Hospital management of intractable headaches. The Instituto de Neurologia de Curitiba approach

Intractable headaches, also called refractory headaches, are usually unresponsive to standard therapies and comprise clinical conditions that represent a clinical management problem regarding therapy. Thereby, many approaches to manage "intractable headaches" have been proposed; meanwhile many aspects remain unclear and open to debate. Accordingly, these patients often require special care and customized management, such as inpatient treatment. Hospitalization aims to enhance management of the patients as a whole and thus improve their quality of life. This paper summarizes the Instituto de Neurologia de Curitiba (INC) approach, which comprises withdrawal of the overused medication, management of abstinence symptoms, management of rebound headache, introduction of effective prophylactic therapy, general counseling and education of the patient, and other aspects of management. The inpatient approach used at the INC is presented and a small sample of patients treated according to this approach is described and discussed.

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A balanced approach to race in the treatment of personality disorder

Advances in Psychiatric Treatment ◽

10.1192/apt.bp.108.006502 ◽

2011 ◽

Vol 17 (2) ◽

pp. 139-141

Author(s):

Piyal Sen ◽

Dave Ramaswamy

Keyword(s):

Quality Of Life ◽

Personality Disorder ◽

Race And Ethnicity ◽

Clinical Management ◽

Early Stage ◽

Terminally Ill ◽

Management Problem ◽

Clinical Team ◽

Balanced Approach

SummaryThis case illustrates a clinical management problem in which a terminally ill psychiatric patient racially abuses the Black staff caring for him. The clinical team has to tread a fine line between supporting staff victimised by the patient and ensuring his quality of life and care. It is important that patients' (and staff's) sensitivities relating to race and ethnicity are openly discussed at an early stage, so that appropriate clinical management can be negotiated.

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Assessment and management of disease burden and quality of life in patients with hereditary angioedema: a consensus report

Allergy Asthma & Clinical Immunology ◽

10.1186/s13223-021-00537-2 ◽

2021 ◽

Vol 17 (1) ◽

Author(s):

Konrad Bork ◽

John T. Anderson ◽

Teresa Caballero ◽

Timothy Craig ◽

Douglas T. Johnston ◽

...

Keyword(s):

Quality Of Life ◽

Hereditary Angioedema ◽

Clinical Management ◽

Disease Burden ◽

The United States ◽

Consensus Meeting ◽

Consensus Statements ◽

Consensus Report

Abstract Background Hereditary angioedema (HAE) is a rare disease characterized by unpredictable, potentially life-threatening attacks, resulting in significant physical and emotional burdens for patients and families. To optimize care for patients with HAE, an individualized management plan should be considered in partnership with the physician, requiring comprehensive assessment of the patient’s frequency and severity of attacks, disease burden, and therapeutic control. Although several guidelines and consensus papers have been published concerning the diagnosis and treatment of HAE, there has been limited specific clinical guidance on the assessment of disease burden and quality of life (QoL) in this patient population. Practical guidance is critical in supporting effective long-term clinical management of HAE and improving patient outcomes. The objective of this review is to provide evidence-based guidelines for an individualized assessment of disease burden and QoL in patients with HAE. Methods A consensus meeting was held on February 29, 2020, consisting of 9 HAE experts from the United States and Europe with extensive clinical experience in the treatment of HAE. Consensus statements were developed based on a preliminary literature review and discussions from the consensus meeting. Results Final statements reflect the consensus of the expert panel and include the assessment of attack severity, evaluation of disease burden, and long-term clinical management of HAE caused by C1-esterase inhibitor deficiency. Patient-reported outcome measures for assessing HAE attack severity and frequency are available and valuable tools; however, attack frequency and severity are insufficient markers of disease severity unless they are evaluated in the broader context of the effect on an individual patient’s QoL. QoL assessments should be individualized for each patient and minimally, they should address the interference of HAE with work, school, social, family, and physical activity, along with access to and burden of HAE treatment. Advances in HAE therapies offer the opportunity for comprehensive, individualized treatment plans, allowing patients to achieve minimal attack burden with reduced disease and treatment burden. Conclusion This consensus report builds on existing guidelines by expanding the assessment of disease burden and QoL measures for patients with HAE.

