Copenhagen Diabetes Consensus (CODIAC) 2021: User involvement in diabetes care, prevention and research.

AIMS: User involvement is pivotal for health development, but there are significant gaps in our understanding of the concept. The Copenhagen Diabetes Consensus on User Involvement in Diabetes Care, Prevention and Research (CODIAC) was established to address these gaps, share knowledge and develop best practices. METHODS: A literature review of user involvement was undertaken in diabetes care, prevention and research. Moreover, a Group Concept Mapping (GCM) survey synthesized the knowledge and opinions of researchers, healthcare professionals and people with diabetes and their carers to identify gaps between what is important for user involvement and what is being done in practice. Finally, a consensus conference discussed the main gaps in knowledge and practice while developing plans to address the shortcomings. RESULTS: The literature review demonstrated that user involvement is an effective strategy for diabetes care, prevention and research, given the right support and conditions, but gaps and key challenges regarding the value and impact of user involvement approaches were found. The GCM process identified 11 major gaps, where important issues were not being sufficiently practised. The conference considered these gaps and opportunities to develop new collaborative initiatives under eight overall themes. CONCLUSIONS: User involvement is effective and adds value to diabetes care, prevention and research when used under the right circumstances. CODIAC developed new learning about the way in which academic and research knowledge can be transferred to more practice-oriented knowledge and concrete collaborative initiatives. This approach may be a potential new framework for initiatives in which coherence of process can lead to coherent outputs.

Readability analysis and concept mapping of PROMs used for headache disorders.

OBJECTIVE: To assess the readability and the comprehensiveness of patient-reported outcome measures (PROMs) utilized in primary headache disorders literature. BACKGROUND: As the health-care landscape has evolved toward a patient-centric model, numerous PROMs have been developed to capture treatment outcomes in patients with headache disorders. For these PROMs to advance our understanding of headache disorders and their treatment impact, they must be easy to understand (i.e., reading grade level 6 or less) and comprehensively capture what matters to patients with headache. The aim of this study was to (a) assess the readability of PROMs utilized in headache disorders literature, and (b) assess the comprehensiveness of PROMs by mapping their content to a health-related quality of life framework. METHODS: In this scoping review, recently published systematic reviews were used to identify PROMs used in primary headache disorders literature. Readability analysis was performed at the level of individual items and full PROM using established readability metrics. The content of the PROMs was mapped against a health-related quality-of-life framework by two independent reviewers. RESULTS: In total, 22 PROMs (15 headache disorders related, 7 generic) were included. The median reading grade level varied between 7.1 (interquartile range [IQR] 6.3-7.8) and 12.7 (IQR 11.8-13.2). None of the PROMs were below the recommended reading grade level for patient-facing material (grade 6). Three PROMs, the Migraine-Treatment Assessment Questionnaire, the Eurolight, and the European Quality of Life 5 Dimensions 3 Level Version, were between reading grade levels 7 and 8; the remaining 19 PROMs were above reading grade level 8. In total, the PROMs included 425 items. Most items (n = 134, 32%) assessed physical function (e.g., work, activities of daily living). The remaining items assessed physical symptoms (n = 127, 30%; e.g., pain, nausea), treatment effects on symptoms (n = 65, 15%; e.g., accompanying symptoms relief, headache relief), treatment impact (n = 56, 13%; e.g., function, side effects), psychological well-being (n = 41, 10%; e.g., anger, frustration), social well-being (n = 29, 7%; e.g., missing out on social activities, relationships), psychological impact (n = 14, 3%; e.g., feeling [not] in control, feeling like a burden), and sexual well-being (n = 3, 1%; e.g., sexual activity, sexual interest). Some of the items pertained to treatment (n = 27, 6%), of which most were about treatment type and use (n = 12, 3%; e.g., medication, botulinum toxin), treatment access (n = 10, 2%; e.g., health-care utilization, cost of medication), and treatment experience (n = 9, 2%; e.g., treatment satisfaction, confidence in treatment). CONCLUSION: The PROMs used in studies of headache disorders may be challenging for some patients to understand, leading to inaccurate or missing data. Furthermore, no available PROM comprehensively measures the health-related quality-of-life impact of headache disorders or their treatment, resulting in a limited understanding of patient-reported outcomes. The development of an easy-to-understand, comprehensive, and validated headache disorders-specific PROM is warranted.

