scholarly journals DSD and Professionalism from a Multilateral View: Supplementing the Consensus Statement on the Basis of a Qualitative Survey

2012 ◽  
Vol 2012 ◽  
pp. 1-8 ◽  
Author(s):  
Jürg C. Streuli ◽  
Birgit Köhler ◽  
Knut Werner-Rosen ◽  
Christine Mitchell

Treatment and support of a child with DSD calls for experience and expertise in diagnosis, surgical techniques, understanding of psychosocial issues, and recognizing and accepting the significance of individual values of children, families, and support groups. The range of what is considered “appropriate” care and treatment is still very broad and critics point at major gaps between ethical guidelines and current clinical practice. Based on a qualitative study with 27 members of multidisciplinary teams and support groups, we supplement the professional consensus statements and current ethical guidelines with 14 requirements from four different perspectives, to characterize more fully the responsible treatment and support of children and families affected by DSD. Overall, our findings highlight the importance of close collaborations between different experts and a shift from the often simplified dispute about genital surgeries to a more holistic perspective with a long-term management strategy, which should serve as a cornerstone not only for clinical practice but also for future research and evaluation studies.

Gut ◽  
2020 ◽  
Vol 69 (5) ◽  
pp. 801-810 ◽  
Author(s):  
Craig Haifer ◽  
Colleen R Kelly ◽  
Sudarshan Paramsothy ◽  
David Andresen ◽  
Lito E Papanicolas ◽  
...  

ObjectiveFaecal microbiota transplantation (FMT) has proved to be an extremely effective treatment for recurrent Clostridioides difficile infection, and there is interest in its potential application in other gastrointestinal and systemic diseases. However, the recent death and episode of septicaemia following FMT highlights the need for further appraisal and guidelines on donor evaluation, production standards, treatment facilities and acceptable clinical indications.DesignFor these consensus statements, a 24-member multidisciplinary working group voted online and then convened in-person, using a modified Delphi approach to formulate and refine a series of recommendations based on best evidence and expert opinion. Invitations to participate were directed to Australian experts, with an international delegate assisting the development. The following issues regarding the use of FMT in clinical practice were addressed: donor selection and screening, clinical indications, requirements of FMT centres and future directions. Evidence was rated using the GRADE (Grading of Recommendations Assessment, Development and Evaluation) system.ResultsConsensus was reached on 27 statements to provide guidance on best practice in FMT. These include: (1) minimum standards for donor screening with recommended clinical selection criteria, blood and stool testing; (2) accepted routes of administration; (3) clinical indications; (4) minimum standards for FMT production and requirements for treatment facilities acknowledging distinction between single-site centres (eg, hospital-based) and stool banks; and (5) recommendations on future research and product development.ConclusionsThese FMT consensus statements provide comprehensive recommendations around the production and use of FMT in clinical practice with relevance to clinicians, researchers and policy makers.


2020 ◽  
Vol 40 (04) ◽  
pp. 420-429
Author(s):  
Michael Nagler

AbstractThe use of laboratory biomarkers in clinical practice is rapidly increasing. Laboratory tests are, however, rarely evaluated adequately before implementation, and the utility of many tests is essentially unclear. An important reason for this knowledge gap is that a comprehensive and generally accepted methodological framework supporting evaluation studies is essentially lacking. Researchers, clinicians, and decision-makers are often not aware of the methodological tools available and face problems with the appraisal of a test's utility. With the present article, I aim to summarize current concepts and methodological tools and propose a framework for a phased approach that could be used in future evaluation projects. Future research will refine this suggested framework by identifying problems in current evaluation projects, specifying methodological criteria for all phases, as well as developing advanced methodological tools.


