Service user involvement in clinical guideline development and implementation: learning from mental health service users in the UK

The participation of service users and the public in the development of clinical guidelines is increasingly valued in international guideline programmes. This paper extends the findings of Harding et al.'s (2010) exploration of the views of service users who participated in developing NICE mental health guidelines. This analysis considered the relative value of personal versus professional knowledge and experience, the barriers to service users contributing effectively in guideline development, the unspoken 'rules' concerning decision making, and issues of power and group dynamics. We combine these insights with observations from research in guideline development and with advances in the recovery movement and in the shared decision-making clinical model to suggest areas of improvement in guideline development, notably: translating evidence to recommendations, optimizing the acceptability of treatment recommendations to service users, and reconciling different types of knowledge.     

Korean Clinical Practice Guideline for the Diagnosis and Treatment of Insomnia in Adults

Objective We aim to present a clinical guideline for the diagnosis and treatment of insomnia in adults by reviewing and integrating existing clinical guidelines. The purpose of this guideline is to assist clinicians who perform evidence-based insomnia treatment. Methods We selected literature that may be appropriate for use in guideline development from evidence-based practice guidelines that have been issued by an academic or governmental institution within the last five years. The core question of this guideline was made in sentence form including Patient/Problem, Intervention, Comparison, Outcome (PICO) elements. After searching PubMed, EMBASE, and medical guideline issuing agencies, three guidelines were judged to be the most appropriately reviewed, up-to-date, and from trusted sources. Results The Appraisal of Guidelines for Research and Evaluation (AGREE) II tool was used to evaluate the quality of the three clinical guidelines. The final outcome of the guideline development process is a total of 15 recommendations that report the strength of the recommendation, the quality of evidence, a summary of content, and considerations in applying the recommendation. Conclusion It is vital for clinical guidelines for insomnia to be developed and continually updated in order to provide more accurate evidence-based treatments to patients.     

Schizophrenia guidelines across the world: A selective review and comparison

Abstract

Treatment guidelines provide evidence-based recommendations to assist practitioners in specific clinical situations. They are a major tool to assure and enhance treatment quality and to overcome existing disparities. However, guideline quality itself varies and needs to be considered. Based on a former review, schizophrenia guidelines with high methodological quality were identified and examined regarding updated versions. Five guidelines were selected, of which three updates have been newly evaluated with the AGREE instrument. In addition, clinical content regarding seven core topics in schizophrenia treatment decisions was compared. Guideline quality on average is good, with highest AGREE scores for the NICE guideline. Updating of the German guideline resulted in noticeable quality improvements. Regarding content, recommendations largely correspond in five areas across guidelines, whereas discrepancies or vagueness exist in two areas due to newly emerging (drug choice) or still restricted evidence (duration of antipsychotic treatment). There are increasing efforts to develop guidelines with improved quality. Also, there is a need to equalize and improve healthcare quality across countries. Since many formal and content-related issues are ‘universal’, development of trans-national guidelines seems indicated. Nevertheless, core guideline recommendations should be adapted to regional conditions using available tools for adaptation.     

Facilitators and Barriers to Service User Involvement in Mental Health Guidelines: Lessons from The Netherlands

This study is the first in-depth qualitative study of service user involvement in the development of multidisciplinary mental health guidelines in the Netherlands. The study comprised a desk study of guidelines (n = 12) and case studies of service user involvement in five guidelines using document analysis, interviews (n = 24) and observations. The desk study shows that all multidisciplinary mental health guidelines have taken service user perspectives into account to some extent. The five guideline case studies led to the identification of ten main themes. Findings will assist guideline developers in making early, informed decisions on involving service users effectively.     

Quality,bias and service user experience in healthcare: 10 years of mental health guidelines at the UK National Collaborating Centre for Mental Health

Abstract

The guideline programme developed by the National Collaborating Centre for Mental Health (NCCMH) for the National Institute for Health and Clinical Excellence (NICE) is probably the most comprehensive and methodologically advanced mental health guideline programme in the world, covering most adults and children with mental health problems and addressing a broad range of pharmacological and psychological/psychosocial interventions. As the success of the NICE programme gains momentum, its influence in the National Health Service (NHS) grows. If guidelines contain systematic bias the effects will be widespread. Over the last 10 years the NCCMH has recognized imperfections and patterns of bias in the way that evidence is generated and included in guidelines, including psychological/psychosocial interventions and drug treatments. The pharmaceutical industry remains a major source of bias through selective reporting and publishing, and represents a threat to ensuring the evidence underpinning guidelines and clinical decision-making is as complete and reliable as possible.

