RESUMEN
BACKGROUND: As the first point of contact for patients with health issues, general practitioners (GPs) are frequently confronted with patients presenting with non-specific symptoms of unclear origin. This can result in delayed, prolonged or false diagnoses. To accelerate and improve the diagnosis of diseases, clinical decision support systems would appear to be an appropriate tool. The objective of the project 'Smart physician portal for patients with unclear disease' (SATURN) is to employ a user-centered design process based on the requirements analysis presented in this paper to develop an artificial Intelligence (AI)-based diagnosis support system that specifically addresses the needs of German GPs. METHODS: Requirements analysis for a GP-specific diagnosis support system was conducted in an iterative process with five GPs. First, interviews were conducted to analyze current workflows and the use of digital applications in cases of diagnostic uncertainty (as-is situation). Second, we focused on collecting and prioritizing tasks to be performed by an ideal smart physician portal (to-be situation) in a workshop. We then developed a task model with corresponding user requirements. RESULTS: Numerous GP-specific user requirements were identified concerning the tasks and subtasks: performing data entry (open system, enter patient data), reviewing results (receiving and evaluating results), discussing results (with patients and colleagues), scheduling further diagnostic procedures, referring to specialists (select, contact, make appointments), and case closure. Suggested features particularly concerned the process of screening and assessing results: e.g., the system should focus more on atypical patterns of common diseases than on rare diseases only, display probabilities of differential diagnoses, ensure sources and results are transparent, and mark diagnoses that have already been ruled out. Moreover, establishing a means of using the platform to communicate with colleagues and transferring patient data directly from electronic patient records to the system was strongly recommended. CONCLUSIONS: Essential user requirements to be considered in the development and design of a diagnosis system for primary care could be derived from the analysis. They form the basis for mockup-development and system engineering.
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Sistemas de Apoyo a Decisiones Clínicas , Médicos Generales , Humanos , Inteligencia Artificial , Diseño Centrado en el Usuario , Registros Electrónicos de SaludRESUMEN
BACKGROUND: Such patient-reported outcome measures (PROMs) and patient-centered outcome measures as the Integrated Palliative Care Outcome Scale (IPOS), Phase of Illness, and IPOS Views on Care (IPOS VoC), facilitate patient-centered care and help improve quality. To ensure sustainability, implementation and usage should be adapted according to setting. When settings involve several distinct teams that differ in terms of views and working practices, it is more difficult to integrate outcome measures into daily care. The ELSAH study aimed to learn how health professionals working in specialized outpatient palliative care (SOPC) viewed the use of these outcome measures in daily care, and what they express is needed for successful sustainable, state-wide application. METHODS: We used a parallel mixed-methods design involving three focus groups (n = 14) and an online-survey based on normalization process theory (n = 76). Most participants were nurses and physicians from 19 SOPC-teams in Hesse, Germany. We used a triangulation protocol including convergence coding matrices to triangulate findings. RESULTS: The majority of health professionals were able to integrate the outcome measures into their working lives and said that it had become a normal part of their day-to-day work. To ensure their sustainable integration into daily care, the motivation and concerns of health professionals should be taken into consideration. Health professionals must clearly recognize how the measures help improve daily care and quality evaluation. CONCLUSIONS: To implement the outcome measures in a number of teams, it will be necessary to take individual team characteristics into account, because they influence motivation and concerncs. Further, it will be necessary to offer opportunities for them to engage in peer support and share information with other teams. The sustainable use of outcome measures in SOPC will require continuous support within each team as well as across teams. When several distinct teams are working in the same setting, a cross-team coordination unit can help to coordinate their work efficiently. TRIAL REGISTRATION: German Clinical Trials Register DRKS-ID: DRKS00012421; www.germanctr.de/DRKS00012421.
