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1.
BMC Health Serv Res ; 24(1): 272, 2024 Mar 04.
Artigo em Inglês | MEDLINE | ID: mdl-38439061

RESUMO

BACKGROUND: People with cancer have high information needs; however, they are often inadequately met. Patient versions of clinical practice guidelines (PVGs), a special form of evidence-based information, translate patient-relevant recommendations from clinical practice guidelines into lay language. To date, little is known about the experience of PVGs from healthcare providers' perspective in healthcare. This study aims to investigate the use, applicability, and dissemination of PVGs in oncology from the healthcare providers' perspective in Germany. METHODS: Twenty semi-structured telephone interviews were conducted with oncological healthcare providers in Germany between October and December 2021. Interviews were recorded and transcribed verbatim. Mayring's qualitative content analysis with MAXQDA software was utilised to analyse the data. RESULTS: A total of 20 healthcare providers (14 female, 6 male), mainly working as psychotherapists/psycho-oncologists and physicians, participated. Most participants (75%) were aware of the existence of PVGs. The content was predominantly perceived as comprehensible and relevant, whereas opinions on the design and format were mixed. The perceived lack of up-to-date information limited participants' trust in the content. Most felt that PVGs positively impact healthcare owing to the fact that they improve patients' knowledge about their disease. Additionally, PVGs served as a guide and helped healthcare providers structure physician-patient talks. Healthcare provider's unawareness of the existence of PVGs was cited as an obstructive factor to its dissemination to patients. CONCLUSION: Limited knowledge of the existence of PVGs among healthcare providers, coupled with alternative patient information, hinders the use and dissemination of PVGs in healthcare. However, the applicability of PVGs seemed to be acceptable owing to their content and good comprehensibility, especially with respect to physician-patient communication.


Assuntos
Pessoal de Saúde , Médicos , Humanos , Feminino , Masculino , Oncologia , Alemanha , Conscientização
2.
Z Evid Fortbild Qual Gesundhwes ; 184: 7-17, 2024 Mar.
Artigo em Alemão | MEDLINE | ID: mdl-38238131

RESUMO

BACKGROUND: Evidence-based guideline and vaccination recommendations should continuously be updated to appropriately support health care decisions. However, resources for updating guidelines are often limited. The aim of this project was to develop a list of criteria for the prospective assessment of the need for updating individual guideline or vaccination recommendations, which can be applied from the time a guideline or guideline update is finalised. METHODS: In this article we describe the development of the AGIL criteria (Assessment of Guidelines for Updating Recommendations). The AGIL criteria were developed by experienced scientists and experts in the field of guideline development in a multi-step process. The five steps included: 1) development of an initial list of criteria by the project team; 2) online survey of guideline experts on the initial version of the criteria list; 3) revision of the criteria list based on the results of the online survey; 4) workshop on the criteria list at the EbM Congress 2023; 5) creation of version 1.0 of the AGIL criteria based on the workshop results. RESULTS: The initial list included the following three criteria: 1) relevance of the question 2) availability of new relevant evidence, and 3) impact of potentially new evidence. The response rate of the online survey for fully completed questionnaires was 31.0% (N=195; 630 guideline experts were contacted by email). For 90.3% (n=176) of the respondents, the criteria list included all essential aspects for assessing the need for updating guideline recommendations. More than three quarters of respondents rated the importance of the three criteria as "very important" or "important" (criteria 1-3: 75.3%, 86.1%, 85.2%) and - with the exception of criterion 1 - comprehensibility as "very comprehensible" or "comprehensible" (criteria 1-3: 58.4%, 75.9%, 78.5%). The results of the online survey and the workshop generally confirmed the three criteria with their two sub-questions. The incorporation of all feedback resulted in the AGIL criteria (version 1.0), recapping: 1) relevance of the question regarding a) PICO components and b) other factors, e.g. epidemiological aspects; 2) availability of new evidence a) on health-related benefits and harms and b) on other decision factors, e.g. feasibility, acceptability; 3) impact of new evidence a) on the certainty of evidence on which the recommendation is based and b) on the present recommendation, e.g. DISCUSSION: The moderate response rate of the online survey may have limited its representativeness. Nevertheless, we consider the response rate to be satisfactory in this research context. The inclusion of many experts in the online survey and the EbM Congress workshop is a strength of the project and supports the quality of the results. CONCLUSIONS: The AGIL criteria provide a structured guidance for the prospective assessment of the need for updating individual guideline recommendations and other evidence-based recommendations. The implementation and evaluation of the AGIL criteria 1.0 in a field test is planned.