Relevance and feasibility of principles for health and environmental risk decision-making.

Globally, national regulatory authorities are both responsible and accountable for health and environmental decisions related to diverse products and risk decision contexts. These authorities provided regulatory oversight and expedited market authorizations of vaccines and other therapeutic products during the COVID-19 pandemic. Regulatory decisions regarding such products and situations depend upon well-established risk assessment and management steps. The underlying processes supporting such decisions were outlined in frameworks describing the complex interactions between factors including risk assessment and management steps as well as principles which help guide risk decision-making. In 2022, experts in risk science proposed a set of 10 guiding principles, further examining the intersection and utility of these principles using 10 diverse risk contexts, and inviting a broader discourse on the application of these principles in risk decision-making. To add to this information, Canadian regulatory practitioners responsible for evaluating health and environmental risks and establishing policies convened at a Health Canada workshop on Principles for Risk Decision-Making. This review reports the results derived from this interactive engagement and provides a first pragmatic analysis of the relevance, importance, and feasibility of such principles for health and environmental risk decision-making within the Canadian regulatory context.

A framework for best practices in clinical outcome assessment (COA) concept mapping: a case study.

PURPOSE: Mapping or matching the items in a clinical outcome assessment (COA) to concepts that define a condition is a common method for evaluating a COA's concept coverage. The purpose of this research was to address the lack of formal guidance for conducting this task by developing a framework for best practices in COA concept mapping and applying it to a case study. METHODS: To develop the framework, we examined the literature and created a draft set of best practices which was then reviewed by experienced researchers through focus groups before being finalized. To conduct the case study, we extracted data from a systematic review of knee osteoarthritis (KO) symptoms and impacts and used the framework to map relevant concepts to items in the SF-36v2® Health Survey (SF-36v2). RESULTS: The framework guides researchers in defining the purpose of and data sources for the mapping, establishing guiding principles and decision-making thresholds, and conducting the mapping exercise. The results of the case study demonstrate the usefulness of the framework in identifying 27/36 items (75%) in the SF-36v2 that addressed concepts that define KO. CONCLUSION: This case study illustrates how the framework for best practices in COA concept mapping may be used, highlighting how establishing clear concept definitions and guiding principles and following a structured process throughout can help produce consistent, reliable, and reproducible results. The results from this rigorous approach can provide valuable evidence to support decisions about the appropriateness of a COA for the intended patient population.

In health-related quality of life research, mapping items in a clinical outcome assessment (COA) to concepts that define a health condition is one way to evaluate an instrument's content validity (or, how well the instrument addresses the concepts it intends to measure). Without formal guidance on how to do this mapping, researchers can be inconsistent. This article describes the development of a framework for best practices in COA concept mapping. Informed by the literature and input from researchers with expertise in COA development and evaluation, the final framework guides researchers through the mapping process from start to finish, from helping to define the purpose of the task and identify the data sources, to establishing guiding principles and decision-making thresholds, conducting the mapping, and displaying the results. A case study­in which items from the SF-36v2^® Health Survey were mapped to concepts from a systematic review of knee osteoarthritis symptoms and impacts­shows the framework in action, demonstrating how following the best practices can lead to consistent results that can support the evaluation of an instrument's content validity.

Group concept mapping for health professions education scholarship.