The inclusion of service users into guideline development at the NCCMH has developed in parallel to the identification and understanding of evidential bias, and is now becoming an important focus for high-quality guidelines which are becoming increasingly person-centred. For mental health this is as radical as the integration of psychological/psychosocial treatments into what has, for many years, been a largely medical domain. The future role of service users in monitoring their own experience of care and ensuring that trusts are accountable to them is now a real possibility and is likely to have an impact upon the traditional power relations in mental health and the stigma usually associated with psychiatric problems.     

WFSBP guidelines on how to grade treatment evidence for clinical guideline development

Objective and methods: This paper reviews sources of data typically used in guideline development, available grading systems, their pros and cons, and the methods for evaluating risks of bias in publications, and proposes a revised method for grading evidence and recommendations for use in development of clinical treatment guidelines.

Results: The new World Federation of Societies of Biological Psychiatry (WFSBP) grading system allows guideline developers to follow a multi-step approach of defining levels of evidence, applying criteria for grading (define the acceptability) and the grading of recommendations.

Conclusions: Further, these updated WFSBP recommendations for rating evidence and treatment recommendations provide a grading system that takes into account potential biases in sources of evidence in arriving at final ratings that are likely more clinically meaningful and pragmatic and thus should be used for the development of future treatment guidelines.     

The role of group decision making processes in the creation of clinical guidelines

Abstract

Guideline development groups are an integral part of evidence-based healthcare and will remain so for the foreseeable future. There is a need for the efficient production of high-quality guidelines both to ensure high standards of care and to conserve resources. Social psychological research on group processes provides valuable information that can be applied to studying the functioning of guideline development groups, including the methods they use to develop recommendations. This article describes four key concepts in the group process literature: information sharing, systematic processing, group development, and group potential productivity. We evaluate their importance for guideline development groups and conclude with methodological suggestions for the study of these complex processes.     

A comparison of UK and US guidelines for drug treatment in borderline personality disorder

Abstract

The UK and USA differ considerably in their guidance regarding the use of drug treatment for borderline personality disorder, but generally agree over the use of psychological treatment. The 2009 UK guidelines from the National Institute for Health and Clinical Excellence (NICE) do not recommend any form of drug treatment except in a crisis with the intention of ceasing such treatment shortly afterwards. The US guidelines from the American Psychiatric Association (APA), published in 2001, are much more positive and suggest that there is a place for selective serotonin reuptake inhibitors (SSRIs), mood stabilizers and antipsychotic drugs as adjunctive treatments in borderline personality disorder. The guidelines are summarized and two main reasons for the differences identified. First, the separation of the borderline personality group into those with ‘affective dysregulation’, ‘impulsive behaviour dyscontrol’ and ‘cognitive–perceptual’ symptoms in the US guidelines was felt by the guideline development group for the NICE guideline to be a post hoc classification not supported by any other evidence. Second, the threshold of evidence necessary for making recommendations was much higher for the UK than the US guideline. Both guidelines recognize that we need more substantial trials, preferably independent of the pharmaceutical industry, before we can have any real confidence in our recommendations.     

EPA guidance on building trust in mental health services

PurposeTo advance mental health care use by developing recommendations to increase trust from the general public and patients, those who have been in contact with services, those who have never been in contact and those who care for their families in the mental health care system.MethodsWe performed a systematic literature search and the retrieved documents were evaluated by two independent reviewers. Evidence tables were generated and recommendations were developed in an expert and stakeholder consensus process.ResultsWe developed five recommendations which may increase trust in mental health care services and advance mental health care service utilization.DiscussionTrust is a mutual, complex, multidimensional and dynamic interrelationship of a multitude of factors. Its components may vary between individuals and over time. They may include, among others, age, place of residence, ethnicity, culture, experiences as a service user, and type of disorder. For mental health care services, issues of knowledge about mental health services, confidentiality, continuity of treatment, dignity, safety and avoidance of stigma and coercion are central elements to increase trust.ConclusionEvidence-based recommendations to increase mutual trust of service users and psychiatrists have been developed and may help to increase mental health care service utilization.     