2019 ◽  
Vol 35 (S1) ◽  
pp. 60-60
Author(s):  
Yolanda Triñanes Pego ◽  
Lucía Varela ◽  
José Mazaira-Castro ◽  
Maria José Faraldo Vallés

IntroductionIn the past decades the community-based participatory research method known as PhotoVoice has gained relevance, but there are few published studies on its application in the field of health technology assessment (HTA) and clinical practice guidelines (CPGs). The aim of this presentation was to describe a PhotoVoice project linked to a CPG on major depression in children and adolescents.MethodsThe design of the study was adapted to the main objective, which was to enhance the understanding of major depression and improve clinical practice with the contributions of clinicians, methodologists, and patients. Seven adolescents and ten of their family members participated in the study through PhotoVoice sessions and focus groups. The audio recordings of all sessions were transcribed verbatim and coded, and a thematic analysis was undertaken.ResultsSix themes emerged: (i) a lack of understanding and information about depression in childhood and adolescence; (ii) the importance of support groups; (iii) the need to favor early care and access to services; (iv) the adaptation of therapeutic strategies tailored to individual needs; (v) the sensitivity of professionals; and (vi) fostering interaction between the health and education systems. Photographic exhibitions were planned to share the main results. These exhibitions were promoted to increase public awareness and reduce stigmatization, and to reach clinicians and policy makers. From a methodological point of view, the use of PhotoVoice in this study helped to effectively incorporate the lived experiences, concerns, and preferences of patients and their relatives into the CPG. The study also confirmed the value of photographs and participatory methods. The main limitations and strengths of the study, as well as suggestions for future research, are also outlined.ConclusionsPhotoVoice is a flexible, effective, and innovative method of obtaining information about patients’ perspectives and experiences, and it offers the added value of being able to reach the main stakeholders, including policymakers and the public.


2015 ◽  
Vol 40 (4) ◽  
pp. 423-435 ◽  
Author(s):  
Tsurayuki Murakami ◽  
Kevin Murray

Background:Dysvascularity is the main cause of lower limb amputations in Scotland, and there is an insignificant proportion (1.7%) of knee disarticulations, despite the benefits of amputation.Objectives:The outcomes of knee disarticulation and its associated surgical techniques will be evaluated based on healing, reamputations, functional outcomes, prosthetic ambulation and gait biomechanics to determine whether a greater rate of knee disarticulations can be justified among dysvascular patients.Study design:Systematic review.Methods:Key electronic databases were searched for the relevant literature based on a pre-specified eligibility criterion.Results:The 17 articles included in this review were appraised for their quality, and key findings are extracted.Conclusion:Healing rates are favourable, but there is a need for appropriate amputation level selection to prevent reamputations. Knee disarticulation patients have better maintenance of independent living status than transfemoral patients, but overall prosthetic ambulation rates are inconsistent. In terms of gait biomechanics of knee disarticulation, there are some positive indications, but the evidence is insubstantial. A stronger body of evidence is required in this subject field, and recommendations are made for future research – Scottish Intercollegiate Guidelines Network Grade of Recommendation: C.Clinical relevanceThis review aims to inform the multidisciplinary teams involved in the rehabilitation of dysvascular amputees about evidence-based outcomes following knee disarticulation. This knowledge will be beneficial when formulating treatment pathways for this vulnerable population group.


2019 ◽  
Vol 6 (4) ◽  
pp. 326-338 ◽  
Author(s):  
Sarkhell Radha ◽  
Jonathan Hutt ◽  
Ajay Lall ◽  
Benjamin Domb ◽  
T Sean Lynch ◽  
...  

Abstract Arthroscopic procedures to treat hip pathologies such as femoroacetabular impingement (FAI) syndrome are now established in mainstream orthopaedic practice. Surgical techniques, rehabilitation protocols and outcomes are widely published. However, consensus on standards of practice remains to be determined. The International Hip Preservation Society (ISHA) has undertaken a research study to identify current areas of consensus across the global hip preservation community. The study focussed on consensus statements on the operative steps in the arthroscopic treatment of FAI syndrome. The study methodology was an online Delphi consensus method to collect aggregate opinions from hip preservation surgeons worldwide. Phase 1 of the planned three-phase study is presented here—focusing on consensus statements on the operative steps in the arthroscopic treatment of FAI syndrome. Ninety-nine statements achieved >80% consensus from a panel of 165 surgeons from six continents. This study is the first to evaluate global consensus on the arthroscopic treatment of FAI syndrome, as well as highlighting areas of contention and avenues for future research.


