scholarly journals ERS clinical practice guidelines on treatment of sarcoidosis

2021 ◽  
pp. 2004079
Author(s):  
Robert P. Baughman ◽  
Dominique Valeyre ◽  
Peter Korsten ◽  
Alexander G. Mathioudakis ◽  
Wim A. Wuyts ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Task Force ◽  
Treatment Guideline ◽  
Evidence Based ◽  
Insufficient Evidence ◽  
European Respiratory Society ◽  
Symptomatic Disease ◽  
First Choice ◽  
Treatment Of Sarcoidosis

BackgroundThe major reasons to treat sarcoidosis are to lower the morbidity and mortality risk or to improve quality of life (QoL). The indication for treatment varies depending on which manifestation is the cause of symptoms: lungs, heart, brain, skin, or other manifestations. While glucocorticoids (GC) remain the first choice for initial treatment of symptomatic disease, prolonged use is associated with significant toxicity. GC-sparing alternatives are available. The presented treatment guideline aims to provide guidance to physicians treating the very heterogenous sarcoidosis manifestations.Materials and MethodsA European Respiratory Society Task Force (TF) committee composed of clinicians, methodologists, and patients with experience in sarcoidosis developed recommendations based on the GRADE (Grading of Recommendations, Assessment, Development and Evaluations) methodology. The committee developed eight PICO (Patients, Intervention, Comparison, Outcomes) questions and these were used to make specific evidence-based recommendations.ResultsThe TF committee delivered twelve recommendations for seven PICOs. These included treatment of pulmonary, cutaneous, cardiac, and neurologic disease as well as fatigue. One PICO question regarding small fiber neuropathy had insufficient evidence to support a recommendation. In addition to the recommendations, the committee provided information on how they use alternative treatments, when there was insufficient evidence to support a recommendation.ConclusionsThere are many treatments available to treat sarcoidosis. Given the diverse nature of the disease, treatment decisions require an assessment of organ involvement, risk for significant morbidity, and impact on QoL of the disease and treatment.MessageAn evidence based guideline for treatment of sarcoidosis is presented. The panel used the GRADE approach and specific recommendations are made. A major factor in treating patients is the risk of loss of organ function or impairment of quality of life.

Misophonia: An Evidence-Based Case Report

2020 ◽  
Vol 29 (4) ◽  
pp. 685-690
Author(s):  
C. S. Vanaja ◽  
Miriam Soni Abigail
Keyword(s):  
Quality Of Life ◽  
Case Report ◽  
Case History ◽  
Pure Tone ◽  
Physiological Responses ◽  
Evidence Based ◽  
Management Option ◽  
Pure Tone Audiogram

Purpose Misophonia is a sound tolerance disorder condition in certain sounds that trigger intense emotional or physiological responses. While some persons may experience misophonia, a few patients suffer from misophonia. However, there is a dearth of literature on audiological assessment and management of persons with misophonia. The purpose of this report is to discuss the assessment of misophonia and highlight the management option that helped a patient with misophonia. Method A case study of a 26-year-old woman with the complaint of decreased tolerance to specific sounds affecting quality of life is reported. Audiological assessment differentiated misophonia from hyperacusis. Management included retraining counseling as well as desensitization and habituation therapy based on the principles described by P. J. Jastreboff and Jastreboff (2014). A misophonia questionnaire was administered at regular intervals to monitor the effectiveness of therapy. Results A detailed case history and audiological evaluations including pure-tone audiogram and Johnson Hyperacusis Index revealed the presence of misophonia. The patient benefitted from intervention, and the scores of the misophonia questionnaire indicated a decrease in the severity of the problem. Conclusions It is important to differentially diagnose misophonia and hyperacusis in persons with sound tolerance disorders. Retraining counseling as well as desensitization and habituation therapy can help patients who suffer from misophonia.

Prophylaxis in people with haemophilia

2009 ◽  
Vol 101 (04) ◽  
pp. 674-681 ◽  
Author(s):  
Massimo Franchini ◽  
Annarita Tagliaferri ◽  
Antonio Coppola
Keyword(s):  
Quality Of Life ◽  
Cost Benefit ◽  
Primary Prophylaxis ◽  
Secondary Prophylaxis ◽  
Severe Haemophilia ◽  
Duration Of Treatment ◽  
First Choice ◽  
Long Term Treatment

SummaryA four-decade clinical experience and recent evidence from randomised controlled studies definitively recognised primary prophylaxis, i.e. the regular infusion of factor concentrates started after the first haemarthrosis and/or before the age of two years, as the first-choice treatment in children with severe haemophilia. The available data clearly show that preventing bleeding since an early age enables to avoid or reduce the clinical impact of muscle-skeletal impairment from haemophilic arthropathy and the related consequences in psycho-social development and quality of life of these patients. In this respect, the aim of secondary prophylaxis, defined as regular long-term treatment started after the age of two years or after two or more joint bleeds, is to avoid (or delay) the progression of arthropathy. The clinical benefits of secondary prophylaxis have been less extensively studied, especially in adolescents and adults; also in the latter better outcomes and quality of life for earlier treatment have been reported. This review summarises evidence from literature and current clinical strategies for prophylactic treatment in patients with severe haemophilia, also focusing on challenges and open issues (optimal regimen and implementation, duration of treatment, long-term adherence and outcomes, cost-benefit ratios) in this setting.