Guidelines across the health and social care divides: the example of the NICE-SCIE dementia guideline

Increasingly, mental health services are delivered through multidisciplinary teams and settings. This creates particular challenges for the development of evidence-based practice guidelines when different professional groups represented within teams might have different traditions and cultures in relation to what counts as 'evidence', and how that might be synthesized to produce guidance that supports best practice across professional divides. These challenges are explored in relation to integration between health and social care services, where social work in particular has traditionally expressed scepticism about guideline development where it does not incorporate knowledge drawn from qualitative research and perspectives of stakeholders such as service users and carers. This article takes the NICE-SCIE guideline on dementia care as an exemplar of how an integrated process of guideline development can deliver guidance for best practice across integrated mental health services. Finally, some of the issues still facing inter-professional guideline development are considered, and pointers given to eclectic approaches that are beginning to emerge from within social work.     

Implementation of Evidence-Based Tobacco Use Cessation Guidelines in Managed Care Organizations

Background: Although managed care organizations (MCOs) may be optimal settings for implementing tobacco use cessation clinical guidelines, such guidelines remain poorly implemented in many MCO settings.Purpose: We examined issues related to the implementation of guidelines in MCOs, to provide examples of studies that have addressed issues related to guideline implementation and to suggest ways behavioral medicine researchers can play a role in examining issues of how guidelines can be better implemented.Methods: Surveys of clinical guideline implementation, studies from the Robert Wood Johnson Foundation addressing tobacco use cessation in a managed care database, selected to illustrate issues related to system-wide implementation.Results: Surveys show that effective tobacco use cessation interventions remain underutilized in MCOs. A few studies have evaluated and shown the benefit of insurance coverage for tobacco use and dependence treatments, clinician reimbursement and leadership incentives, practice feedback, and leveraging administrative data to create tobacco use tracking systems. The studies also point to the need for large-scale, multidisciplinary, methodologically rigorous studies that allow one to isolate the effects of promising strategies as well as to explore synergistic effects as different system changes are combined.Conclusions: Tobacco use cessation guidelines need to be better implemented in MCOs. Behavioral medicine research needs to move beyond treatment efficacy and effectiveness studies to focus on rigorous evaluations of these and other strategies to enhance guideline implementation and dissemination. This research was supported by grants from the Tobacco-Related Disease Research Program (Taylor) and from the Robert Wood Johnson Foundation (Taylor and Curry).     

UK art therapy practice-based guidelines for children and adults with learning disabilities

ABSTRACT

Art therapy is a form of psychotherapy that uses art media as its primary mode of communication. Having skill and experience in art is not a pre-requirement for people to benefit from art therapy. Making art work can offer the opportunity for expression and communication within a psychological therapy for people who find it difficult to express their thoughts and feelings verbally, and it is an accessible approach for children and adults with learning disabilities. An estimated 20% of art therapists working in the UK have some involvement with children or adults who have learning disabilities. These clinical practice guidelines were devised within the UK by the British Association of Art Therapists. A guideline development group was formed by the Learning Disability Special Interest Group and a national consultation was carried out among its membership. Ten overarching guideline recommendations for clinical practice were identified, namely ‘working relationships’, ‘communication’, ‘support networks’, ‘managing risk and vulnerability’, ‘establishing therapy agreements’, ‘assessment, formulation, and therapeutic goals’, ‘working creatively and flexibly’, ‘working psychotherapeutically’, ‘monitoring progress’ and ‘professional responsibilities and self-care’. The published art therapy practice-based guidelines for children and adults with learning disabilities are an example of a clinical consensus on current best practice in the UK.     

