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Background and objective: Children with medical complexity (CMC) have chronic and severe conditions leading to medical fragility. CMC represent less than 1% of children but account for one-third of paediatric healthcare expenditures. Enrollment to a complex care program (CCP) decreases health care resource utilization while improving parental satisfaction. An in-depth understanding of how these changes operate in real-world setting is needed to further support CMC and their families. This study aimed at assessing the possible reasons for a decrease in emergency department (ED) visits and hospitalization length of stay related to enrollment to a CCP, based on parental perspectives. Study design: Using a qualitative approach, data were collected using in-depth, semi-structured interviews with parents of CMC enrolled in a CCP from a university hospital centre in Montreal, Canada. The interview guide was co-constructed by an interdisciplinary team, including a parent partner and a clinical nurse coordinator. Themes have been identified inductively, using thematic analysis. Results: Parents identified personalized care, family empowerment and guidance as enablers arising from the CCP that contributed to the decrease in hospital-delivered care utilization. Improvement in medical baseline condition was also identified as a contributing factor, while not necessarily related to program's support. Conclusions: In this study, we identified personalized care, parental empowerment, and guidance as three strategies for a CCP to potentially decrease ED visits and hospital length of stay, from the parents' perspective. Parents identified the clinical nurse coordinator as playing a central role in supporting the implementation of these strategies.

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Introduction: There is a growing interest in personalized decision-making in oncology. According to the Integrated Oncological Decision-Making Model (IODM), decisions should be based on information from three domains: (1) medical technical information, (2) patients' general health status and (3) patients' preferences and goals. Little is known about what kind of tool/strategy is used to collect the information, by whom this is collected (nurse, clinician) when this is collected (moment in the care pathway), and how this information should be collected and integrated within decision-making in oncological care pathways, and what its impact is. Methods: We searched PUBMED, Embase and Web of Science in October 2023 for studies looking at tools to collect and integrate information from the three domains of the IODM. We extracted data on the content and implementation of these tools, and on decision and patient outcomes. Results: The search yielded 2576 publications, of which only seven studies described collection of information from all three domains (inclusion criteria). In the seven included studies, information on the three domains was collected through dialogue, questionnaires, and assessments (what) by a nurse (2 out of 7 studies) or by other members of the Multi-Disciplinary Team (by whom) (5 out of 7 studies). Members of the Multi-Disciplinary Team subsequently integrated the information (5 out 7 studies) during their meeting (when), with patients and family attending this meeting in 2 studies (how). In terms of decision outcomes, 5 out of 7 studies compared the treatment recommendations before and after implementation of the tools, showing a modification of the treatment plan in 3% to 53% of cases. The limited data on patient outcomes suggest positive effects on well-being and fewer complications (3 out of 7 studies). Conclusion: The seven studies identified that integrated information from the three IODM domains into treatment decision-making lacked comprehensive information regarding the strategies, process, timing and individuals involved in implementing the tools. Nevertheless, the few studies that looked at patient outcomes showed promising findings.

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PURPOSE: Skilful communication prompts quality patient care. Informal caregivers occupy a crucial role when caring for hospitalised older patients living with frailty. However, skilful communication with both patients and informal caregivers during ward rounds has not been studied. Thus, we aimed to explore communication preferences of patients and informal caregivers during ward rounds. METHODS: We conducted semi-structured interviews with hospitalized patients and informal caregivers until information redundancy occurred. We used inductive coding of the transcribed interviews followed by a reflexive thematic analysis. RESULTS: The study included 15 patients and 15 informal caregivers. Patients had a median age of 85 years (range 75-100 years) and seven patients were females. Informal caregivers' median age were 45 years (range 38-80 years) and 13 were females. Three themes were generated: (1) building relationships and conveying information, (2) alleviating informal caregiver strain and (3) sharing the decision-making process. Themes highlighted the importance of collaborative and empathetic approaches in healthcare interactions, emphasizing interpersonal communication skills, such as fostering professional relationships. The interviews unveiled informal caregiver burden stemming from disempowerment during hospital discharge process and managing mistrust within the healthcare system. The shared decision-making process should address patients' and informal caregivers' needs and circumstances. CONCLUSIONS: Communication preferences of a population of older patients living with frailty and informal caregivers during ward rounds encompass interpersonal communication, demonstrating ample time, and being seen as a human being. Informal caregivers value being included in the decision-making process. Skilful communication includes for doctors to recognize informal caregivers' narratives and burdens.