While explicit conceptual models help to inform research, they are left out of much of the health professions education (HPE) literature. One reason may be the limited understanding about how to develop conceptual models with intention and rigor. Group concept mapping (GCM) is a mixed methods conceptualization approach that has been used to develop frameworks for planning and evaluation, but GCM has not been common in HPE. The purpose of this article is to describe GCM in order to make it more accessible for HPE scholars. We recount the origins and evolution of GCM and summarize its core features: GCM can combine multiple stakeholder perspectives in a systematic and inclusive manner to generate explicit conceptual models. Based on the literature and prior experience using GCM, we detail seven steps in GCM: (1) brainstorming ideas to a specific "focus prompt," (2) preparing ideas by removing duplicates and editing for consistency, (3) sorting ideas according to conceptual similarity, (4) generating the point map through quantitative analysis, (5) interpreting cluster map options, (6) summarizing the final concept map, and (7) reporting and using the map. We provide illustrative examples from HPE studies and compare GCM to other conceptualization methods. GCM has great potential to add to the myriad of methodologies open to HPE researchers. Its alignment with principles of diversity and inclusivity, as well as the need to be systematic in applying theoretical and conceptual frameworks to practice, make it a method well suited for the complexities of contemporary HPE scholarship.

Concept mapping - increased potential as a retrieval-based task.

Concept mapping is a practical task for enhancing learning performance. Learners usually construct concept maps while studying the learning material or after studying. In the first case, the learning material is available during construction, and learners are less involved in retrieval practice from memory (study-based concept mapping; SCM). In the second case, the learning material is absent during construction, and the learners rely on retrieving information from memory (retrieval-based concept mapping, RCM). RCM is assumed to be associated with lower concept map quality and higher cognitive load but better elaboration and learning performance than SCM. This study investigated how the availability of the learning material influenced these variables in biology classrooms. Unlike other studies, this study provided learners with an authentic learning environment and prior concept mapping training. After the concept mapping training, n = 129 secondary school students were assigned to an SCM or RCM condition in a quasi-experimental design. As expected, students in the RCM condition constructed concept maps of lower quality but outperformed SCM students concerning elaboration activities and learning performance. The perceived intrinsic cognitive load was higher in the RCM condition. The results indicate that using concept mapping as a retrieval practice could support students' learning in biology.

Core outcomes for speech-language services in Ontario schools: a group concept mapping study and guiding framework.

BACKGROUND: Establishing the most important outcomes for school-based speech-language therapy is essential to guide future research and program evaluation for these services. Many health disciplines have developed core outcomes sets (COS) for this purpose. A COS encompasses the most important outcomes for particular health services as identified by appropriate interested parties. These interested parties usually represent health care providers and those with the health condition. In this paper, we report the development of a guiding framework for a COS for speech-language therapy services in schools in a Canadian context. METHODS: Using a group concept mapping method, we identified the outcomes for inclusion in the COS guiding framework through the elicited opinions of key interested parties: speech-language therapists, teachers, and family members of children with speech, language, and communication needs. We extracted 103 statements (potential outcomes) from a previous data set of interview transcripts. We then asked participants to sort the statements into conceptually similar groups, which were aggregated and transformed into a cluster map using multidimensional scaling followed by hierarchical cluster analysis. Participants also rated each statement on 5-point scales for importance and feasibility. We calculated mean ratings for individual statements and for all statements in a cluster, for all participants and for participant groups separately. RESULTS: We identified seven core outcomes for school-based speech-language services in Ontario, Canada. These included: classroom-based services, a holistic approach, support for teachers, care coordination, accessible services, family supports, and student success. All outcomes were rated highly for importance. Feasibility ratings were consistently below importance ratings. All participant groups concurred that a holistic approach was the most important outcome and accessible services was the least feasible outcome to achieve. CONCLUSIONS: The seven outcomes identified in this study are recommended to guide the development of a full COS to direct future research and program evaluation for school-based speech-language services. These outcomes have not been widely included in previous research and should be incorporated into future research alongside specific intervention outcomes. Data for some outcomes may be available from non-traditional sources such as administrative data sets. Consequently, their use for program evaluations should be accompanied by appropriate institutional support to allow speech-language therapists to make meaningful use of appropriate outcomes data.

How to improve the system of care for adolescents with emotional and behavioural problems from the perspective of care providers: a concept mapping approach.