Clinical practice guidelines in Japan: toward their appropriate use and diffusion]

In Japan, the governmental report on health technology assessment in 1999 referred to the need to develop evidence-based clinical practice guidelines. The Ministry of Health and Welfare established priorities for the development of clinical practice guidelines, and started several projects. About 20 clinical practice guidelines are to be developed by 2004. However, what "guideline" means and how "guidelines" work are unclear because the word "guideline" is ambiguous in Japan. Although it is generally accepted that "directives are stronger than recommendations, which are stronger than guidelines" in the western countries, Japanese people do not usually recognize these distinctions and tend to regard guidelines as mandatory directives even in individual cases. Patients, consumers and legal professionals may overestimate the authority of clinical practice guidelines when they see them. What clinical practice guidelines are, or are not should be clarified appropriately. Autumn 2003, the Japan Council for Quality Health Care will open the information service that provides practice guidelines and related literature. This will be accessible to both healthcare professionals and the general public. Much remains to be done to bring other stakeholders to the table. All of Japanese society can, and needs to, participate in the process of developing a consensus on clinical practice guidelines.     

The role of antiplatelet therapy in the management of ischemic stroke: implementation of guidelines in current practice

Abstract

Objective: To review and discuss evidence-based guideline recommendations for the use of antiplatelet agents for secondary prevention in patients with ischemic stroke or TIA.

Methods: A literature search was conducted on PubMed through August 2007 using combinations of the following search terms: aspirin, clopidogrel, dipyridamole plus aspirin, transient ischemic attack, secondary prevention, stroke and guidelines.

Results: Modification of risk factors such as hypertension, diabetes, hypercholesterolemia, cigarette smoking and obesity are fundamental to stroke management. Antiplatelet therapy is highly effective in reducing the risk of recurrent vascular events and is recommended over oral anticoagulants for non-cardioembolic stroke. Evidence from head-to-head comparative clinical trials versus aspirin monotherapy has shown that clopidogrel and the combination of aspirin plus dipyridamole are safe and effective therapeutic options.

Discussion: Despite the availability of evidence-based guidelines, recommended interventions are largely underutilized. Quality improvement initiatives such as the ASA's Get with the Guidelines – Stroke and the UCLA stroke PROTECT Program have demonstrated effectiveness in increasing adherence to recommended therapies and thereby improving patient outcomes.     

A systematic review of clinical guidelines on choice,dose, and duration of antipsychotics treatment in first- and multi-episode schizophrenia

Abstract

Clinical guidelines provide evidence-based recommendations to regulate pharmacological treatment of psychotic disorders. However, the quality of evidence, country of origin, and publication dates of such guidelines vary, which leads to discrepancies between recommendations. This systematic review aimed to examine consensus and disparities between clinical recommendations on the choice, dose, and duration of antipsychotic treatment for first- and multi-episode schizophrenia patients. A literature search through The Cochrane Library, Embase, Medline, PsycINFO, PubMed, Scopus, Web of Sciences, and relevant bibliographies revealed 24 guidelines that met the inclusion criteria. The guidelines indicated mostly consistent recommendations regarding the optimal dose range of antipsychotics, while guidance with regards to the choice and duration of treatment remains somewhat controversial. Current trends in guidelines emphasize that there is simply no ‘one-size-fits-all’ method to manage schizophrenia patients. Further research is needed not only to address discrepancies between guidelines, but also to justify the gap between theory and practice.     

A systematic review and evaluation of post-stroke depression clinical practice guidelines

ObjectivePost-stroke depression is a depressive mood disorder that follows a cerebrovascular accident and is a burden on stroke patients. Its management is included in clinical practice guidelines focused on stroke, and the recommended treatment is selective serotonin reuptake inhibitors in conjunction with psychotherapy. Clinical practice guidelines are recommendations used to standardize best medical practice, but there is no current evaluation of guidelines containing post stroke depression recommendations. Thus, the objective is to appraise the selected guidelines manner of development and quality.Materials and MethodsA systematic literature review across three databases and a manual google search was performed to collect guidelines that included recommendations on the management of post-stroke depression. 1236 guidelines were screened, and 27 were considered for inclusion. Considered guidelines were manually reviewed by the authors, and ultimately, 7 met inclusion criteria. The appraisal of guidelines for research and evaluation was used to evaluate these guidelines’ recommendations around post-stroke depression.ResultsThree guidelines met the threshold considered “High”, with all of them having five or more quality domains eclipse the cutoff score of 70%. Across all guidelines, the highest scoring domains were “Scope and Purpose”, “Clarity of Presentation”, and “Editorial Independence” with scores of 76.98%, 73.81%, and 91.36% respectively. The lowest scoring domains were “Applicability”, “Rigor of Development”, and “Stakeholder Involvement” with respective scores of 58.73%, 54.02%, and 43.90%.ConclusionsThe domains “Applicability”, “Rigor of Development,” and “Stakeholder Involvement” were the lowest scoring domains. These specific domains represent areas in which future guidelines could be more developed.     