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The stepped care model (SCM) is a patient-centred approach to mental health care, offering a range of services from least to most intensive, tailored to individual needs. This scoping review examines the adoption, effectiveness, challenges and implications associated with applying SCM within primary mental health service delivery. Evidence from global sources suggests the model is viable, effective and useful. This review explores the literature available, clarifies fundamental concepts and identifies existing knowledge gaps. The literature search included CINAHL, MEDLINE, PsycINFO, Scopus, the Federation University library, Google and Google Scholar databases. A systematic keyword-based search using terms like "stepped care model," "mental health," and "primary care"; and a combination of keywords and subject headings, were used. The search strategy was refined by considering factors such as relevance, publication date, objectives and outcomes. This strategy yielded 20 papers compiled in this review. They include randomised controlled trials and cross-sectional studies. The review supports SCM adoption in primary mental health care but acknowledges the need for further research. Key inclusions of the review include cost-effectiveness, diverse diagnoses, efficacy and the model's structural configuration. Clear treatment details, delivery methods, intervention durations and chronological sequences are essential. This systematic approach enhances generalisability across different SCM models and areas, strengthening reliable inferences. In summary, the SCM holds promise for enhancing mental health service delivery. However, there is a need to further examine the factors that determine its effectiveness and understand the different ways in which SCM is implemented. Such inquiry forms the foundation for implementing and advancing mental health care services in Australia and internationally.

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BACKGROUND: Lack of sexual orientation and gender identity (SOGI) data creates barriers for lesbian, gay, bisexual, transgender, and queer (LGBTQ+) people in health care. Barriers to SOGI data collection include physician misperception that patients do not want to answer these questions and discomfort asking SOGI questions. This study aimed to assess patient comfort towards SOGI questions across five quaternary care adult congenital heart disease (ACHD) centres. METHODS: A survey administered to ACHD patients (≥18 years) asked (1) two-step gender identity and birth sex, (2) acceptance of SOGI data, and (3) the importance for ACHD physicians to know SOGI data. Chi-square tests were used to analyse differences among demographic groups and logistic regression modelled agreement with statement of patient disclosure of SOGI improving patient-physician communication. RESULTS: Among 322 ACHD patients, 82% identified as heterosexual and 16% identified as LGBTQ+, across the age ranges 18-29 years (39.4%), 30-49 years (47.8%), 50-64 years (8.7%), and > 65 years (4.0%). Respondents (90.4%) felt comfortable answering SOGI questions. Respondents with bachelor's/higher education were more likely to "agree" that disclosure of SOGI improves patient-physician communication compared to those with less than bachelor's education (OR = 2.45; 95% CI 1.41, 4.25; p = .0015). CONCLUSION: These findings suggest that in this largely heterosexual population, SOGI data collection is unlikely to cause patient discomfort. Respondents with higher education were twice as likely to agree that SOGI disclosure improves patient-physician communication. The inclusion of SOGI data in future studies will provide larger samples of underrepresented minorities (e.g. LGBTQ+ population), thereby reducing healthcare disparities within the field of cardiovascular research.

