costs, and current limitations of related health services. The study findings will support health charities, governments, and other stakeholders to reduce the impact of neurological conditions in Canada.

scholarly journals Effects of Education on Symptom Recognition and Management of Pseudobulbar Affect: A Mixed-Methods Evaluation of Clinician Knowledge and Behavior Changes

2019 ◽  
Author(s):  
Wendy Turell ◽  
Anne Roc ◽  
Erik Pioro ◽  
Alexandra Howson
Keyword(s):  
Clinical Practice ◽  
Mixed Methods ◽  
Qualitative Interviews ◽  
The United States ◽  
Matched Pair ◽  
Pseudobulbar Affect ◽  
Knowledge And Skills ◽  
Symptom Recognition ◽  
The Impact ◽  
Case Based

Abstract Background Pseudobulbar affect (PBA) is under-recognized and often undertreated in clinical practice. There are few resources to support clinicians in the recognition and treatment of PBA symptoms, despite the approval by the United States Food and Drug Administration of a PBA-specific treatment. We evaluated the impact of a virtual education symposium on clinician knowledge and competence designed to improve knowledge and skills associated with identifying and managing PBA in patients with neurologic injury. Methods We designed a mixed methods outcomes methodology that included survey-based methods and qualitative interviews to measure trends in knowledge and competence. We measured changes in knowledge and competence via pre- and post-test online surveys that included case-based competence questions and knowledge-focused questions. McNemar test compared matched pair responses. Effect size was computed using Cohen’s d for all significant findings. Significance testing was conducted for matched pairs of learners who completed both pre/post and pre/survey, respectively. We explored the impact of the educational intervention on clinician knowledge, competency, and perspectives on PBA via qualitative interviews with a subsample of education participants. We used a process of constant comparison to structure analysis of participant responses to questions both across and within interviews. Results Participants’ PBA symptom recognition knowledge and skills increased following program participation and were maintained at follow-up. Responses to post-activity case-based questions showed that exposure to education enabled participants to better recognize and describe symptoms redolent of PBA. Following education, most participants said they would initiate therapy with on-label versus off-label medications. Qualitative descriptions of what interviewees say they would do in clinical practice were reflected in actual responses to knowledge and competence questions. Conclusions This mixed-method study demonstrates that online education is an effective and accessible tool for building knowledge and supporting clinical competence concerning PBA symptom recognition and management.

scholarly journals The burden of sialorrhoea in chronic neurological conditions: current treatment options and the role of incobotulinumtoxinA (Xeomin®)

2019 ◽  
Vol 12 ◽  
pp. 175628641988860 ◽  
Author(s):  
Francesca Morgante ◽  
Ganesh Bavikatte ◽  
Fahim Anwar ◽  
Biju Mohamed
Keyword(s):  
Botulinum Toxin ◽  
Care Pathway ◽  
Neurological Diseases ◽  
Clinical Care ◽  
Botulinum Toxin Type A ◽  
Treatment Options ◽  
Symptomatic Treatment ◽  
Anticholinergic Drugs ◽  
Neurological Conditions ◽  
The Impact

Sialorrhoea is a frequent symptom of neurological diseases (e.g. Parkinson’s disease, motor neuron disease, cerebral palsy, and stroke) and is defined as excessive saliva accumulation leading to unintentional loss of saliva from the mouth. Sialorrhoea increases the overall burden on the patient and their caregivers, the impact of which can be both physical and psychosocial. Treatments for sialorrhoea range from lifestyle and behavioural guidance, to medications, surgery or radiation. Nonpharmacological interventions include advice on posture, swallowing control, cough management, dietary changes, eating and drinking techniques, and behavioural modification; however, these conservative measures may be ineffective for people with progressive neurological conditions. The pharmacological treatment of sialorrhoea is challenging because medications licensed for this purpose are limited, but treatments can include anticholinergic drugs and botulinum toxins. Surgical treatment of sialorrhoea is typically reserved as a last resort for patients. IncobotulinumtoxinA (Xeomin®) is the first botulinum toxin type A to receive US and UK marketing authorization for the symptomatic treatment of chronic sialorrhoea due to neurological disorders in adults. In this review, we discuss and compare the frequency and method of administration, location of treatment delivery, approximate annual costs and main side effects of botulinum toxin and different anticholinergic drugs. Management of patients with chronic neurological conditions requires input from multiple specialist teams and thus a multidisciplinary team (MDT) approach is considered fundamental to ensure that care is consistent and tailored to patients’ needs. To ensure that adult patients with neurological conditions receive the best care and sialorrhoea is well managed, we suggest a potential clinical care pathway for sialorrhoea with a MDT approach, which healthcare professionals could aspire to.