Assuntos
Atenção à Saúde , Humanos , Estudos Prospectivos , Alemanha
3.
BMC Health Serv Res ; 24(1): 78, 2024 Jan 16.
Artigo em Inglês | MEDLINE | ID: mdl-38229078

RESUMO

BACKGROUND: Several guideline organizations produce patient versions of clinical practice guidelines (PVGs) which translate recommendations into simple language. A former study of our working group revealed that few guideline organizations publish their methods used to develop PVGs. Clear definitions of PVGs do not prevail and their purposes often remain unclear. We aimed to explore experts' perspectives on developing, disseminating and implementing PVGs to discuss and incorporate these experiences when consenting on methodological guidance and further improving PVGs. METHODS: We conducted 17 semi-structured telephone interviews with international experts working with PVGs from September 2021 through January 2022. We conducted the interviews in English or German, they were recorded and transcribed verbatim. We utilized Mayring's qualitative content analysis with MAXQDA software to analyze the data. RESULTS: In two interviews two participants were interviewed at the same time. This resulted in a total of 19 participants from 16 different organizations and eight different countries participated. Most were female (16/19) and their experience in working with PVGs ranged from 1 to 20 years. All follow methodological standards when developing PVGs, but the extent of these standards and their public accessibility differs. Aims and target groups of PVGs vary between organizations. Facilitators for developing PVGs are working with a multidisciplinary team, financial resources, consultation processes and a high-quality underlying CPG. Facilitators for disseminating and implementing PVGs are using various strategies. Barriers, on the other hand, are the lack of these factors. All participants mentioned patient involvement as a key aspect in PVG development. CONCLUSION: The steps in the PVG development process are largely similar across the countries. Focus is placed on the involvement of patients in the development process, although the extent of participation varies. The experts collectively attribute great importance to PVGs overall, but in order to constantly adapt to medical progress and changing conditions, the focus in the future may be more on formats like living guidelines. Although there are different views on the mandatory development of PVGs, there is a consistent call for more transparency regarding the methodology used for PVGs.


Assuntos
Participação do Paciente , Guias de Prática Clínica como Assunto , Pesquisa Qualitativa , Feminino , Humanos , Masculino
4.
BMJ Open ; 13(11): e075103, 2023 11 08.
Artigo em Inglês | MEDLINE | ID: mdl-37940153

RESUMO

OBJECTIVES: Provide insights into the experiences and perspectives of healthcare staff who treated scabies or managed outbreaks in formal and informal refugee/migrant camps in Europe 2014-2017. DESIGN: Retrospective qualitative study using semistructured telephone interviews and framework analysis. Recruitment was done primarily through online networks of healthcare staff involved in medical care in refugee/migrant settings. SETTING: Formal and informal refugee/migrant camps in Europe 2014-2017. PARTICIPANTS: Twelve participants (four doctors, four nurses, three allied health workers, one medical student) who had worked in camps (six in informal camps, nine in formal ones) across 15 locations within seven European countries (Greece, Serbia, Macedonia, Turkey, France, the Netherlands, Belgium). RESULTS: Participants reported that in camps they had worked, scabies diagnosis was primarily clinical (without dermatoscopy), and treatment and outbreak management varied highly. Seven stated scabicides were provided, while five reported that only symptomatic management was offered. They described camps as difficult places to work, with poor living standards for residents. Key perceived barriers to scabies control were (1) lack of water, sanitation and hygiene, specifically: absent/limited showers (difficult to wash off topical scabicides), and inability to wash clothes and bedding (may have increased transmission/reinfestation); (2) social factors: language, stigma, treatment non-compliance and mobility (interfering with contact tracing and follow-up treatments); (3) healthcare factors: scabicide shortages and diversity, lack of examination privacy and staff inexperience; (4) organisational factors: overcrowding, ineffective interorganisational coordination, and lack of support and maltreatment by state authorities (eg, not providing basic facilities, obstruction of self-care by camp residents and non-governmental organisation (NGO) aid). CONCLUSIONS: We recommend development of accessible scabies guidelines for camps, use of consensus diagnostic criteria and oral ivermectin mass treatments. In addition, as much of the work described was by small, volunteer-staffed NGOs, we in the wider healthcare community should reflect how to better support such initiatives and those they serve.