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Enfermería de Cuidados Paliativos al Final de la Vida , Pacientes Ambulatorios , Humanos , Cuidados Paliativos , Atención Ambulatoria , Medición de Resultados Informados por el PacienteRESUMEN
BACKGROUND: The use of patient-reported outcome measures (PROM) and caregiver-reported outcome measures can raise the patient centeredness of treatment and improve the quality of palliative care. Nevertheless, the everyday implementation of self-report in patients and caregivers is complex, and should be adapted for use in specific settings. We aimed to implement a set of outcome measures that included patient and caregiver self- and proxy-reported outcome measures in specialised outpatient palliative care (SOPC). In this study, we explore how the Integrated Palliative Outcome Scale (IPOS), IPOS Views on Care (IPOS VoC) and the Short-form Zarit Caregiver Burden Interview (ZBI-7) can be feasibly, acceptably and appropriately implemented in the daily care routines of SOPC. METHODS: Five SOPC teams were trained, and used the outcome measures in daily practice. Team members were mainly nurses and physicians. To investigate their feedback, we used a multi-method qualitative design consisting of focus groups with SOPC-team members (n = 14), field notes of meetings and conversations with the SOPC teams. In an iterative process, we analysed the findings using qualitative content analysis and refined use of the outcome measures. RESULTS: We found that integrating patient and caregiver outcome measures into daily care routines in SOPC is feasible. To improve feasibility, acceptability and appropriateness, the resulting burden on patients and relatives should be kept to a minimum, the usefulness of the measures must be understood, they should be used considerately, and administration must be manageable. We removed ZBI-7 from the set of measures as a result of feedback on its content and wording. CONCLUSIONS: SOPC-team members have reservations about the implementation of PROM in SOPC, but with appropriate adjustments, its application in daily care is feasible, accepted and perceived as appropriate. Previous to use, SOPC-team members should be trained in how to apply the measures, in the design of manageable processes that include integration into electronic documentation systems, and in ongoing evaluation and support. They should also be taught how useful the measures can be. TRIAL REGISTRATION: May 19th, 2017, German Clinical Trials Register DRKS-ID: DRKS00012421 .
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Cuidadores , Cuidados Paliativos , Estudios de Factibilidad , Humanos , Evaluación de Resultado en la Atención de Salud , Pacientes Ambulatorios , Cuidados Paliativos/métodos , Medición de Resultados Informados por el PacienteRESUMEN
BACKGROUND AND AIM: Children and adolescents with life-limiting conditions and complex symptoms are eligible for specialized outpatient palliative care (SOPC). The SOPC guideline in Germany solely states: "The special needs of children and adolescents shall be considered." This study aims to identify these special needs and to develop recommendations for a revision of the SOPC guideline. METHODS: We used a sequential mixed-methods design including surveys, qualitative interviews, participant observations, and focus group discussions with relatives, patients, and team members of the SOPC in Hesse, Germany. Furthermore, we analyzed documentation data of the Hessian SOPC teams. RESULTS: Children and adolescents in SOPC suffer from complex and often rare diseases. They need elaborate palliative care delivered by a team with pediatric expertise. SOPC must include the whole family and coordinate healthcare providers that are stretched regionally. Furthermore, patients and relatives need elaborate psychosocial care. SOPC for children and adolescents is less well-known than SOPC for adults, and access for families is often difficult. There is a healthcare gap for children and adolescents with life-limiting diseases who need palliative care at home but not of the intensive kind provided by SOPC. CONCLUSIONS: SOPC for children, adolescents, and adults who have been diseased since their childhood and adolescence must be delivered within an independent structure, including a reimbursement scheme that takes the special care efforts for this patient group into consideration.
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Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Adolescente , Adulto , Atención Ambulatoria , Niño , Alemania , Humanos , Pacientes Ambulatorios , Cuidados Paliativos/psicologíaRESUMEN
BACKGROUND: Specialised palliative home-care supports patients with life-limiting diseases in their familiar surroundings. The number of palliative care teams and patients being cared for is increasing worldwide. To assess and improve quality, it is needed to understand, how specialised palliative home-care can be provided successfully. For this purpose we examined the views of all involved stakeholders. AIM: To identify the issues that patients, their relatives and involved health professionals view as important in ensuring the success of specialised palliative home-care. DESIGN: We used a qualitative design based on participant observations, interviews and focus groups following the principles of a Grounded Theory approach. SETTING/PARTICIPANTS: All specialised palliative home-care teams (n = 22) caring for adults in Hesse, Germany, participated. We conducted participant observations (n = 5), and interviewed patients (n = 14), relatives (n = 14) and health professionals working in or collaborating with specialised palliative home-care (n = 30). We also conducted focus groups (n = 4) with health professionals including a member check. RESULTS: Successful specialised palliative home-care needs to treat complex symptoms, and provide comprehensive care including organisation of care, involving relatives and addressing issues of death and dying. Sense of security for patients and relatives is key to enable care at home. Care delivery preferences include a focus on the quality of relationships, respect for individuality and the facilitation of self-determination. CONCLUSIONS: Consideration of the identified key issues can help to ensure successful specialised palliative home-care. Knowledge of these should also be considered when researching and assessing quality of care. TRIAL REGISTRATION: German Clinical Trials Register DRKS-ID: DRKS00012421; http://www.germanctr.de.