scholarly journals Measuring What Matters for Children: A Systematic Review of Frequently Used Pediatric Generic PRO Instruments

2021 ◽  
Author(s):  
Tasneem Arsiwala ◽  
Nuzhat Afroz ◽  
Kattayoun Kordy ◽  
Christel Naujoks ◽  
Francesco Patalano
Keyword(s):  
Quality Of Life ◽  
Child Health ◽  
Clinical Studies ◽  
Task Force ◽  
Emotional Health ◽  
Research Practices ◽  
European Collaboration ◽  
Patient Reported ◽  
Good Research

Abstract Objective To provide an assessment of the quality of the most frequently used self-reported, generic patient-reported outcome measures (PROMs) that measure health-related quality of life (HRQoL) in children against the good research practices recommended by ISPOR task force for the pediatric population. Method Literature search was conducted on OvidSP database to identify the generic pediatric PROMs used in published clinical studies. The quality of PROMs used in more than ten clinical studies were descriptively evaluated against the ISPOR task force’s good research practices. Results Six PROMs were evaluated, namely Pediatric Quality-of-Life inventory 4.0 (PedsQL), Child Health Questionnaire (CHQ), KIDSCREEN, KINDL, DISABKIDS and Child Health and Illness Profile (CHIP). All PROMs, except KIDSCREEN, had versions for different age ranges. Domains of physical, social, emotional health and school activities were common across all the instruments, while domains of family activities, parent relations, independence, and self-esteem were not present in all. Children’s input was sought during the development process of PROMs. Likert scales were used in all the instruments, supplemented with faces (smileys) in instruments for children under 8 years. KIDSCREEN and DISABKIDS were developed in a European collaboration project considering the cross-cultural impact during development. Conclusion The comparison of the instruments highlights differences in the versions for different pediatric age groups. None of the PROMs fulfill all the good research practices recommended by the ISPOR task force. Further research is needed to define which age-appropriate domains are important for older children and adolescents.

scholarly journals MP-AzeFlu in Moderate-to-Severe Allergic Rhinitis: A Literature Review

2021 ◽  
pp. 1-10
Author(s):  
Ludger Klimek ◽  
William E. Berger ◽  
Jean Bousquet ◽  
Paul K. Keith ◽  
Peter Smith ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Allergic Rhinitis ◽  
Fluticasone Propionate ◽  
Treatment Options ◽  
Symptomatic Disease ◽  
Intranasal Corticosteroids ◽  
Need For Treatment ◽  
Ocular Symptoms ◽  
Symptom Complex

Allergic rhinitis (AR) is prevalent, and many patients present with moderate-to-severe symptomatic disease. The majority of patients are not satisfied with their AR treatment, despite the use of concurrent medications. These gaps underscore the need for treatment with more effective options for moderate-to-severe AR. The authors’ objective was to review systematically the efficacy and safety of MP-AzeFlu for the treatment of AR. The primary outcomes studied were nasal, ocular, and total symptoms. Other outcomes included time to onset and of AR control, quality of life, and safety. Searches of PubMed and Cochrane databases were conducted on May 14, 2020, with no date restrictions, to identify publications reporting data on MP-AzeFlu. Clinical studies of any phase were included. Studies were excluded if they were not in English, were review articles, did not discuss the safety and efficacy of MP-AzeFlu for AR symptoms. Treatment of AR with MP-AzeFlu results in effective, sustained relief of nasal and ocular symptoms, and faster onset and time to control compared with intranasal azelastine or fluticasone propionate. Long-term use of MP-AzeFlu was safe, with benefits in children, adults, and adults aged ≥65 years. Other treatment options, including fluticasone propionate and azelastine alone or the combination of intranasal corticosteroids and oral antihistamine, do not provide the same level of efficacy as MP-AzeFlu in terms of rapid and sustained relief of the entire AR symptom complex. Furthermore, MP-AzeFlu significantly improves patient quality of life. MP-AzeFlu is a currently available combination that may satisfy all these patient needs and expectations.

scholarly journals Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management

Autism ◽  
2020 ◽  
pp. 136236132096236
Author(s):  
Joanne Tarver ◽  
Effie Pearson ◽  
Georgina Edwards ◽  
Aryana Shirazi ◽  
Liana Potter ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Language Use ◽  
Management Strategies ◽  
Assessment Tools ◽  
Evidence Based ◽  
Structured Interviews ◽  
Verbal Language ◽  
Parental Recognition