Assuntos
Refugiados , Escabiose , Migrantes , Humanos , Escabiose/diagnóstico , Escabiose/epidemiologia , Escabiose/terapia , Estudos Retrospectivos , Atenção à Saúde , Surtos de Doenças/prevenção & controle , Pesquisa Qualitativa , Sérvia
6.
J Clin Epidemiol ; 161: 53-64, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37482111

RESUMO

OBJECTIVES: We aimed to gain an overview of the methods and approaches used to develop, disseminate, and implement patient versions of clinical practice guidelines (PVGs). METHODS: We searched PubMed and MEDLINE through Ovid for articles reporting on the development, dissemination, or implementation of PVGs until March 2022. We searched the homepages of guideline organizations, screened the reference lists of the included documents, and asked experts to complement the publications. We narratively synthesized the findings. RESULTS: Of 3,941 publications screened, 27 were included in the study. The identified method reports focused on patient involvement and peer-review processes. The other included publications highlighted the relevance of broad dissemination strategies and emphasized the importance of patient involvement and improving the readability of PVGs by using lay terms and shorter sentences. CONCLUSION: The terminology used for PVGs varies widely. The extent to which the methods were described was heterogeneous. Organizations developing PVGs should make their methods publicly available and use uniform labeling for PVGs in English to improve their use and recognition, not only for other PVG producers but also for patients and the public. A consensus regarding a minimum reporting standard for developing PVGs internationally and developing guiding principles is desirable.


Assuntos
Guias de Prática Clínica como Assunto , Humanos , Participação do Paciente
8.
BMJ Open ; 12(3): e059040, 2022 03 16.
Artigo em Inglês | MEDLINE | ID: mdl-35296489

RESUMO

INTRODUCTION: The German Guideline Program in Oncology (GGPO) has published patient versions of clinical practice guidelines for more than 10 years. However, a systematic evaluation of these is lacking. The project aims to investigate the role and applicability of patient versions by considering the perspectives of experts, patients and healthcare providers to derive recommendations for the development, dissemination and implementation of patient versions in Germany. METHODS AND ANALYSIS: The project comprises two main modules. In module 1, we will first obtain information on methods and approaches for the development, dissemination and implementation of patient versions by conducting systematic searches in Medline and screening the websites of guideline organisations. We will include any articles, such as methodological or empirical reports, published in German or English since 2000, that address methodological aspects related to patient versions. Further, we will conduct 20 interviews with experts from international and German organisations who are involved in the development of patient versions. In module 2, we will first conduct interviews to explore patients and healthcare providers' perceptions of patient versions of the GGPO. For the group of patients and the group of healthcare providers, we aim to conduct 25 interviews each. Second, we will conduct focus groups, separately for breast, prostate and colon cancer. The recruitment of participants for the interviews and focus groups will primarily be done through a previous survey about patient versions in oncology. The results will be used to derive recommendations for enhancing the development, dissemination and implementation of patient versions by involving the relevant stakeholder groups. ETHICS AND DISSEMINATION: Ethical approval for the qualitative parts of the project was given by the Ethics Committee of Witten/Herdecke University (number 160/2021). Participants will be required to provide informed consent. The project findings will be published in peer-reviewed journals and presented at scientific conferences.


Assuntos
Oncologia , Alemanha , Guias como Assunto , Humanos , Masculino , Educação de Pacientes como Assunto , Revisões Sistemáticas como Assunto
9.
Z Evid Fortbild Qual Gesundhwes ; 168: 106-112, 2022 Feb.
Artigo em Alemão | MEDLINE | ID: mdl-35078748