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Servicios de Atención de Salud a Domicilio , Enfermería de Cuidados Paliativos al Final de la Vida , Adulto , Personal de Salud , Humanos , Cuidados Paliativos , Investigación CualitativaRESUMEN
A clinical decision support system based on different methods of artificial intelligence (AI) can support the diagnosis of patients with unclear diseases by providing tentative diagnoses as well as proposals for further steps. In a user-centred-design process, we aim to find out how general practitioners envision the user interface of an AI-based clinical decision support system for primary care. A first user-interface prototype was developed using the task model based on user requirements from preliminary work. Five general practitioners evaluated the prototype in two workshops. The discussion of the prototype resulted in categorized suggestions with key messages for further development of the AI-based clinical decision support system, such as the integration of intelligent parameter requests. The early inclusion of different user feedback facilitated the implementation of a user interface for a user-friendly decision support system.
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Sistemas de Apoyo a Decisiones Clínicas , Médicos Generales , Humanos , Inteligencia Artificial , Inteligencia , Atención Primaria de SaludRESUMEN
BACKGROUND: The topic of patient safety has been a subject of much discussion since the end of the last millennium. Ensuring patient safety is a central challenge in health care. An important tool to raise awareness for and learn from adverse events and thus promote patient safety are error-reporting and learning systems (Critical Incident Reporting Systemâ¯=â¯CIRS). METHODS: More than 17 years after its establishment, the CIRS "jeder-fehler-zaehlt.de" (JFZ) for German primary care has undergone a revision in terms of content and technology. The revised web-based system can be used for reporting as well as for classifying and analyzing incident reports. During this process, a descriptive analysis of the current report inventory was carried out, with a focus on serious medication errors. This included all 781 valid incident reports received between September 2004 and December 2021. RESULTS: In 576 of the 781 reports (73.8%), the GP practice was directly involved in the critical incident. Among error types, process errors predominated (79.8% of the classifications, 99.1% of the reports) compared with knowledge and skills errors (20.2% of the classifications, 39.7% of the reports). Communication errors (63.0%) were the most common contributing factor to critical incidents, followed by flaws in tasks and measures (39.7%). Serious and permanent patient harm was rarely reported (8.3% of the reports), whereas temporary patient harm was more common (40.3% of the reports). Incident reports about medication errors with at least serious patient harm included, in particular, substances that affected blood clotting, corticosteroids, and opiates. DISCUSSION: Our results complement the rates that are reported internationally for error types, patient harm, and contributing factors. Serious but preventable adverse events, so-called never events, are frequently associated with the medication process in both JFZ reports and the literature. CONCLUSION: Critical incident reporting systems cannot provide accurate information about the frequency of errors in health care, but they can offer important insights into, for example, serious medication errors. Therefore, they offer both employees and healthcare institutions an opportunity for individual and institutional learning.
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Seguridad del Paciente , Gestión de Riesgos , Humanos , Alemania , Gestión de Riesgos/métodos , Errores Médicos , Atención Primaria de SaludRESUMEN
BACKGROUND: To improve patient safety, it is important that healthcare facilities learn from critical incidents. Tools such as reporting and learning systems and team meetings structure error management and promote learning from incidents. To enhance error management in ambulatory care practices, it is important to promote a climate of safety and ensure personnel share views on safety policies and procedures. In contrast to the hospital sector, little research has been dedicated to developing feasible approaches to supporting error management and safety climate in ambulatory care. In this study, we developed, implemented, and evaluated a multicomponent intervention to address how error management and safety climate can be improved in ambulatory care practices. METHODS: In a prospective 1-group pretest-posttest implementation study, we sought to encourage teams in German ambulatory practices to use proven methods such as guidelines, workshops, e-learning, (online) meetings, and e-mail newsletters. A pretest-posttest questionnaire was used to evaluate level and strength of safety climate and psychological behavioral determinants for systematic error management. Using 3 short surveys, we also assessed the state of error management in the participating practices. In semistructured interviews, we asked participants for their views on our intervention measures. RESULTS: Overall, 184 ambulatory care practices nationwide agreed to participate. Level of safety climate and safety climate strength (rwg) improved significantly. Of psychological behavioral determinants, significant improvements could be seen in "action/coping planning" and "action control." Seventy-six percent of practices implemented a new reporting and learning system or modified their existing system. The exchange of information between practices also increased over time. Interviews showed that the introductory workshop and provided materials such as report forms or instructions for team meetings were regarded as helpful. CONCLUSIONS: A significant improvement in safety climate level and strength, as well as participants' knowledge of how to analyze critical incidents, derive preventive measures and develop concrete plans suggest that it is important to train practice teams, to provide practical tips and tools, and to facilitate the exchange of information between practices. Future randomized and controlled intervention trials should confirm the effectiveness of our multicomponent intervention.Trial registration: Retrospectively registered on 18. November 2019 in German Clinical Trials Register No. DRKS00019053.