BACKGROUND: Emotional and behavioural problems (EBP) are the most common mental health issues during adolescence, and their incidence has increased in recent years. The system of care for adolescents with EBP is known to have several problems, making the provision of care less than optimal, and attention needs to be given to potential improvements. We, therefore, aimed to examine what needs to be done to improve the system of care for adolescents with EBP and to assess the urgency and feasibility of the proposed measures from the perspective of care providers. METHODS: We used Concept mapping, a participatory mixed-method research, based on qualitative data collection and quantitative data analysis. A total of 33 stakeholders from 17 institutions participated in our study, including psychologists, pedagogues for children with special needs, teachers, educational counsellors, social workers and child psychiatrists. RESULTS: Respondents identified 43 ideas for improving of the system of care for adolescents with EBP grouped into 5 clusters related to increasing the competencies of care providers, changes at schools and school systems, support for existing services, transparency of the care system in institutions and public administration, and the adjustment of legislative conditions. The most urgent and feasible proposals were related to the support of awareness-raising activities on the topic of EBP, the creation of effective screening tools for the identification of EBP in adolescents, strengthening the role of parents in the process of care, comprehensive work with the family, creation of multidisciplinary support teams and intersectoral cooperation. CONCLUSIONS: Measures which are more accessible and responsive to the pitfalls of the care system, together with those strengthening the role of families and schools, have greater potential for improvements which are in favour of adolescents with EBP. Care providers should be invited more often and much more involved in the discussion and the co-creation of measures to improve the system of care for adolescents with EBP.

Dysphagia Management in the Emergency Department: Using Concept Mapping to Identify Actionable Change to Improve Services.

BACKGROUND: Integrated speech-language pathology (SLP) services within the emergency department (ED) may facilitate timely dysphagia management. However, there are multiple patient and logistical factors specific to the ED that challenge the delivery of optimal dysphagia referral and management practices within this setting. The aim of the current study was to engage a stakeholder group to identify prioritised, actionable goals that could help enhance dysphagia management within the ED. METHODS AND PROCEDURES: Applying concept mapping methodology, 16 ED stakeholders from SLP, medical, nursing, and leadership participated in semi-structured interviews to develop action statements which were sorted and ranked for importance and changeability. Multidimensional scaling and hierarchical cluster analysis were used to organise data in clusters with unifying themes before statements were ranked by importance and changeability. OUTCOMES AND RESULTS: Stakeholders identified 53 unique statements, grouped into 8 clusters. Review of the 8 clusters identified 3 overarching aspects for change: (a) Improving processes related to identification and referral of patients as well as communication; (b) Teamwork and collaboration amongst the ED multidisciplinary team and SLP; and (c) Improving staffing and access to training resources for SLP and nursing teams. Seventeen statements were within the Go-zone rated highest for importance and changeability) with the highest rated statement being: Clear documentation by SLP re: recommendations. CONCLUSION: The current data identified multiple aspects of service provision that require change to facilitate improved dysphagia referral and management services in the ED. Collaborative actions are required by both SLP and the ED multidisciplinary team to help optimise dysphagia services.

Supporting self-determination of individuals with severe or profound intellectual and multiple disabilities according to relatives and healthcare professionals: A concept mapping study.

BACKGROUND: This study aimed to identify perspectives of relatives and healthcare professionals regarding self-determination support for people with severe or profound intellectual and multiple disabilities, highlighting agreements and differences in their viewpoints. METHOD: Following a concept mapping study, online focus group meetings yielded statements on self-determination support from relatives (residential facilities: n = 6, family homes: n = 7) and healthcare professionals (residential facilities: n = 9, family home: n = 5). Participants clustered and rated statements, resulting in four concept maps interpreted by experts (N = 6). RESULTS: The 285 statements were categorised into 5-7 clusters per map, revealing key strategies for self-determination support: communication and choice making (facilitated by aids), sensitivity, familiarity, and collaboration among involved parties. CONCLUSION: Each group placed different emphasis on these strategies, highlighting importance of continuous support in their implementation. Future research should prioritise practical implementations of these strategies to enhance self-determination.

Testing the interrater reliability of integrated interpretations using a problem-solving model.

[Purpose] A method for evaluating integrated interpretation skills, which is an important educational goal in clinical practice, is yet to be established. This study examined the interrater reliability of a problem-solving model that was developed as a novel assessment method. [Participants and Methods] Three students created problem-solving models using fictitious case data. Ten clinical practice supervisors with at least 3 years of experience were asked to score the models, and the intraclass correlation coefficient (2, 1) was calculated. [Results] The intraclass correlation coefficient was 0.88, which indicates a good result. [Conclusion] Good interrater reliability was obtained using the problem-solving model, which suggests that this model may be used to assess integrated interpretation skills in clinical practice.