RESUMO

INTRODUCTION: The development process for clinical guidelines is influenced by factors that are relevant to the validity of a guideline but often are not captured sufficiently in the final guideline documents. PANELVIEW is an English-language tool that can be used to explore the guideline development process from the perspective of guideline group members. Our aim was to translate the PANELVIEW tool into German, taking into account national contexts and linguistic differences. METHODS: The PANELVIEW tool was initially translated by a core team, then refined and approved by a group of experts in a consensus-based Delphi process. The experts were selected on the basis of their experience in guideline development covering different fields (clinical, methodological, organisational, health professional, patient perspective) and geographical regions (Germany, Austria, Switzerland). A representative of the original PANELVIEW team was also involved. The Delphi steps included an online survey, an online consensus conference and final approval by circulating the results via email. Individual items were seen as generally agreed upon if the level of agreement in the respective steps was 75 % or more. RESULTS: The expert group consisted of 12 persons. Of these, 11 (92 %) participated in the online survey and 10 (83 %) in the subsequent consensus conference. After the first Delphi step, sufficient agreement was achieved for 19 of 34 items (56 %). The remaining 15 items were discussed in the consensus conference and finally obtained 100 % agreement. The discussion focused on clarifying and adapting terms whose meaning was ambiguous or inadequate in the German context, which led to a deviation from the original wording in some instances. DISCUSSION: The PANELVIEW tool was translated into German by means of a Delphi process. PANELVIEW complements existing instruments for assessing the methodological quality of guidelines by capturing the perspective of the guideline group. This will enable guideline developers and organisations to identify problems in the drafting process and avoid them in future projects. User testing and validation of the German-language PANELVIEW tool are planned for the future. CONCLUSION: The German-language translation of PANELVIEW will enable guideline developers in German-speaking countries to continuously evaluate and, where necessary, improve the process and methods of guideline development.


Assuntos
Idioma , Tradução , Consenso , Alemanha , Humanos , Inquéritos e Questionários
10.
J Clin Epidemiol ; 144: 8-15, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34923026

RESUMO

OBJECTIVE: Collaboration between groups can facilitate the development of high-quality guidelines. While collaboration is often desirable, misunderstandings can occur. One method to minimize misunderstandings is the pre-specification of terms of engagement in a memorandum of understanding (MOU). This study considered when an MOU may be most helpful, and which key elements should be included. STUDY DESIGN AND SETTING: An international panel of representatives from guideline groups was convened. A literature review to identify publications and other documents relevant to the establishment of MOUs between two or more guideline groups, supplemented by available source documents, was used to inform development of a draft MOU resource. This was iteratively refined until consensus was achieved. RESULTS: The level of detail in an MOU may vary based on institutional preferences and the particular collaboration. Elements within an MOU include those pertaining to: (1) scope and purpose; (2) leadership and team; (3) methods and commitment; (4) review and endorsement; and (5) publication and dissemination. CONCLUSION: Since groups may have different expectations regarding how a collaboration will unfold, an MOU may mitigate preventable misunderstandings. The result may be a higher likelihood of producing a guideline without disruption and delay.

11.
F1000Res ; 11: 1290, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-38239264

RESUMO

Background: With the rising prevalence of allergic diseases in children, prevention of childhood allergies becomes an important public health issue. Recently, a paradigm shift is taking place in the approach to preventing allergies, and clinical practice guidelines (CPG) and food-based dietary guidelines (FBDG) play an important role in providing practitioners with the latest evidence and reliable guidance. However, concern about the methodological quality of the development of FBDGs and CPGs, including limitations in the systematic reviews, lack of transparency and unmanaged conflicts of interest (COI), reduce the trust in these guidelines. Methods: We aim to synthesize the available guidance on early childhood allergy prevention (ECAP) through a systematic search for national and international CPGs and FBDGs concerning ECAP and child nutrition (CN) and to assess the quality of the guidelines and management of COI. Additionally, we will analyse the content and the evidence base of the recommendation statements. We aim to quantify the COI in guideline panellists and explore possible associations between COI and recommendations. Through a social network analysis, we expect to elucidate ties between panellists, researchers, institutions, industry and other sponsors. Guidelines are an important tool to inform healthcare practitioners with the newest evidence, but quality and reliability have to be high. This study will help identify potential for further improvement in the development of guidelines and the management of COI. If the social network analysis proves feasible and reveals more information on COI in comparison to disclosed COI from the previous analyses, the methodology can be developed further to identify undisclosed COIs in panelists. Ethics and dissemination: This research does not require ethical approval because no human subjects are involved. Results will be published in international peer-reviewed open access journals and via presentations at scientific conferences.