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Atención Ambulatoria , Errores Médicos , Cultura Organizacional , Seguridad del Paciente , Administración de la Seguridad , Humanos , Estudios Prospectivos , Errores Médicos/prevención & control , Alemania , Encuestas y Cuestionarios , Femenino , MasculinoRESUMEN
Objective: At the Medical Faculty of the Goethe University Frankfurt am Main, the elective course "climate change and health" was offered to students in the clinical phase of their medical studies for the first time in the winter semester 2021/22 (any unfilled places were made available to interested students studying other subjects). Despite attracting considerable attention, this topic has not yet been incorporated into the curriculum of medical studies. Our aim was therefore to teach students about climate change and discuss its effects on human health. The students evaluated the elective in terms of various factors relating to knowledge, attitudes and behavior. Project description: The elective focused on the concept of Planetary Health, with an emphasis on the health consequences of climate change, as well as possibilities for action and adaptation in clinical and practical settings. The course took place in three live, online sessions (with inputs, discussion, case studies and work in small groups), as well as online preparation and a final written assignment for which students were asked to reflect on the subject. The standardized teaching evaluation questionnaire (=didactic dimension) of Goethe University was used online to evaluate the elective, whereby the questionnaire was extended to include the measurement of changes in students' agreement with items (dimensions) relating to knowledge, attitudes and behavior (personal behavior and behavior as physicians) before and after the course (pre/post comparison). Results: Students expressed high levels of satisfaction with the course content, the presentation of the course, and the organization of the elective. This was reflected in very good to good overall ratings. The pre/post comparisons further showed a significant, positive shift in agreement ratings in almost all dimensions. The majority of respondents also wanted the topic to be firmly embedded in the medical curriculum. Conclusion: The evaluation shows that with respect to the impact of climate change on human health, the elective course had a clear influence on the knowledge, attitudes, and behaviors of the students. In view of the relevance of the topic, it is therefore important that this subject is included in medical curricula in the future.
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Educación de Pregrado en Medicina , Médicos , Estudiantes de Medicina , Humanos , Cambio Climático , Curriculum , Estudiantes , Docentes Médicos , Educación de Pregrado en Medicina/métodosRESUMEN
BACKGROUND: Error management plays a key role in patient safety. It is a systematic approach aimed at identifying and learning from critical incidents by reporting, documenting and analyzing them. Almost nothing is known about the incidents physicians in outpatient care consider to be critical and how they deal with them. We carried out an interview study to explore outpatient physicians' views on error management, discover what they regard as critical incidents, and find out how error management is put into practice in ambulatory care. METHODS: We conducted 72 semi-structured interviews with physicians from ambulatory practices. We asked participants what they considered to be a critical incident, how they reacted following an incident, how they discussed incidents with their coworkers, and whether they used critical incident reporting systems. The interviews were transcribed verbatim and analyzed using qualitative content analysis. RESULTS: Interviewed physicians defined the term "critical incident" differently. Most participants reported that they recorded information on incidents and discussed them in their teams. Several physicians reported taking a 'pay better attention next time-approach' to the analysis of incidents. Systematic error management involving incident documentation, analysis, preventive measure development, and follow-up, was the exception. CONCLUSIONS: To promote error management, medical training should include teaching on the topic, so that medical professionals can learn about critical incidents and how to deal with them in an open and structured manner. This would help establish the culture of safety that has long been called for internationally.