Development and validation of a psoriasis treatment acceptability measure through group concept mapping.

BACKGROUND: Psoriasis is a common autoimmune dermatologic condition which has a pronounced negative impact on patient quality of life and disease burden. Currently, there are a number of treatments available for psoriasis, with differences in efficacy, mechanism of action, mode of administration, adverse effects, and tolerability. However, a reliable, validated patient-reported instrument to address patient expectations and of psoriasis treatment has not been developed. This project was undertaken with the aim of developing a fit-for-purpose self-reported instrument to inform patient expectations and preferences of psoriasis treatments. METHODS: Two studies, both utilizing qualitative and quantitative methods, were conducted in patients within the entire spectrum of psoriasis severity. In Study 1, a group concept mapping (GCM) exercise was conducted with dermatologists and moderate-to-severe psoriasis patients to identify concepts important in the treatment of psoriasis. In Study 2, a preliminary Treatment Acceptability Questionnaire (TAQ) was developed using GCM-derived concepts from Studies 1 and 2, followed by cognitive debriefing (CD) telephone interviews of the preliminary TAQ. In Study 2, another GCM exercise was conducted with mild and newly diagnosed psoriasis patients. Psychometric analyses were performed on the TAQ to evaluate validity and reliability. RESULTS: The Study 1 GCM exercise generated 43 concepts from moderate-to-severe psoriasis patients (n = 20) and dermatologists (n = 10). In Study 2, 37 GCM concepts were generated from mild and newly diagnosed psoriasis patients (n = 20). From the 2 GCM exercises, 28 concepts were selected to form the preliminary TAQ; CD interviews indicated strong understanding and relevance of TAQ items among patients with disease ranging from mild to severe. The final TAQ consisted of 20 items; psychometric analysis demonstrated strong validity and reliability of the TAQ. CONCLUSIONS: The TAQ is a novel psychometrically validated patient-reported instrument to inform healthcare providers of patients' expectations of and preferences for treatment of their psoriasis and can help in shared decision making between patients and physicians.

What are important ingredients for Intensive Home Support for people with severe mental illness according to experts? A concept mapping approach.

BACKGROUND: Deinstitutionalization in mental health care has been an ongoing process for decades. More and more people with severe mental illness (SMI), who previously lived in residential supported housing settings and were formerly homeless, are now living independently in the community but need intensive support to enable independent living. The support provided by regular outpatient teams is inadequate for this target group. This study explored the ingredients for an alternative form of outpatient support: intensive home support (IHS). METHODS: Concept mapping was used, following five steps: (1) brainstorming, (2) sorting, (3) rating, (4) statistical analysis & visual representation, and (5) interpretation. Purposive sampling was used to represent several perspectives, including researchers, professionals, peer workers, and policy makers. RESULTS: Experts (n = 17) participated in the brainstorming step and the sorting and rating steps (n = 14). The 84 generated statements were grouped into 10 clusters:. (1) housing rights; (2) informal collaboration; (3) reciprocity in the community; (4) normalization and citizenship; (5) recovery; (6) sustainable funding; (7) equivalence; (8) flexible, proactive 24/7 support; (9) public health and positive health; and (10) integrated cooperation in support at home. CONCLUSIONS: Given the diversity of the ingredients contained in the clusters, it seems that IHS should be designed according to a holistic approach in collaboration with several sectors. Additionally, IHS is not only the responsibility of care organizations but also the responsibility of national and local governments. Further research about collaboration and integrated care is needed to determine how to implement all of the ingredients in practice.

International consensus on occupational therapy interventions for people with palliative care needs: A European Association for Palliative Care Group Concept Mapping study.