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The effects of intensive home treatment on self-efficacy in patients recovering from a psychiatric crisis

International Journal of Mental Health Systems ◽

10.1186/s13033-020-00426-y ◽

2021 ◽

Vol 15 (1) ◽

Author(s):

Ansam Barakat ◽

Matthijs Blankers ◽

Jurgen E Cornelis ◽

Nick M Lommerse ◽

Aartjan T F Beekman ◽

...

Keyword(s):

Quality Of Life ◽

Mental Disorders ◽

Self Efficacy ◽

Psychotic Disorders ◽

Rating Scale ◽

Small Sample ◽

Home Treatment ◽

Differential Effects ◽

Psychiatric Crisis

Abstract Background This study evaluated whether providing intensive home treatment (IHT) to patients experiencing a psychiatric crisis has more effect on self-efficacy when compared to care as usual (CAU). Self-efficacy is a psychological concept closely related to one of the aims of IHT. Additionally, differential effects on self-efficacy among patients with different mental disorders and associations between self-efficacy and symptomatic recovery or quality of life were examined. Methods Data stem from a Zelen double consent randomised controlled trial (RCT), which assesses the effects of IHT compared to CAU on patients who experienced a psychiatric crisis. Data were collected at baseline, 6 and 26 weeks follow-up. Self-efficacy was measured using the Mental Health Confidence Scale. The 5-dimensional EuroQol instrument and the Brief Psychiatric Rating Scale (BPRS) were used to measure quality of life and symptomatic recovery, respectively. We used linear mixed modelling to estimate the associations with self-efficacy. Results Data of 142 participants were used. Overall, no difference between IHT and CAU was found with respect to self-efficacy (B = − 0.08, SE = 0.15, p = 0.57), and self-efficacy did not change over the period of 26 weeks (B = − 0.01, SE = 0.12, t (103.95) = − 0.06, p = 0.95). However, differential effects on self-efficacy over time were found for patients with different mental disorders (F(8, 219.33) = 3.75, p < 0.001). Additionally, self-efficacy was strongly associated with symptomatic recovery (total BPRS B = − 0.10, SE = 0.02, p < 0.00) and quality of life (B = 0.14, SE = 0.01, p < 0.001). Conclusions Although self-efficacy was associated with symptomatic recovery and quality of life, IHT does not have a supplementary effect on self-efficacy when compared to CAU. This result raises the question whether, and how, crisis care could be adapted to enhance self-efficacy, keeping in mind the development of self-efficacy in depressive, bipolar, personality, and schizophrenia spectrum and other psychotic disorders. The findings should be considered with some caution. This study lacked sufficient power to test small changes in self-efficacy and some mental disorders had a small sample size. Trial registration This trial is registered at Trialregister.nl, number NL6020.

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Quality of life in primary sclerosing cholangitis: a systematic review

Health and Quality of Life Outcomes ◽

10.1186/s12955-021-01739-3 ◽

2021 ◽

Vol 19 (1) ◽

Author(s):

Elena Marcus ◽

Paddy Stone ◽

Anna-Maria Krooupa ◽

Douglas Thorburn ◽

Bella Vivat

Keyword(s):