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Médicos , Gestión de Riesgos , Humanos , Seguridad del Paciente , Investigación CualitativaRESUMEN
BACKGROUND: At the onset of the COVID-19 pandemic general practitioners complained about feeling uninformed and lacking a sufficient flow of information from the local health authorities. Secure instant messaging describes a digital, chat-based form of communication enabling ambulatory care providers to connect in real-time and share information across medial sectors. KomPan, a proof-of-concept study, established a secure instant messaging structure in two model regions in Germany to improve communication between general practitioners and local health authorities via an additional communication pathway. This paper presents results of a qualitative user survey. METHODS: We recruited general practitioners (nâ¯=â¯43) and staff of local health authorities (n=10) in two Hessian model regions for using the secure instant messaging (SIM) app of the Famedly GmbH, starting in December 2020 (2nd COVID-19 wave). We asked participants to share their usage experiences after a usage time of multiple months. In guided telephone interviews, we primarily asked how communication between the two user groups had changed while using secure instant messaging. The interviews were transcribed verbatim and analysed using thematic analysis. RESULTS: We conducted ten interviews with general practitioners and two with staff of the participating local health authorities. Using our SIM-based platform promoted professional exchange between general practitioners. In contrast, the app had little impact on communication between local health authorities and general practitioners. Opposing expectations and usage patterns of the two user groups, among other reasons, probably led to a reduced direct trans-sectoral communication via secure instant messaging. CONCLUSION: Establishing local chat groups for general practitioners was welcomed, especially during the pandemic situation, to improve professional exchange while experiencing challenging working conditions. To use secure instant messaging effectively for trans-sectoral communication a more comprehensive approach seems to be needed, such as digitalisation of institutional communication structures and improved networks of local healthcare providers.
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COVID-19 , Aplicaciones Móviles , Médicos de Atención Primaria , COVID-19/prevención & control , Comunicación , Alemania , Humanos , Pandemias/prevención & controlRESUMEN
General practices are rooted in the local community and considered to be particularly well-positioned for engaging in preventive and health-promoting activities. The overall aim of the scoping review is to identify priorities and gaps in research published in the past 20 years on preventive and health-promoting activities provided by general practitioners or their teams in general practices in Germany. MEDLINE and Embase databases were systematically searched in November 2020. Papers were selected in dual-review mode and extracted in single-review mode. Data analysis was finished by May 2021. In total, 530 papers were included in the synthesis. Little research has been carried out into collaboration opportunities both within the general practice team and in communities as a whole, with specialists (18%), hospitals (9%), and health insurance companies (6%) being the most frequent cooperation partners of GPs. 15%-20% of papers each dealt with 'early detection', 'information provision' and 'cardiovascular prevention'. Secondary (53%) and tertiary prevention (43%) was more often the subject of research than primary (39%) and quaternary prevention (15%). Healthy subjects (26%) were less often studied than people with pre-existing conditions (42%) and risk factors (48%). Little information was available on preventive activities in terms of gender, young people, migration background, housing conditions or educational background. Personal counselling (15%) was the most frequently described approach to health promotion in general practices, along with printed information materials (10%). This scoping review provides information on which to base targeted interventions and future research that can contribute towards transforming general practices into promoters of health within the community.
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Medicina General , Médicos Generales , Adolescente , Humanos , Consejo , Alemania , Promoción de la SaludRESUMEN
OBJECTIVE: The aim of the study was to support the development of future critical incident reporting systems (CIRS) in primary care by collecting information on existing systems. Our focus was on processes used to report and analyze incidents, as well as strategies used to overcome difficulties. METHODS: Based on literature from throughout the world, we identified existing CIRS in primary care. We developed a questionnaire and sent it to operators of a purposeful sample of 17 CIRS in primary care. We used cross-case analysis to compare the answers and pinpoint important similarities and differences in the CIRS in our sample. RESULTS: Ten CIRS operators filled out the questionnaire, and 9 systems met our inclusion criteria. The sample of CIRS came from 8 different countries and was rather heterogeneous. The reporting systems invited a broad range of professions to report, with some also including reports by patients. In most cases, reporting was voluntary and conducted via an online reporting form. Reports were analyzed locally, centrally, or both. The various CIRS used interesting ideas to deal with barriers. Some, for example, used confidential reporting modes as a compromise between anonymity and the need for follow-up investigations, whereas others used smartphone applications and call centers to speed up the reporting process. CONCLUSIONS: We found multiple CIRS that have operated in primary care for many years and have received a high number of reports. They were largely developed in accordance with recommendations found in literature. Developers of future systems may find this overview useful.