BACKGROUND: While evidence shows that occupational therapists can play a key role in the care of people with palliative care needs, more knowledge about effective occupational therapy interventions for this group is needed. AIM: To identify, organise and prioritise intervention components considered to be effective within occupational therapy for people with palliative care needs from the perspective of occupational therapy clinicians, managers and researchers. DESIGN: Group Concept Mapping utilising a mixed methods participatory approach. Using a focus prompt, participants brainstormed, sorted, labelled and rated generated statements about effective occupational therapy intervention components. Multidimensional scaling analysis and cluster analysis were conducted. SETTING/PARTICIPANTS: Snowball recruitment was used to recruit participants. Participants included occupational therapists worldwide who were able to read and write in English and were working as clinicians, managers and/or researchers with occupational therapy interventions for people with palliative care needs. RESULTS: Seventy-two occupational therapists from 15 countries participated in the study representing Asia (n = 3, 20%), Europe (n = 8, 53%), Oceania (n = 2, 13%) and North America (n = 2, 13%). A total of 117 statements were identified and organised into five clusters: (1) being client-centred, (2) promoting occupational engagement to optimise quality of life, (3) involving the social and relational environment, (4) enabling occupations and (5) facilitating occupational adaptation. CONCLUSIONS: Five clusters of core occupational therapy intervention components were considered to be effective when supporting people with palliative care needs. Research should use this knowledge to inform future occupational therapy interventions for this group of people.

A consensus approach: Understanding the support needs of women in Newport West, Wales, to participate in breast screening.

INTRODUCTION: Breast screening is an effective way to improve the early detection of breast cancer and reduce mortality. Unfortunately, low uptake of screening is often reported. This study aimed to explore the support needs of women residing in Newport West, Wales, to participate in breast screening. METHODS: Group Concept Mapping, a structured participatory consensus approach, was used as the method. Participants completed three activities either online or offline: brainstorming to generate statements, sorting statements into themed categories; rating statements for perceived importance and accessibility (easy to get). RESULTS: Thirty-seven participants from seven ethnic groups took part. Sixty-three statements (items of support) were generated and sorted into seven conceptually similar clusters (themes) (Trusting that I will be respected; Reassurance about my experience; Accessibility and convenience; Practical support; Addressing cultural diversity; Information tailored to individual needs; Raising awareness and understanding of breast screening). The 'Trusting that I will be respected' cluster was rated most important, while the 'Practical support' cluster was rated least accessible. Some disparity between responses was found based on ethnicity, language, disability and previous attendance of breast screening. CONCLUSIONS: Women require a range of support to participate in breast screening. The results highlight the importance of ensuring women feel and are respected, instilling trust in the staff performing the screening, offering reassurance about positive experiences of breast screening and providing practical support, especially individualized/targeted support for people who do not speak and/or read English and those with a disability. PATIENT OR PUBLIC CONTRIBUTION: The public contributed to the development of the information sheet, consent form, recruitment and data collection method.

Development of a conceptual model of the capacity for patients to engage in their health care: a group concept mapping study.

BACKGROUND: Patient engagement is seen as a necessary component in achieving the triple aim of improved population health, improved experience of care, and lower per capita health care costs. While there has been a substantial increase in the number of tools and patient-centered initiatives designed to help patients participate in health decisions, there remains a limited understanding of engagement from the perspective of patients and a lack of measures designed to capture the multi-faceted nature of the concept. METHODS: Development of a concept map of patient engagement followed a five-step modified Group Concept Mapping (GCM) methodology of preparation, generation, structuring, analysis and interpretation. We engaged a Project Advisory Committee at each step, along with three rounds of survey collection from clinicians and patients for element generation (272 clinicians, 61 patients), statement sorting (30 clinicians, 15 patients), and ranking and rating of statements (159 clinicians, 67 patients). The survey of three separate samples, as opposed to focus groups of 'experts,' was an intentional decision to gain a broad perspective about the concept of patient engagement. We conducted the structure and analysis steps within the groupwisdom concept mapping software. RESULTS: The final concept map comprised 47 elements organized into 5 clusters: Relationship with Provider, Patient Attitudes and Behaviors, Access, Internal Resources and External Resources. There was considerable agreement in the way elements in each cluster were rated by patients and clinicians. An analysis of the importance of the constitutive elements of patient engagement relative to their addressability highlighted actionable items in the domain of Relationship with Provider, aimed at building trust and enabling patients to ask questions. At the same time, the analysis also identified elements traditionally considered barriers to engagement, like personal access to the internet and the patient's level of digital literacy, as difficult to address by the healthcare system, but also relatively less important for patients. CONCLUSIONS: Through our GCM approach, incorporating perspectives of both patients and clinicians, we identified items that can be used to assess patient engagement efforts by healthcare systems. As a result, our study offers specific insight into areas that can be targeted for intervention by healthcare systems to improve patient engagement.