Anxiety is a common co-occurring condition in autism and impacts quality of life of autistic individuals and their families; autistic individuals who speak few or no words represent an under-researched group. This qualitative study aimed to understand more about parental recognition and management of anxiety in autistic individuals who speak few or no words. Semi-structured interviews were conducted with parents/carers of 17 autistic individuals (mage = 14.29) recruited from an existing participant database and social media adverts. Using thematic analysis, 15 themes were placed under three a-priori grand themes: parental recognition of anxiety; parental management of anxiety; and anxiety impact on the autistic individual and their family. Due to reduced verbal language use and overlap with other behaviours, parents described difficulties recognising anxiety in their child. However, they also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. The findings of this study can help to inform the development of targeted intervention and assessment measures for anxiety in autistic individuals who speak few or no words. Lay abstract Anxiety is a common condition in autistic individuals, including those who also have an intellectual disability. Despite this, autistic individuals who have severe to profound intellectual disability, or use few or no words, are often excluded from autism research. There are also very few assessment tools and interventions with known effectiveness for autistic individuals with intellectual disability. In this study, we aimed to learn more about parent/carers experiences of recognising and managing anxiety in autistic individuals who use few or no words. We conducted semi-structured interviews with parents and carers to address three research questions: (1) what techniques and management strategies do parents describe for anxiety-related behaviour in their child; (2) how do communication difficulties impact parental understanding and management of anxiety provoking situations and behaviours; (3) what is the impact of anxiety-related behaviours on the quality of life of autistic individuals and their families? During the interviews, parents described difficulties recognising anxiety in their child, mostly due to reduced verbal language use and anxiety behaviours overlapping with other behaviours (e.g. autism characteristics). However, parents also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. We will use the findings of this study to inform future research to develop assessment tools and interventions for anxiety in autistic individuals who use few or no words.

What Works to Reduce Victimization? Synthesizing What We Know and Where to Go From Here

2016 ◽  
Vol 31 (2) ◽  
pp. 285-319 ◽  
Author(s):  
Kathleen A. Fox ◽  
John A. Shjarback
Keyword(s):  
Quality Of Life ◽  
Sexual Abuse ◽  
Intimate Partner Violence ◽  
Partner Violence ◽  
Intimate Partner ◽  
Evidence Based ◽  
Program Evaluations ◽  
What Works ◽  
Future Program

While some attention has been paid to “what works” to reduce crime, little is known about the effectiveness of programs designed to reduce victimization. This study systematically reviews 83 program evaluations to identify what works to (a) reduce victimization, (b) enhance beliefs/attitudes about victims, and (c) improve knowledge/awareness of victimization issues. Evidence-based findings are organized around 4 major forms of victimization, including bullying, intimate partner violence, sexual abuse, and other general forms of victimization. Determining whether certain types of programs can reduce the risk of victimization has important implications for improving people’s quality of life. Based on our findings, we offer several promising directions for the next generation of research on evaluating victimization programs. The goal of this study is to improve the strength of future program evaluations, replications, and other systematic reviews as researchers and practitioners continue to learn what works to reduce victimization.

Ophthalmologist Attitudes regarding Fixed Combination Treatment for Glaucoma in the European Union

2009 ◽  
Vol 19 (4) ◽  
pp. 588-593 ◽  
Author(s):  
William C. Stewart ◽  
Bonnie Kruft ◽  
Lindsay A. Nelson ◽  
Jeanette A. Stewart
Keyword(s):  
Quality Of Life ◽  
European Union ◽  
Intraocular Pressure ◽  
Electronic Mail ◽  
Fixed Combination ◽  
The European Union ◽  
Perceived Safety ◽  
Popular Method ◽  
First Choice

Purpose To survey ophthalmologists in the European Union to determine their fixed combination (FC) preferences. Methods A multiple-choice survey was sent to randomly chosen ophthalmologists throughout the European Union and bordering countries by electronic mail delivery. Ophthalmologists were resent the survey on two more occasions if no response was obtained. Results In total, 50 surveys were received from 530 distributed (9.4% response) from 16 countries. More ophthalmologists prescribed an FC as second (80%) or third choice (64%) therapy than first choice (30%, p=0.0036). As first (p<0.0001) and third choice (p=0.011), the dorzolamide/timolol FC was most commonly prescribed, while as second choice the latanoprost/timolol FC (p<0.0001) was most popular. Overall, 98% (49/50) of doctors believed FC therapy improved patient care most often by better compliance (n=49) and quality of life (n=48, p<0.0001). Most ophthalmologists believed that there was a difference in efficacy between the FC products (32/50, 64%) with the most effective being the bimatoprost/timolol FC (n=12, 24%, p=0.029). However, fewer ophthalmologists perceived safety differences between the products (34/50, 68%). For prostaglandins, dosing time was suggested in the morning by 18 (36%) ophthalmologists and in the evening by 24 (48%) (p=0.35). Conclusions FCs in the European Union are a potentially popular method to reduce intraocular pressure, being prescribed most commonly as second or third choice therapy. The perceived advantages to FC therapy are greater compliance to the medicine and improved patient quality of life.

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