Quality Of Life ◽

Systematic Review ◽

Clinical Research ◽

Disease Progression ◽

Primary Sclerosing Cholangitis ◽

Sclerosing Cholangitis ◽

Small Sample ◽

Limited Evidence ◽

Research Studies

Abstract Background Primary sclerosing cholangitis (PSC) is a rare bile duct and liver disease which can considerably impact quality of life (QoL). As part of a project developing a measure of QoL for people with PSC, we conducted a systematic review with four review questions. The first of these questions overlaps with a recently published systematic review, so this paper reports on the last three of our initial four questions: (A) How does QoL in PSC compare with other groups?, (B) Which attributes/factors are associated with impaired QoL in PSC?, (C) Which interventions are effective in improving QoL in people with PSC?. Methods We systematically searched five databases from inception to 1 November 2020 and assessed the methodological quality of included studies using standard checklists. Results We identified 28 studies: 17 for (A), ten for (B), and nine for (C). Limited evidence was found for all review questions, with few studies included in each comparison, and small sample sizes. The limited evidence available indicated poorer QoL for people with PSC compared with healthy controls, but findings were mixed for comparisons with the general population. QoL outcomes in PSC were comparable to other chronic conditions. Itch, pain, jaundice, severity of inflammatory bowel disease, liver cirrhosis, and large-duct PSC were all associated with impaired QoL. No associations were found between QoL and PSC severity measured with surrogate markers of disease progression or one of three prognostic scoring systems. No interventions were found to improve QoL outcomes. Conclusion The limited findings from included studies suggest that markers of disease progression used in clinical trials may not reflect the experiences of people with PSC. This highlights the importance for clinical research studies to assess QoL alongside clinical and laboratory-based outcomes. A valid and responsive PSC-specific measure of QoL, to adequately capture all issues of importance to people with PSC, would therefore be helpful for clinical research studies.

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Community intervention strategies to reduce the impact of financial strain and promote financial well-being: a comprehensive rapid review

Global Health Promotion ◽

10.1177/1757975920984182 ◽

2021 ◽

Vol 28 (1) ◽

pp. 42-50

Author(s):

Nicole M. Glenn ◽

Lisa Allen Scott ◽

Teree Hokanson ◽

Karla Gustafson ◽

Melissa A. Stoops ◽

...

Keyword(s):

Quality Of Life ◽

Community Intervention ◽

Well Being ◽

Small Sample ◽

Financial Strain ◽

Rapid Review ◽

Research Centre ◽

Future Research ◽

The Impact

Financial well-being describes when people feel able to meet their financial obligations, feel financially secure and are able to make choices that benefit their quality of life. Financial strain occurs when people are unable to pay their bills, feel stressed about money and experience negative impacts on their quality of life and health. In the face of the global economic repercussions of the COVID-19 pandemic, community-led approaches are required to address the setting-specific needs of residents and reduce the adverse impacts of widespread financial strain. To encourage evidence-informed best practices, a provincial health authority and community-engaged research centre collaborated to conduct a rapid review. We augmented the rapid review with an environmental scan and interviews. Our data focused on Western Canada and was collected prior to the pandemic (May–September 2019). We identified eight categories of community-led strategies to promote financial well-being: systems navigation and access; financial literacy and skills; emergency financial assistance; asset building; events and attractions; employment and educational support; transportation; and housing. We noted significant gaps in the evidence, including methodological limitations of the included studies (e.g. generalisability, small sample size), a lack of reporting on the mechanisms leading to the outcomes and evaluation of long-term impacts, sparse practice-based data on evaluation methods and outcomes, and limited intervention details in the published literature. Critically, few of the included interventions specifically targeted financial strain and/or well-being. We discuss the implications of these gaps in addition to possibilities and priorities for future research and practice. We also consider the results in relation to the COVID-19 pandemic and its economic consequences.

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The Relationship between Restless Legs Syndrome and Quality of Life in Patients with Myasthenia Gravis

European Neurology ◽

10.1159/000502002 ◽

2019 ◽

Vol 81 (3-4) ◽

pp. 205-208

Author(s):

Monica F. Ataide ◽

Carolina da Cunha-Correia ◽

Katia C.L. Petribú

Keyword(s):