Assuntos
Conflito de Interesses , Hipersensibilidade , Guias de Prática Clínica como Assunto , Criança , Pré-Escolar , Humanos , Alimentos , Hipersensibilidade/prevenção & controle , Saúde Pública , Reprodutibilidade dos Testes
12.
J Clin Epidemiol ; 129: 40-50, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-32987160

RESUMO

OBJECTIVE: We aimed to generate evidence on patients' values and preferences to inform the development of the German national Evidence-based Anal Cancer Guideline. STUDY DESIGN AND SETTING: We developed a list of health outcomes based on a systematic search. We then asked anal cancer patients and experts of the guideline development group in an online survey to (a) rate the relative importance of the outcomes in different clinical situations using a nine-point, three-category scale, and (b) select seven outcomes they considered most important for decision-making in each situation. RESULTS: Participants rated almost half of the outcomes (45%) as critical for decision-making, and more than half (53%) as important. Only two outcomes (2%) were rated as low in importance. Agreement between expert and patient ratings was low to fair, and we found important discrepancies in how the relative importance of the outcomes was perceived. However, the rankings of outcomes were highly correlated. CONCLUSION: Determining the relative importance placed by anal cancer patients on outcomes provided useful information for developing guideline recommendations. Our approach may be useful for guideline developers who aim to include the patient perspective. Moreover, our findings may help health professionals caring for anal cancer patients in joint decision-making.


Assuntos
Neoplasias do Ânus , Atitude do Pessoal de Saúde , Avaliação de Resultados em Cuidados de Saúde , Administração dos Cuidados ao Paciente , Preferência do Paciente , Guias de Prática Clínica como Assunto/normas , Neoplasias do Ânus/epidemiologia , Neoplasias do Ânus/psicologia , Neoplasias do Ânus/terapia , Correlação de Dados , Estudos Transversais , Tomada de Decisões , Tomada de Decisão Compartilhada , Prática Clínica Baseada em Evidências , Alemanha/epidemiologia , Humanos , Avaliação de Resultados em Cuidados de Saúde/métodos , Avaliação de Resultados em Cuidados de Saúde/normas , Administração dos Cuidados ao Paciente/métodos , Administração dos Cuidados ao Paciente/normas , Percepção Social
13.
BMC Health Serv Res ; 20(1): 458, 2020 May 24.
Artigo em Inglês | MEDLINE | ID: mdl-32448198

RESUMO

BACKGROUND: Guidelines based on patient preferences differ from those developed solely by clinicians and may promote patient adherence to guideline recommendations. There is scant evidence on how to develop patient-informed guidelines. This study aimed to describe how guideline developers identify, incorporate and report patient preferences. METHODS: We employed a descriptive cross-sectional survey design. Eligible organizations were non-profit agencies who developed at least one guideline in the past five years and had considered patient preferences in guideline development. We identified developers through the Guidelines International Network and publicly-available guideline repositories, administered the survey online, and used summary statistics to report results. RESULTS: The response rate was 18.3% (52/284). Respondents included professional societies, and government, academic, charitable and healthcare delivery organizations from 18 countries with at least 1 to ≥6 years of experience generating patient-informed guidelines. Organizations most frequently identified preferences through patient panelists (86.5%) and published research (84.6%). Most organizations (48, 92.3%) used multiple approaches to identify preferences (median 3, range 1 to 5). Most often, organizations used preferences to generate recommendations (82.7%) or establish guideline questions (73.1%). Few organizations explicitly reported preferences; instead, they implicitly embedded preferences in guideline recommendations (82.7%), questions (73.1%), or point-of-care communication tools (61.5%). Most developers had little capacity to generate patient-informed guidelines. Few offered training to patients (30.8%), or had dedicated funding (28.9%), managers (9.6%) or staff (9.6%). Respondents identified numerous barriers to identifying preferences. They also identified processes, resources and clinician- and patient-strategies that can facilitate the development of patient-informed guidelines. In contrast to identifying preferences, developers noted few approaches for, or barriers or facilitators of incorporating or reporting preferences. CONCLUSIONS: Developers emphasized the need for knowledge on how to identify, incorporate and report patient preferences in guidelines. In particular, how to use patient preferences to formulate recommendations, and transparently report patient preferences and the influence of preferences on guidelines is unknown. Still, insights from responding developers may help others who may be struggling to generate guidelines informed by patient preferences.