scholarly journals The Osteoarthritis Thumb Therapy (OTTER) II Trial: a study protocol for a three-arm multi-centre randomised placebo controlled trial of the clinical effectiveness and efficacy and cost-effectiveness of splints for symptomatic thumb base osteoarthritis

BMJ Open ◽  
2019 ◽  
Vol 9 (10) ◽  
pp. e028342 ◽  
Author(s):  
Jo Adams ◽  
Paula Barratt ◽  
Nigel K Arden ◽  
Sofia Barbosa Bouças ◽  
Sarah Bradley ◽  
...  
Keyword(s):  
Cost Effectiveness ◽  
Functional Disability ◽  
Controlled Trial ◽  
Qualitative Interviews ◽  
Outcome Expectations ◽  
Management Programme ◽  
Self Management ◽  
Study Endpoint ◽  
South Central ◽  
The Impact

IntroductionThe economic cost of osteoarthritis (OA) is high. At least 4.4 million people have hand OA in the UK. Symptomatic thumb base OA affects 20% of people over 55 years, causing more pain, work and functional disability than OA elsewhere in the hand. Most evidence-based guidelines recommend splinting for hand OA. Splints that support or immobilise the thumb base are routinely used despite there being limited evidence on their effectiveness. The potential effects of placebo interventions in OA are acknowledged, but few studies investigate the clinical efficacy of rehabilitation interventions nor the impact of any placebo effects associated with splints.Methods and analysisParticipants aged 30 years and over with symptomatic thumb base OA will be recruited into the trial from secondary care occupational therapy and physiotherapy centres. Following informed consent, participants will complete a baseline questionnaire and then be randomised into one of three treatment arms: a self-management programme, a self-management programme plus a verum thumb splint or a self-management programme plus a placebo thumb splint. The primary outcome is the Australian Canadian Osteoarthritis Hand Index (AUSCAN) hand pain scale. The study endpoint is 8 weeks after baseline. Baseline assessments will be carried out prior to randomisation and outcomes collected at 4, 8 and 12 weeks. Cost-effectiveness analysis will be conducted and individual qualitative interviews conducted with up to 40 participants after 8 weeks to explore perceptions and outcome expectations of verum and placebo splints and exercise.Ethics and disseminationSouth Central—Oxford C Research Ethics Committee approved this study (16/SC/0188). The findings will be disseminated to health professional conferences, journals and lay publications for patient organisations. The research will contribute to improving the management of thumb base OA and help clinicians and patients make informed decisions about the value of different interventions.Trial registration numberISRCTN54744256.

scholarly journals 52 KneuroKnits: Evaluating social participation and anxiety response associated with participation in a knitting group for youth with neurological conditions (pilot study)

2020 ◽  
Vol 25 (Supplement_2) ◽  
pp. e21-e22
Author(s):  
Alisha Kapur ◽  
Melanie Penner ◽  
Jenny Nguyen ◽  
Justine Wiegelmann ◽  
Laura Hartman ◽  
...  
Keyword(s):  
Qualitative Analysis ◽  
Neurodevelopmental Disorders ◽  
Social Engagement ◽  
Social Skill ◽  
Brain Injuries ◽  
Qualitative Interviews ◽  
Final Session ◽  
Neurological Conditions ◽  
Anxiety Levels ◽  
The Impact