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Atención Primaria de Salud , Gestión de Riesgos , Humanos , Encuestas y CuestionariosRESUMEN
BACKGROUND: In Germany, people with life-limiting conditions and complex symptoms are eligible for specialized outpatient palliative care (SOPC). Requirements, delivery and goals of SOPC have been laid down by the Federal Joint Committee in a nationwide guideline. The guideline emphasizes the need to consider the special needs of children and adolescents with life-limiting conditions. A specification of these needs has so far been missing. The focus group discussion presented here aimed at investigating similarities and differences between the specialized outpatient palliative care of adults (SOPC for adults) on the one hand, and children and adolescents (SOPPC) on the other hand, from the perspective of health care professionals in order to further define specifics of SOPPC. METHOD: In three focus group discussions a total of 11 nursing and 8 medical professionals from SOPC for adults and SOPPC engaged in face-to-face discussions on the similarities and differences of both care forms. Discussions were designed openly and stimulated with three guiding questions only. Focus group discussions were audio-recorded, transcribed verbatim and analyzed by thematic analysis supported by the software MAXQDA. RESULTS: Within the following six themes, similarities as well as key differences between SOPC and SOPPC were identified: the participants discussed diseases, coverage area and locations, therapy goals, the psychosocial care situation, the role of relatives and end-of-life care. From the participants' perspective different underlying diseases constitute a main difference that causes further differences in the expertise required. Furthermore, SOPC for adults and SOPPC differ in the dimension of areas covered by one team, the number of patients per team and the reasons for SOPC visits. Differences in terminal care and the mourning process within the team became evident. Some similarities existed regarding goal-setting, psychosocial care and the role of relatives, but concrete patterns and the importance of these aspects differed because a particularly complex and emotional communication is required when a child is dying. CONCLUSION: From the perspective of health care professionals, SOPC for adults and SOPPC differ with regard to underlying diseases as well as care patterns such as collaboration with relatives and their need for psychosocial support. Therefore, the care for children, adolescents and young adults with life-limiting conditions and pediatric diseases all over Germany should be delivered within the frame of an independent care structure by teams whose members possess specific pediatric expertise.
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Pacientes Ambulatorios , Cuidados Paliativos , Adolescente , Niño , Grupos Focales , Alemania , Personal de Salud , Humanos , Cuidados Paliativos/psicología , Investigación Cualitativa , Adulto JovenRESUMEN
OBJECTIVE: The aim of this study was to analyze the strength of safety measures described in incident reports in outpatient care. METHODS: An incident reporting project in German outpatient care included 184 medical practices with differing fields of specialization. The practices were invited to submit anonymous incident reports to the project team 3 times for 17 months. Using a 14-item coding scheme based on international recommendations, we deductively coded the incident reports and safety measures. Safety measures were classified as "strong" (likely to be effective and sustainable), "intermediate" (possibly effective and sustainable), or "weak" (less likely to be effective and sustainable). RESULTS: The practices submitted 245 incident reports. In 160 of them, 243 preventive measures were described, or an average of 1.5 per report. The number of documented measures varied from 1 in 67% to 4 in 5% of them. Four preventive measures (2%) were classified as strong, 37 (15%) as intermediate, and 202 (83%) as weak. The most frequently mentioned measures were "new procedure/policy" (n = 121) and "information/notification/warning" (n = 45). CONCLUSIONS: The study provides examples of critical incidents in medical practices and for the first time examines the strength of ensuing measures introduced in outpatient care. Overall, the proportion of weak measures is (too) high, indicating that practices need more support in identifying strong measures.
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Errores Médicos , Seguridad del Paciente , Humanos , Errores Médicos/prevención & control , Gestión de RiesgosRESUMEN
OBJECTIVE: In Germany, children with life-limiting conditions and complex symptoms are eligible for specialised outpatient palliative care (SOPC). In the federal state of Hesse, SOPC for children (SOPPC) is delivered by teams with paediatric expertise. While burdened by the life-limiting condition of their child, parents must also fulfill their roles as main care providers and decision makers. Collaboration between parents and SOPPC teams is important, as the intermittent care and uncertainty it entails often lasts for several months or years. We explored parents' experiences and their demands of collaboration with SOPPC teams. METHODS: We conducted nine narrative interviews with 13 parents of children and adolescents with life-limiting conditions and used a grounded theory approach to analyse interview data. RESULTS: Parents stressed the importance of paediatric expertise, honesty, psychosocial support, an individualised approach, experience of self-efficacy and the need to be recognised as experts for their children. The narrative interviews showed that collaboration between parents and SOPPC teams was characterised by parents' need for specialised professional assistance and their simultaneous empowerment by SOPPC teams. CONCLUSIONS: Parents' perceptions of what good collaboration with SOPPC teams entails are manifold. To meet these complex needs, SOPPC requires time and specialised expertise.