Assuntos
Cooperação do Paciente , Preferência do Paciente , Guias de Prática Clínica como Assunto/normas , Estudos Transversais , Humanos , Inquéritos e Questionários
14.
Z Evid Fortbild Qual Gesundhwes ; 135-136: 50-55, 2018 09.
Artigo em Alemão | MEDLINE | ID: mdl-30097386

RESUMO

BACKGROUND: As early as 1997, the German Guideline for Guidelines laid down patient participation in guideline development as the cornerstone of good, trustworthy medical guidelines. The German Guideline Assessment Tool (DELBI) published in 2005 requires patients or relatives to be involved in the development of medical guidelines. Ideally, this should be effected through membership in the author group. The Association of the Scientific Medical Societies in Germany (AWMF) recommends this approach for the so-called S3 guidelines (systematically developed guidelines) and S2k guidelines (consensus-based guidelines). The present study addresses the question of whether and to what extent German guideline publishers adhere to these principles of patient orientation. METHODS: For this purpose, a descriptive analysis of the guidelines valid at the beginning of November 2017 was carried out. All guidelines (n=520) of the AWMF member societies were assessed. We evaluated S3- and S2k guidelines only, as these are of particular importance for patient involvement due to the requirement of an interdisciplinary guideline group. Data were reported on the involvement of patients (as co-authors of medical guidelines) and on the existence of guidance documents addressing patients and the public (so-called patient information and patient guidelines). RESULTS: Regarding the 105 (165) S3 (S2k) guidelines, we found evidence on patient involvement in guideline development in 99 (134) cases (94 % of S3 / 81 % of S2k guidelines). In 61 (87) guidelines, authors had contributed to the authors group (58 % / 53 %) and 59 (80) guidelines with voting rights (56 % / 48 %). For 50 (15) S3 (S2k) guidelines (48 % / 9 %), the guideline report provided information on the existence or planned development of guidance documents for patients and the public (patient guidelines or patient information). Guidance-related patient information was available on the internet for only 37 (2) S3 (S2k) guidelines (35 % / 2 %). CONCLUSION: A substantial gap remains between patient / public involvement standards for guideline development and practice in Germany, even 12 years after the publication of national guideline standards. This is a missed opportunity since guidelines without adequate participation of those affected by the recommendations have a problem of legitimacy and transparency. Only guidelines where patients were involved in all voting processes during development build and strengthen trust between patients and the medical profession. And only those who present the rationale for medical recommendations in a generally understandable and comprehensible manner let affected individuals make individual decisions.


Assuntos
Participação do Paciente , Guias de Prática Clínica como Assunto , Alemanha , Humanos , Sociedades Médicas
15.
Pharmacopsychiatry ; 50(3): 96-104, 2017 May.
Artigo em Inglês | MEDLINE | ID: mdl-28445899

RESUMO

The increasing abuse of the street drug crystal meth (methamphetamine) in many countries worldwide has resulted in a growing demand to treat patients who have acquired a methamphetamine-related disorder. The results of a systematic literature search which led to the consensus-based recommendations by the Working Group of the German Agency for Quality in Medicine (Ärztliches Zentrum für Qualität in der Medizin - ÄZQ) are presented. Pharmacological treatments were reviewed in 58 out of the 103 publications included. They were mainly randomized controlled trials (RCT). Despite increased research activities, none of the medications studied demonstrated a convincing and consistent effect on abstinence rates, despite some having an impact on craving and retention rates or symptom control. In addition, as yet there is no sufficient evidence available for dopamine analogue treatment ("substitution") after the initial withdrawal-period. Methamphetamine-related, post-acute persistent or comorbid syndromes such as methamphetamine-associated psychosis (MAP), depressive syndromes, anxiety, and sleep disorders are usually treated in a symptom-oriented manner. Risks of interactions with methamphetamine have to be taken in account when prescribing medications with doubtful efficacy. Further research is warranted.


Assuntos
Transtornos Relacionados ao Uso de Anfetaminas/tratamento farmacológico , Medicina Baseada em Evidências , Transtornos Mentais/tratamento farmacológico , Metanfetamina/efeitos adversos , Guias de Prática Clínica como Assunto , Psicoses Induzidas por Substâncias/tratamento farmacológico , Prevenção Secundária/métodos , Transtornos Relacionados ao Uso de Anfetaminas/epidemiologia , Antipsicóticos/uso terapêutico , Benzodiazepinas/uso terapêutico , Comorbidade , Humanos , Transtornos Mentais/epidemiologia , Recidiva
17.
Artigo em Alemão | MEDLINE | ID: mdl-28289777