Quality Of Life ◽

Myasthenia Gravis ◽

Restless Legs Syndrome ◽

Rating Scale ◽

Cross Sectional Study ◽

Cross Sectional ◽

Restless Legs ◽

Study Population ◽

Clinical Conditions

Background: Restless legs syndrome (RLS) is characterized for an uncomfortable sensation in legs and an irresistible desire to move them. This disorder has been more recently recognized in patients with myasthenia gravis (MG) and can interfere with the quality of life (QOL). Objectives: The aims of this study are to describe the prevalence of RLS and its severity and influence on the QOL in patients with MG. Method: This was a cross-sectional study conducted from May to June 2016 in Recife, Brazil. A sample of 42 patients was interviewed using a sociodemographic questionnaire, MG QOL questionnaire-15 and The RLS Rating Scale. Results: RLS was present in 47.6% of patients and of these 40.5% met moderate to severe RLS criteria. Patients were 45 years on average (SD ± 14.4) and women represented 57.1% of the study population. Among patients with RSL, the quality-of-life scores were worse (p = 0.010) on average. There was no association of RLS with the duration of MG, use of immunosuppressant or clinical conditions that could mimic the occurrence of RLS. Conclusion: RLS is a prevalent condition in patients with MG, and may be severe enough to negatively impact QOL.

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A preliminary psychometric evaluation of Music in Dementia Assessment Scales (MiDAS)

International Psychogeriatrics ◽

10.1017/s1041610214000180 ◽

2014 ◽

Vol 26 (6) ◽

pp. 1011-1019 ◽

Cited By ~ 13

Author(s):

Orii McDermott ◽

Vasiliki Orgeta ◽

Hanne Mette Ridder ◽

Martin Orrell

Keyword(s):

Quality Of Life ◽

Music Therapy ◽

Sample Size ◽

Psychometric Properties ◽

Care Home ◽

Psychometric Evaluation ◽

Small Sample ◽

Rater Reliability ◽

Assessment Scales

ABSTRACTBackground:Music in Dementia Assessment Scales (MiDAS), an observational outcome measure for music therapy with people with moderate to severe dementia, was developed from qualitative data of focus groups and interviews. Expert and peer consultations were conducted at each stage of the scale development to maximize its content validity. This study aimed to evaluate the psychometric properties of MiDAS.Methods:Care home residents with dementia attended weekly group music therapy for up to ten sessions. Music therapists and care home staff were requested to complete weekly MiDAS ratings. The Quality of Life Scale (QoL-AD) was completed at three time-points.Results:A total of 629 (staff = 306, therapist = 323) MiDAS forms were completed. The statistical analysis revealed that MiDAS has high therapist inter-rater reliability, low staff inter-rater reliability, adequate staff test-retest reliability, adequate concurrent validity, and good construct validity. High factor loadings between the five MiDAS Visual Analogue Scale (VAS) items, levels of Interest, Response, Initiation, Involvement, and Enjoyment, were found.Conclusions:This study indicates that MiDAS has good psychometric properties despite the small sample size. Future research with a larger sample size could provide a more in-depth psychometric evaluation, including further exploration of the underlying factors. MiDAS provides a measure of engagement with musical experience and offers insight into who is likely to benefit on other outcomes such as quality of life or reduction in psychiatric symptoms.

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Comparative Analysis of Knee Joint Fusion with Long Locking Nail and Ilizarov Apparatus in Patients with Deep Infection after Arthroplasty

Traumatology and Orthopedics of Russia ◽

10.21823/2311-2905-2020-26-3-109-118 ◽

2020 ◽

Vol 26 (3) ◽

pp. 109-118

Author(s):

L. N. Solomin ◽

E. A. Shchepkina ◽

K. L. Korchagin ◽

F. K. Sabirov

Keyword(s):