Perspectives on consciousness in patients with disorders of consciousness from brain injury: group concept mapping study across clinic, research, and families.

BACKGROUND: An effective healthcare system depends on clinic, research, and patient/relatives interactions. Such interactions may at their core be challenged by misalignments of concepts and the practices that constitute them. The concept of consciousness and what is experienced and understood as signs of consciousness in patients with severe acquired brain injury is one of these potential areas of misalignment. Different perspectives and experiences of consciousness are challenging the delivery of care and the high-stake decision-making process on the potential withdrawal of treatment. The enhanced uncertainties call for reflections on how key stakeholders perceive and identify consciousness in current clinical encounters and practice. METHODS: The study empirically explores the actual experiences and conceptions of consciousness concerning patients with disorders of consciousness (DoC) from the perspectives of researchers, health professionals, and relatives of patients, to understand the challenges of the diversity of understandings of consciousness. Engaging the stakeholders by employing Group Concept Mapping methodology, the study developed a situated conceptual map, which reflects nuances and the importance of perspectives on and signs of consciousness. RESULTS: Twenty-seven participants contributed to the generation of ideas, 14 took part in the structuring of statements and 10 took part in the validation meeting to interpret the cluster rating map. A total of 85 unique statements were identified and organized into six clusters: (1) Presence, (2) Intentional Activity, (3) Experience of self, (4) Participation in Social Interaction, (5) (Repeated) Response, and (6) Unspecific Reaction. The conceptual mapping demonstrates an extensive overlap in perspectives on consciousness among participants, prioritizing signs that are observable at the bedside. CONCLUSIONS: The study provides a first step toward a future framework for the difficult process of decision-making concerning a segment of patients with DoC. The study highlights the importance of repeatable signs of consciousness observed at the bedside and the patient's ability to participate in social interactions, while also considering the importance of non-clinically observable signs of consciousness.

Logical definition-based identification of potential missing concepts in SNOMED CT.

BACKGROUND: Biomedical ontologies are representations of biomedical knowledge that provide terms with precisely defined meanings. They play a vital role in facilitating biomedical research in a cross-disciplinary manner. Quality issues of biomedical ontologies will hinder their effective usage. One such quality issue is missing concepts. In this study, we introduce a logical definition-based approach to identify potential missing concepts in SNOMED CT. A unique contribution of our approach is that it is capable of obtaining both logical definitions and fully specified names for potential missing concepts. METHOD: The logical definitions of unrelated pairs of fully defined concepts in non-lattice subgraphs that indicate quality issues are intersected to generate the logical definitions of potential missing concepts. A text summarization model (called PEGASUS) is fine-tuned to predict the fully specified names of the potential missing concepts from their generated logical definitions. Furthermore, the identified potential missing concepts are validated using external resources including the Unified Medical Language System (UMLS), biomedical literature in PubMed, and a newer version of SNOMED CT. RESULTS: From the March 2021 US Edition of SNOMED CT, we obtained a total of 30,313 unique logical definitions for potential missing concepts through the intersecting process. We fine-tuned a PEGASUS summarization model with 289,169 training instances and tested it on 36,146 instances. The model achieved 72.83 of ROUGE-1, 51.06 of ROUGE-2, and 71.76 of ROUGE-L on the test dataset. The model correctly predicted 11,549 out of 36,146 fully specified names in the test dataset. Applying the fine-tuned model on the 30,313 unique logical definitions, 23,031 total potential missing concepts were identified. Out of these, a total of 2,312 (10.04%) were automatically validated by either of the three resources. CONCLUSIONS: The results showed that our logical definition-based approach for identification of potential missing concepts in SNOMED CT is encouraging. Nevertheless, there is still room for improving the performance of naming concepts based on logical definitions.