Abstract Background Knitting as a creative practice has a reputation for being therapeutic. There are many programs that use crafts as a method of creating social community and reducing anxiety for youth; however, there is no existing research that demonstrates these benefits. We designed a novel study to explore the benefits of a social skills knitting group on engagement and anxiety for youth with neurodevelopmental disorders. Objectives 1. To evaluate the social engagement experience of youth with neurological conditions participating in the KneuroKnits program. 2. Evaluate the impact of KneuroKnits intervention on anxiety levels of participants. Design/Methods We designed a 4-week knitting group for youth with neurodevelopmental disorders and acquired brain injuries. Each session included a lesson involving a knitting skill and a social skill. To evaluate social engagement, we used the Self-reported Experience of Activity Settings (SEAS) questionnaire at the first and final sessions. The five subcategories of the SEAS (Personal Growth, Psychological Engagement, Social Belonging, Meaningful Interactions and Choice & Control) were analyzed following the first and the last session. Qualitative interviews were conducted with participants, parents, and facilitators in the month following the final session and were analyzed using an interpretive phenomenological approach to outline commonly occurring themes in social engagement. To evaluate anxiety levels, participants completed the State-Trait Anxiety Inventory (STAI) at the beginning and end of the first and final sessions, respectively, and the Symptom Checklist-90-R (SCL-90) anxiety subscale; qualitative analysis included themes involving levels of anxiety from the interviews. Results There were 14 total participants with a mean age of 17.4 ± 2.2 years. Participants had primary diagnoses of ASD (n=9), acquired brain injury/concussion (n=4), and developmental coordination disorder (n=1). Social engagement results for the SEAS questionnaire showed a general increase in mean scores of all subcategories with a significant increase in the category of “Meaningful Interactions (p=0.02). This quantitatively demonstrated that the group had an impact on creating meaningful social connection. Qualitative analysis of the interviews revealed three commonly occurring themes: The balance of organic and facilitated social interaction, a sense of community from shared experience and direct benefits of knitting (pride, productivity, relaxation, a choice to be social). For the evaluation of anxiety levels, the STAI demonstrated a significant decrease in anxiety following both Session 1 (p=0.02) and Session 4 (p=0.006). The SCL-90-R Anxiety subsection scores significantly decreased between the first and final session (p=0.01). Participants voiced that the sessions made them feel calmer. Conclusion This knitting group merged a creative skill and social skill, and was novel in its approach to studying social engagement and anxiety within this population. Our study found that participants, their families and facilitators found KneuroKnits to be a valuable and rewarding program. Further study is needed in a larger sample to confirm our findings.

scholarly journals Covid-19 and school closure: Examining the impact on private mid-range and low-fee private basic schools in Ghana

Prospects ◽  
2021 ◽  
Author(s):  
Lordina Juvenile Ehwi ◽  
Richmond Juvenile Ehwi
Keyword(s):  
Private Schools ◽  
Teaching And Learning ◽  
Negative Impact ◽  
Qualitative Interviews ◽  
School Closure ◽  
Profit Margins ◽  
The Government ◽  
The Cost ◽  
The Impact ◽  
Insight Into

AbstractThe Covid-19 lockdown implemented globally to prevent the spread of the virus has led to the closure of schools. However, insight into the impact of the lockdown on private schools and the responses it has elicited is limited, especially across the African continent. This article examines the impact of the lockdown on private basic schools in Ghana and how they responded to the closure. Following “organizational ambidexterity” and qualitative interviews with nine proprietors of private schools in Ghana, the study found that the schools’ closure had a negative impact on private basic schools in five crucial ways: disruption to teaching and learning, difficulty in retrieving unpaid teaching fees, inability to pay staff salaries and statutory payments, underutilization of existing assets, and the cost of storing unused stock. The article offers suggestions to the government to support private schools that are broadening educational access at thin profit margins.

scholarly journals “Are you safe to talk?”: Perspectives of Service Providers on Experiences of Domestic Violence During the COVID-19 Pandemic