2002 ◽  
Author(s):  
Carolyn M. Mazure ◽  
Laura J. Bierut ◽  
Steven D. Hollon ◽  
Susan G. Kornstein ◽  
Charlotte Brown

1999 ◽  
Vol 82 (S 01) ◽  
pp. 109-111 ◽  
Author(s):  
Raymond Verhaeghe

SummaryIntra-arterial thrombolytic therapy has replaced systemic intravenous infusion of thrombolytic agents as a treatment modality for arterial occlusion in the limbs. Several catheter-guided techniques and various infusion methods and schemes have been developed. At present there is no scientific proof of definite superiority of any agent in terms of efficacy or safety but clinical practice favours the use of urokinase or alteplase. Studies which compared thrombolysis to surgical intervention suggest that thrombolytic therapy is an appropriate initial management in patients with acute occlusion of a native leg artery or a bypass graft. Underlying causative lesions are treated in a second step by endovascular or open surgical techniques. Severe bleeding is the most feared complication: the risk of hemorrhagic stroke is 1-2%.


2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1271.1-1272
Author(s):  
S. Derham ◽  
J. Lewis ◽  
E. Dures ◽  
F. Cramp

Background:Adults with fibromyalgia frequently report symptoms of cognitive dysfunction, often referred to as fibrofog. However primary research exploring cognitive dysfunction in the lives of adults with fibromyalgia is very limited (Kravitz and Katz, 2015).Objectives:The aim of this review was to (i) synthesise the qualitative literature on the lived experiences of cognitive dysfunction in adults with fibromyalgia, (ii) develop common themes through thematic analysis and (iii) identify knowledge gaps to inform future research and clinical practice in this area.Methods:Seven electronic databases (MEDLINE, Embase, CINAHL, PsycINFO, Amed, Scopus and OpenGrey), reference lists of key articles and two high impact qualitative journals were searched from 1990 to November 2018. Articles were eligible for inclusion if they reported primary qualitative data exploring the experiences of cognitive dysfunction in adults with fibromyalgia. Included studies were appraised using the Critical Appraisal Skills Programme (CASP) qualitative checklist and extracted data analysed using narrative synthesis. SD conducted critical appraisal and data extraction on all included studies. FC, JL and ED reviewed five papers each. All papers were reviewed by two co-authors. Of the 1413 records identified, 15 studies were selected for inclusion.Results:These studies included 208 women and 22 men with fibromyalgia, aged 18 to 72 years and representing seven different countries. Duration of diagnosis was four months to 34 years. Fourteen studies used interviews and one used focus groups. None of the included studies focussed exclusively on cognitive function in adults with fibromyalgia. Three studies identified themes specific to cognitive dysfunction and fibromyalgia symptoms. The remaining 12 studies presented relevant data intertwined with the overall lived experiences of fibromyalgia.Cognitive dysfunction, as a part of fibromyalgia, was often unpredictable. Problems with memory and concentration that were most commonly reported were emotionally distressing and affected functional and vocational activities. Participants found communication effortful, with a negative impact on work, leisure and social activities. Stress, fear and worry around perceived cognitive changes were commonly expressed. Lost employment or changed work roles and relationships, due to cognitive difficulties, had negative impacts for many participants. The terms cognitive dysfunction and fibrofog were used interchangeably within the studies, but lacked common definition. This introduced uncertainty around whether participants and authors were describing the same phenomenon.Conclusion:Adults with fibromyalgia experience unpredictable and emotionally impactful difficulties related to cognitive dysfunction. Functional impact was broad-reaching, particularly around work ability and lost employment opportunities. It is unclear how cognitive symptoms in fibromyalgia related to co-morbid symptoms such as pain, fatigue and poor sleep. Further research focusing on the full impact of cognitive function on the lives of adults with fibromyalgia is recommended to inform clinical practice. Research to establish clarity of definition of the terms cognitive dysfunction and fibrofog within fibromyalgia is highly recommended.References:[1]Kravitz H, Katz R. Fibrofog and fibromyalgia: a narrative review and implications for clinical practice. Rheumatology International. 2015;35(7):1115-25.Acknowledgments:This work is supported by the National Institute for Heath Research [ICA-PCAF-2018-01-078 to SD]Disclosure of Interests:Sandra Derham: None declared, Jenny Lewis: None declared, Emma Dures Grant/research support from: Independent Learning Grant from Pfizer, combined funding for a research fellow from Celgene, Abbvie and Novartis, Paid instructor for: A fee from Novartis to deliver training to nurses., Fiona Cramp: None declared