RESUMO

Information for patients with rare diseases has to adhere to strict quality criteria in order to support individual treatment decisions or coping strategies. However, developers are facing specific challenges: For example, the evidence is often insufficient or of very low quality. In the context of the National Action League for People with Rare Diseases (NAMSE), criteria have been developed that assure high-quality information on rare diseases. Core criteria comprise the involvement of patients or their advocates in all stages of the development process, the systematic search and assessment of the evidence, systematic collection of patient experience, transparency in terms of people involved and funding, and nondirective and neutral formulation of content and documentation of the process. In a joint project between the Alliance for Chronic Rare Diseases (ACHSE e. V.) and the German Agency for Quality in Medicine (ÄZQ), ten short information leaflets on different rare diseases have been developed in the past three years, conceived to show the applicability of these criteria. First experiences with this format show that the criteria are adaptive to a broad range of diverse rare diseases and settings. Involving patients and their advocates throughout the whole development process - from prioritization to development of methods and provision of patient experience and coping strategies - is crucial. Insufficient evidence remains a challenge. The examples show that in the absence of proven findings, information that matters to patients and reflects this uncertainty is feasible.


Assuntos
Programas Governamentais/normas , Gestão da Informação em Saúde/normas , Disseminação de Informação/métodos , Portais do Paciente/normas , Garantia da Qualidade dos Cuidados de Saúde/normas , Doenças Raras/diagnóstico , Doenças Raras/terapia , Informação de Saúde ao Consumidor/normas , Alemanha , Humanos
19.
Z Evid Fortbild Qual Gesundhwes ; 109(6): 445-51, 2015.
Artigo em Alemão | MEDLINE | ID: mdl-26474649

RESUMO

For several years patient versions of guidelines have become mandatory in the German Guidelines Program in Oncology (GGPO). Based on the methodology that has been developed for the German National Disease Management Guidelines Program, patient versions of guidelines translate the recommendations of clinical practice guideline into plain language and provide information about the harms and benefits of the interventions being addressed in the guideline. They are developed by a group of guideline authors (experts as well as patients), they are consensus-based and aim to create transparency in recommendations for physicians and their rationales. An automated analysis of readability shows that patient versions of guidelines are specific to the target group of educated lay people. Moreover, the responses to a reader feedback questionnaire indicate that comprehensibility, level of detail and depth of information are considered highly relevant and positive by users. Thus, patient versions of guidelines meet the needs of a specific target group. Nevertheless, the development of other formats for readers with low levels of health literacy or cognitive competencies is desirable. Currently it remains unclear if these simplified formats are able to reflect the complexity of high quality clinical practice guidelines.


Assuntos
Oncologia/organização & administração , Programas Nacionais de Saúde/organização & administração , Educação de Pacientes como Assunto/organização & administração , Guias de Prática Clínica como Assunto , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/patologia , Neoplasias da Mama/terapia , Compreensão , Feminino , Alemanha , Letramento em Saúde , Humanos , Masculino , Metástase Neoplásica , Objetivos Organizacionais , Folhetos , Neoplasias da Próstata/diagnóstico , Neoplasias da Próstata/patologia , Neoplasias da Próstata/terapia , Garantia da Qualidade dos Cuidados de Saúde/organização & administração , Inquéritos e Questionários
20.
Z Evid Fortbild Qual Gesundhwes ; 109(2): 153-8, 2015.
Artigo em Alemão | MEDLINE | ID: mdl-26028453

RESUMO

Since 2010, the German Agency for Quality in Medicine has developed so-called short information leaflets for patients that are specifically designed for use in doctor-patient encounters. Physicians, patient representatives and communication specialists were involved in the development of this format. Their implementation aims at enhancing awareness and dissemination of these leaflets amongst the members of the self-governing bodies and other multipliers (like medical specialty societies, patient organisations, other bodies and institutions of the healthcare system). This paper describes the first implementation experiences on the basis of internally collected data on the involvement of multipliers, availability and assessment of their relevance. A first analysis shows that the short information leaflets are broadly available amongst the self-governing bodies and that they are considered to be of high relevance. Due to the direct involvement of the members of specialty societies and patient organisations and other experts, short information leaflets are also gaining acceptance outside the self-governing system. This is emphasised by the rising number of requests to reprint or cite or use the leaflets. Consistency with evidence-based treatment recommendations promotes acceptance of these leaflets among physicians.


Assuntos
Implementação de Plano de Saúde/organização & administração , Programas Nacionais de Saúde , Folhetos , Educação de Pacientes como Assunto/organização & administração , Relações Médico-Paciente , Melhoria de Qualidade/organização & administração , Alemanha , Humanos
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