2022 ◽  
Author(s):  
Jenny K. Leigh ◽  
Lita Danielle Peña ◽  
Ashri Anurudran ◽  
Anant Pai
Keyword(s):  
Public Health ◽  
Domestic Violence ◽  
Lived Experiences ◽  
Service Providers ◽  
Qualitative Interviews ◽  
Key Factors ◽  
Additional Tool ◽  
Policy Interventions ◽  
The Impact ◽  
Insight Into

AbstractThis study aimed to better understand the factors driving reported trends in domestic violence during the COVID-19 pandemic, particularly the effect of the pandemic on survivors’ experiences of violence and ability to seek support. We conducted semi-structured qualitative interviews with 32 DV service providers operating in organizations across 24 U.S. cities. The majority of providers described a decrease in contact volume when shelter-in-place orders were first established, which they attributed to safety concerns, competing survival priorities, and miscommunication about what resources were available. For most organizations, this decrease was followed by an increase in contacts after the lifting of shelter-in-place orders, often surpassing typical contact counts from the pre-pandemic period. Providers identified survivors’ ability to return to some aspects of their pre-pandemic lives, increased stress levels, and increased lethality of cases as key factors driving this increase. In addition, providers described several unique challenges faced by DV survivors during the pandemic, such as the use of the virus as an additional tool for control by abusers and an exacerbated lack of social support. These findings provide insight into the lived experiences driving observed trends in DV rates during COVID-19. Understanding the impact of the pandemic on survivors can help to shape public health and policy interventions to better support this vulnerable population during future crises.

Impact of COVID-19 on perceived wellbeing, self-management and views of novel modalities of care among medically vulnerable patients in Singapore

2021 ◽  
pp. 174239532110674
Author(s):  
Sungwon Yoon ◽  
Pei Shan Hoe ◽  
Angelique Chan ◽  
Rahul Malhotra ◽  
Abhijit Visaria ◽  
...  
Keyword(s):  
Emotional Distress ◽  
Qualitative Interviews ◽  
Self Care ◽  
Self Management ◽  
Physical Interaction ◽  
Vulnerable Patients ◽  
National Cohort ◽  
Multivariable Regression ◽  
Male Patients ◽  
The Impact

Objectives This study aims to examine the impact of COVID-19 measures on wellbeing and self-management in medically vulnerable non-COVID patients and their views of novel modalities of care in Singapore. Methods Patients with cardiovascular disease (CVD), respiratory disease, chronic kidney disease, diabetes and cancer were recruited from the SingHealth cluster and national cohort of older adults. Data on demographics, chronic conditions and perceived wellbeing were collected using questionnaire. We performed multivariable regression to examine factors associated with perceived wellbeing. Qualitative interviews were conducted to elicit patient's experience and thematically analyzed. Results A total of 91 patients participated. Male patients compared with female patients perceived a lower impact of the pandemic on subjective wellbeing. Patients with CVD compared to those having conditions other than CVD perceived a lower impact. Impacts of the pandemic were primarily described in relation to emotional distress and interference in maintaining self-care. Hampering of physical activity featured prominently, but most did not seek alternative ways to maintain activity. Despite general willingness to try novel care modalities, lack of physical interaction and communication difficulties were perceived as main barriers. Discussion Findings underline the need to alleviate emotional distress and develop adaptive strategies to empower patients to maintain wellbeing and self-care.