Informal antidepressant strategies for nursing home residents: two group concept mapping studies.

OBJECTIVES: To identify and structure potential informal antidepressant strategies that can be used in daily practice for nursing home residents alongside formal treatments. METHODS: In a first Group Concept Mapping study, residents, relatives, and professional caregivers (N = 124) brainstormed on strategies residents could use to prevent or alleviate depression. In a second study, the same participants (N = 110) reported strategies for use by others. Furthermore, participants rated the expected effectiveness and feasibility of the suggested strategies. Simultaneously, all strategies were sorted by experts and clustered using multidimensional scaling and hierarchical cluster analysis. RESULTS: Six clusters emerged for strategies by residents themselves and five clusters for strategies by others. For residents' strategies, the clusters Being socially connected and Participating in activities were perceived as most effective, as was the cluster Offering personal attention for strategies by others. Participants perceived Creating a healthy living environment as the most feasible cluster executed by residents. Within strategies by others, the clusters Offering personal attention, Using positive treatment/approach, and Using or adapting the physical environment were perceived as the most feasible. CONCLUSION: The results indicated the importance of social connectedness, a personalized and positive approach by significant others, and tailored activity programs. The results also suggest that adaptations to the physical environment within nursing homes may be an easy applicable strategy to prevent or alleviate depression in residents. Although more research is needed, these findings may guide daily practice and the development of interventions that include informal strategies.Supplemental data for this article can be accessed online at https://doi.org/10.1080/13607863.2022.2057427 .

A Cautionary Tale: Exploring Stakeholder Emotions During Curricular Change Using Group Concept Mapping.

PhenomenonCurricular change is essential but challenging. Change efforts often struggle and some fail due to well-articulated challenges as well as other barriers less understood. The curricular change literature characterizes the organizational and operational features of successful change yet virtually ignores stakeholder emotions. A deeper understanding of these emotional responses during the change process could enhance participant and organizational well-being and support change success. Approach In 2019, data were collected at one large North American medical school using group concept mapping methodology, an asynchronous mixed methods approach. We sought to generate themes characterizing the emotional responses of faculty, administrative staff, and students across multiple stakeholder groups participating in the new and traditional (legacy) curricula 27 months after curricular change initiation. Participants brainstormed, sorted, and rated statements on emotional responses. Rating participants rated each statement using a Likert scale from 1 (does not resonate) to 4 (very strongly resonates) according to this prompt: "This emotional response resonates with my emotional experience during the curricular change." Multidimensional scaling and hierarchical cluster analyses were used to generate emotional profiles and compare them across stakeholders. Findings Of 335 stakeholders invited, 123 contributed to brainstorming (36.7%), 153 completed rating (45.7%) and 33 completed sorting (9.9%). Participants generated six themes of emotional responses to curricular change: enthusiastic, apprehensive, overwhelmed, missed opportunities, uncertain, and abandoned. The enthusiastic theme overall had the highest mean statement ratings while the abandoned theme had the lowest. Demographic subgroup analysis revealed new curriculum students (Class of 2021) were most enthusiastic while legacy curriculum students (Class of 2020) were more likely to feel abandoned. Overall, faculty and administrative staff were more enthusiastic than students whereas students rated the five other themes higher than faculty and administrative staff. InsightsCurricular change is emotionally taxing. Students in both curricula experienced greater uncertainty, apprehension, sense of missed opportunities, and feeling overwhelmed than did faculty and administrative staff. Legacy curriculum students rated statements in the abandoned cluster highest while new curriculum students rated statements in the enthusiastic cluster highest. Given the ubiquity of curricular change which often includes a legacy cohort, medical schools embarking on this journey must carefully attend to the varied emotional responses of their different stakeholder groups. The very activities recommended by organizational change models used in medical education, such as communicating wins early and often, could alienate legacy students, creating emotional polarization. These findings suggest that tailored communication strategies are necessary during change implementation to optimize success.