Liver Cancer ◽  
2021 ◽  
pp. 1-43
Author(s):  
Masatoshi Kudo ◽  
Yusuke Kawamura ◽  
Kiyoshi Hasegawa ◽  
Ryosuke Tateishi ◽  
Kazuya Kariyama ◽  
...  

The Clinical Practice Manual for Hepatocellular Carcinoma was published based on evidence confirmed by the Evidence-based Clinical Practice Guidelines for Hepatocellular Carcinoma along with consensus opinion among a Japan Society of Hepatology (JSH) expert panel on hepatocellular carcinoma (HCC). Since the JSH Clinical Practice Guidelines are based on original articles with extremely high levels of evidence, expert opinions on HCC management in clinical practice or consensus on newly developed treatments are not included. However, the practice manual incorporates the literature based on clinical data, expert opinion, and real-world clinical practice currently conducted in Japan to facilitate its use by clinicians. Alongside each revision of the JSH Guidelines, we issued an update to the manual, with the first edition of the manual published in 2007, the second edition in 2010, the third edition in 2015, and the fourth edition in 2020, which includes the 2017 edition of the JSH Guideline. This article is an excerpt from the fourth edition of the HCC Clinical Practice Manual focusing on pathology, diagnosis, and treatment of HCC. It is designed as a practical manual different from the latest version of the JSH Clinical Practice Guidelines. This practice manual was written by an expert panel from the JSH, with emphasis on the consensus statements and recommendations for the management of HCC proposed by the JSH expert panel. In this article, we included newly developed clinical practices that are relatively common among Japanese experts in this field, although all of their statements are not associated with a high level of evidence, but these practices are likely to be incorporated into guidelines in the future. To write this article, coauthors from different institutions drafted the content and then critically reviewed each other’s work. The revised content was then critically reviewed by the Board of Directors and the Planning and Public Relations Committee of JSH before publication to confirm the consensus statements and recommendations. The consensus statements and recommendations presented in this report represent measures actually being conducted at the highest-level HCC treatment centers in Japan. We hope this article provides insight into the actual situation of HCC practice in Japan, thereby affecting the global practice pattern in the management of HCC.


2021 ◽  
Vol 14 ◽  
Author(s):  
Alison Bennetts

Abstract Treatment recommendations for mental health are often founded on diagnosis-specific models; however, there are high rates of co-morbidity of mental health presentations and growing recognition of the presence of ‘transdiagnostic processes’ (cognitive, emotional or behavioural features) seen across a range of mental health presentations. This model proposes a novel conceptualisation of how transdiagnostic behaviours may maintain co-morbid mental health presentations by acting as a trigger event for the cognitive biases specific to each presentation. Drawing on existing evidence, psychological theory and the author’s clinical experience, the model organises complex presentations in a theory-driven yet accessible manner for use in clinical practice. The model offers both theoretical and clinical implications for the treatment of mental health presentations using cognitive behavioural approaches, positing that transdiagnostic behaviours be the primary treatment target in co-morbid presentations. Key learning aims (1) To understand the strengths and limitations of existing transdiagnostic CBT formulation models. (2) To learn about a novel, transdiagnostic and behaviourally focused formulation for use in clinical practice. (3) To understand how to use the tool in clinical practice and future research.


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