Quality Of Life ◽

Comparative Analysis ◽

Blood Loss ◽

Knee Joint ◽

Internal Fixation ◽

Inpatient Treatment ◽

Deep Infection ◽

Knee Arthrodesis ◽

Locking Nail

Relevance. Deep infection after knee arthroplasty requires radical surgical treatment of the infection site, removal of endoprosthesis components, and an antimicrobial spacer placement. If revision knee arthroplasty is impossible, the «gold standard» for this kind of patients is knee joint arthrodesis. The purpose of the study was the comparative analysis of knee joint fusion by external and internal fixation. Materials and Methods. The analysis of 60 cases of knee arthrodesis was carried out. The patients were divided into two groups with 30 patients in each. In the first group, knee arthrodesis was performed with long locking nail, in the second group — with external ring fixation. We compared the groups by intraoperative and drainage blood loss, the inpatient treatment duration, the terms of fusion and complications registered. The patients quality of life was evaluated using the SF-36 questionnaire before surgery, for the periods of 3, 6, and 12 months after the surgery. Results. The comparison of two methods of knee arthrodesis showed that blood loss in the internal fixation compared with external one, was 2.03 times more, the duration of inpatient treatment was 1.4 times less, and the total number of complications was 4.4 times less. However, the complications that affected the treatment outcome in long nail group were 1.5 times more. The differences in the average time of ankylosis formation were not statistically significant (p<0.05). The functional results of the treatment in 3 months after surgery in the group with internal fixation were much better. In 6 months after surgery the quality of life had no significant differences. In 12 months follow-up the indices in both groups were the same. Conclusion. The results of our study suggests us to think, knee joint arthrodesis by long fusion nail should be prefereble. If the nail insertion is technically impossible, and there is the high risk of deep infection recurrence, the external osteosynthesis should be used.

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An initial validation of a new quality of life measure for adults with intellectual disability: The Mini-MANS-LD

Journal of Intellectual Disabilities ◽

10.1177/1744629518787895 ◽

2018 ◽

Vol 24 (2) ◽

pp. 177-193

Author(s):

Roman Raczka ◽

Kate Theodore ◽

Janice Williams

Keyword(s):

Quality Of Life ◽

Intellectual Disability ◽

Small Sample Size ◽

Initial Study ◽

Small Sample ◽

Self Report ◽

Life Measure ◽

Acceptable Internal Consistency ◽

Report Measure

There is an appropriate increasing focus on the need to ensure the voices of people with intellectual disability are captured as part of assessing individuals’ quality of life; however, there remains a lack of a consensus on ways to achieve this. This article describes the development of a self-report measure of quality of life for people with intellectual disability, the ‘Mini-MANS-LD’, based on the concepts of Maslow’s hierarchy of needs. Following use with 33 individuals with intellectual disability, the Mini-MANS-LD was found to have acceptable psychometric properties, including moderate congruent validity and acceptable internal consistency. Administrators’ feedback suggested good acceptability and feasibility, and the measure was relatively quick to administer, easy to use and acceptable to service users. Despite a small sample size, this initial study suggests that the Mini-MANS-LD may present a conceptually relevant, feasible and acceptable self-report measure of quality of life for people with intellectual disability.

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Assistive Technology to Promote Adaptive Skills in Children and Adolescents With Rett Syndrome

10.4018/978-1-7998-7430-0.ch007 ◽

2022 ◽

pp. 131-146

Author(s):

Donatella Ciarmoli

Keyword(s):

Quality Of Life ◽

Rett Syndrome ◽

Assistive Technologies ◽

Genetic Syndromes ◽

Motor Impairments ◽

Use Of Technology ◽

Adaptive Responding ◽

Clinical Conditions ◽

The Impact

Rett syndrome is classified within the rare genetic syndromes, characterised by intellectual delays, extensive motor impairments, lack of speech and communication difficulties, sensorial deficits, and problems in adaptive responding. That clinical conditions may be deleterious on their social image, status, and quality of life. A practice for addressing this problem is technology-based interventions. The use of assistive technologies, in particular microswitches, with children with RTT has been shown to effectively change the impact on their quality of life, facilitating access to recreational activities and improving their performance. Through the use of technology-aided programs, a child with RTT and multiple disabilities will be ensured with an independent access to positive stimulation. In this chapter, a selective literature review was carried out considering Rett Syndrome, assistive technologies, quality of life, and rare genetic syndromes. Empirical data demonstrated the effectiveness and suitability of interventions with AT, allowing participants to increase their level of independence.

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