Contact precautions for colonisation with multidrug-resistant organisms and haemodialysis patient quality of life and mood: a pilot case-control study

2019 ◽  
pp. 19-25 ◽  
Author(s):  
Rathika Krishnasamy
Keyword(s):  
Quality Of Life ◽  
Qualitative Interviews ◽  
Social Function ◽  
Multidrug Resistant ◽  
Contact Precautions ◽  
Dialysis Vintage ◽  
Multidrug Resistant Organisms ◽  
And Gender ◽  
The Impact

Background: The rate of multidrug-resistant organisms (MDRO) colonisation in dialysis populations has increased over time. This study aimed to assess the effect of contact precautions and isolation on quality of life and mood for haemodialysis (HD) patients colonised with MDRO. Methods: Patients undergoing facility HD completed the Kidney Disease Quality of Life (KDQOL–SFTM), Beck Depression Inventory (BDI) and Personal Wellbeing-Index Adult (PWI-A). Patients colonised with MDRO were case-matched by age and gender with patients not colonised. Results: A total of 16 MDRO-colonised patients were matched with 16 controls. Groups were well matched for demographics and co-morbidities, other than a trend for older dialysis vintage in the MDRO group [7.2 years (interquartile range 4.6–10.0) compared to 3.2 (1.4–7.6) years, p=0.05]. Comparing MDRO-positive with negative patients, physical (30.5±10.7 vs. 34.6±7.3; p=0.2) and mental (46.5±11.2 vs. 48.5±12.5; p = 0.6) composite scores were not different between groups. The MDRO group reported poorer sleep quality (p=0.01) and sleep patterns (p=0.05), and lower social function (p=0.02). BDI scores were similar (MDRO-positive 10(3.5–21.0) vs. MDRO-negative 12(6.5–16.0), p=0.6). PWI-A scores were also similar in both groups; however, MDRO patients reported lower scores for “feeling safe”, p=0.03. Conclusion: While overall scores of quality of life and depression were similar between groups, the MDRO group reported poorer outcomes in sleep and social function. A larger cohort and qualitative interviews may give more detail of the impact of contact precautions and isolation on HD patients. The necessity for contact precautions for different MDRO needs consideration.

Neurological consultations and diagnoses in a large, dedicated COVID-19 university hospital

2020 ◽  
Vol 78 (8) ◽  
pp. 494-500 ◽  
Author(s):  
Adalberto STUDART-NETO ◽  
Bruno Fukelmann GUEDES ◽  
Raphael de Luca e TUMA ◽  
Antonio Edvan CAMELO FILHO ◽  
Gabriel Taricani KUBOTA ◽  
...  
Keyword(s):  
Neurological Diseases ◽  
Neuromuscular Disorders ◽  
Neurological Symptoms ◽  
University Hospital ◽  
Special Treatment ◽  
Nasal Swabs ◽  
Neurological Exam ◽  
Neurological Conditions ◽  
De Medicina

ABSTRACT Background: More than one-third of COVID-19 patients present neurological symptoms ranging from anosmia to stroke and encephalopathy. Furthermore, pre-existing neurological conditions may require special treatment and may be associated with worse outcomes. Notwithstanding, the role of neurologists in COVID-19 is probably underrecognized. Objective: The aim of this study was to report the reasons for requesting neurological consultations by internists and intensivists in a COVID-19-dedicated hospital. Methods: This retrospective study was carried out at Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo, Brazil, a 900-bed COVID-19 dedicated center (including 300 intensive care unit beds). COVID-19 diagnosis was confirmed by SARS-CoV-2-RT-PCR in nasal swabs. All inpatient neurology consultations between March 23rd and May 23rd, 2020 were analyzed. Neurologists performed the neurological exam, assessed all available data to diagnose the neurological condition, and requested additional tests deemed necessary. Difficult diagnoses were established in consensus meetings. After diagnosis, neurologists were involved in the treatment. Results: Neurological consultations were requested for 89 out of 1,208 (7.4%) inpatient COVID admissions during that period. Main neurological diagnoses included: encephalopathy (44.4%), stroke (16.7%), previous neurological diseases (9.0%), seizures (9.0%), neuromuscular disorders (5.6%), other acute brain lesions (3.4%), and other mild nonspecific symptoms (11.2%). Conclusions: Most neurological consultations in a COVID-19-dedicated hospital were requested for severe conditions that could have an impact on the outcome. First-line doctors should be able to recognize neurological symptoms; neurologists are important members of the medical team in COVID-19 hospital care.

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