A Comprehensive Practice Guideline for Magnetic Resonance Imaging Compatibility in Implanted Neuromodulation Devices

ObjectivesThe evolution of neuromodulation devices in order to enter magnetic resonance imaging (MRI) scanners has been one of understanding limitations, engineering modifications, and the development of a consensus within the community in which the FDA could safely administer labeling for the devices. In the initial decades of neuromodulation, it has been contraindicated for MRI use with implanted devices. In this review, we take a comprehensive approach to address all the major products currently on the market in order to provide physicians with the ability to determine when an MRI can be performed for each type of device implant.Materials and MethodsWe have prepared a narrative review of MRI guidelines for currently marketed implanted neuromodulation devices including spinal cord stimulators, intrathecal drug delivery systems, peripheral nerve stimulators, deep brain stimulators, vagal nerve stimulators, and sacral nerve stimulators. Data sources included relevant literature identified through searches of PubMed, MEDLINE/OVID, SCOPUS, and manual searches of the bibliographies of known primary and review articles, as well as manufacturer-provided information.ResultsGuidelines and recommendations for each device and their respective guidelines for use in and around MR environments are presented.ConclusionsThis is the first comprehensive guideline with regards to various devices in the market and MRI compatibility from the American Society of Pain and Neuroscience.     

Mental health supported accommodation services in England and in Italy: a comparison

Purpose

England and Italy are considered pioneers in the development of community mental health services. Both have implemented supported accommodation services for those with more complex needs, which can be broadly categorized into three main types with similar specification. The aim of this study was to compare the characteristics of these services and their users in England and Italy.

Methods

Data from two cross-sectional surveys of supported accommodation services undertaken across England and in Verona, Italy (England—619 service users from 87 services; Verona—167 service users from 25 services) were compared.

Results

Service users in the two samples had similar socio-demographic and clinical characteristics; most were male, unmarried and unemployed, with a primary diagnosis of schizophrenia or other psychosis and over 15 years contact with mental health services. Supported accommodation occupancy was high in both samples. The actual length of stay was greater than the expected length of stay for all three service types but overall turnover was similar between countries (p = 0.070). Across services, total needs and quality of life were higher for Italian compared to English service users (p < 0.001 for both) but, unmet needs were lower amongst English service users (p < 0.001). Around 40% in both samples moved to more independent accommodation successfully within 30 months.

Conclusions

England and Italy have similar mental health supported accommodation pathways to assist those with more complex needs to gain skills for community living, but individuals tend to require longer than expected at each stage.

     

Schizophrenia guidelines across the world: a selective review and comparison

Treatment guidelines provide evidence-based recommendations to assist practitioners in specific clinical situations. They are a major tool to assure and enhance treatment quality and to overcome existing disparities. However, guideline quality itself varies and needs to be considered. Based on a former review, schizophrenia guidelines with high methodological quality were identified and examined regarding updated versions. Five guidelines were selected, of which three updates have been newly evaluated with the AGREE instrument. In addition, clinical content regarding seven core topics in schizophrenia treatment decisions was compared. Guideline quality on average is good, with highest AGREE scores for the NICE guideline. Updating of the German guideline resulted in noticeable quality improvements. Regarding content, recommendations largely correspond in five areas across guidelines, whereas discrepancies or vagueness exist in two areas due to newly emerging (drug choice) or still restricted evidence (duration of antipsychotic treatment). There are increasing efforts to develop guidelines with improved quality. Also, there is a need to equalize and improve healthcare quality across countries. Since many formal and content-related issues are 'universal', development of trans-national guidelines seems indicated. Nevertheless, core guideline recommendations should be adapted to regional conditions using available tools for adaptation.