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INTRODUCTION: Patient-centred care has become increasingly important in health care. Patient-reported experience measures (PREM) are used to measure patient experiences in health care, but the availability of psychometrically validated PREMs is limited. The Patient Reported Experience Measure in Addiction Treatment (PREMAT) is a PREM developed with extensive service user input to assess the experiences of people in residential addiction treatment services. In this study we aimed to evaluate the psychometric properties of the Dutch translation of the PREMAT, the PREMAT-NL. METHODS: Ninety-three participants completed the PREMAT-NL approximately 45 days after starting addiction treatment as part of a naturalistic prospective multi-centre study in Belgium. We examined the factorial structure using principal component analysis with Promax oblique rotation and assessed the internal consistencies of the subscales and total score using Cronbach's α. Additionally, we explored the relationship of PREMAT-NL scores with demographic and clinical variables. RESULTS: The PREMAT-NL had a four-factor structure, with good internal consistencies of the subscales (Cronbach's α >0.70) and excellent internal consistency of the total score (Cronbach's α = 0.94). The PREMAT-NL total score was negatively skewed, and four score categories were proposed based on z-scores. PREMAT-NL scores correlated weakly with the type of treatment centre (r = 0.21, p < 0.05) and with previously received treatment for addiction (r = -0.25, p < 0.05). DISCUSSION AND CONCLUSIONS: Although the factor structure and thus the appropriate use of subscales need further investigation, the findings of this study support the use of the PREMAT-NL total score as a valid and reliable PREM to evaluate residential addiction treatment services.

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OBJECTIVE: To explore the value of anonymous patient feedback for audiology students, examining alignment between student and patient judgments on communication skills and assessing how students utilise the feedback. DESIGN: This study utilised a mixed methods design, employing a Likert survey to collect patient and student ratings on professionalism, compassion, and listening and talking skills in clinical encounters. Semi-structured interviews investigated the student perspective of receiving patient feedback. STUDY SAMPLE: 13 Audiology students and 31 patients who were placed at, or received care at an Audiology teaching clinic. RESULTS: Patients' ratings across all measures were higher on average when compared to students' self-ratings, only correlating significantly for the measure concerning students' talking skills. Five themes and one subtheme were identified: Emotional impacts, A worthwhile experience, Contrasting priorities, Patients retake centre stage, and Self-reflective learners (subtheme Self-doubt). CONCLUSIONS: This study reveals that patient feedback led student Audiologists to report heightened seriousness in their interactions and increased attention on skills vital for patient-centred care. The process boosted students' confidence and reinforced awareness of the patient's perspective. Further research is needed to gauge the extent of these effects and explore the feasibility of implementing a large-scale patient feedback program in audiology training settings.

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Background: Allergic rhinitis (AR) has a high burden of disease in the Asia-Pacific region (APAC). Although guidelines provide recommendations regarding the diagnosis and treatment of AR, it is increasingly being recognised that there are gaps in their implementation. Patient-centred care involves accounting for the specific needs and desires of patients as well as including the patient in the decision-making process, and this may provide a means to reduce these gaps and consequently the burden of AR. Methods: A group of 11 experts in immunology and otorhinolaryngology from APAC provided information regarding their practices and experiences in the management of AR through an online survey. The group then discussed the barriers and solutions for the implementation of patient-centred care across the patient journey in a face-to-face meeting. Results: Key barriers to the implementation of patient-centred care for AR in APAC included a lack of patient awareness of the condition and treatment options, low adherence to treatments, financial constraints for patients, and time constraints for physicians. The solutions proposed include improving the knowledge of the patients about their conditions, the use of shared decision-making, the consideration of patient characteristics when choosing treatments, and the use of outcome measures to aid the optimisation of patient care. We provide specific recommendations for clinical practice. Conclusion: A greater focus on patient-centred approaches has the potential to improve the management of AR in APAC. More emphasis should be placed on each patient's specific health needs and desired outcomes.

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INTRODUCTION: A Norwegian-Danish research team identified a gap in research regarding how surgical patients felt about their post-operative care needs being met in hospitals. A study was subsequently developed to understand their subjective assessments of how they value the perceived fulfilment of their actual care needs. The study was further informed by international calls to focus on the fundamentals of care practice. Our aim was to determine the extent to which surgical patients receiving elective treatment experience the physical environment, atmosphere and collaboration with staff as supportive of their care and treatment, and what this means for them after treatment. In addition, we aimed to document the extent to which patients experienced being understood and having influence in their care. METHODS: A descriptive observation study using a cross-sectional design. The validated Perioperative User Participation Perspectives (POUP) questionnaire was completed on the day of discharge by 194 adult (male and female) patients (mean age: 56 years) who had undergone elective surgery on gynaecological, internal medicine or orthopaedic wards. Agreement between the subjective importance of nursing care for patients and the perceived reality was determined. RESULTS: Agreement regarding the physical environment, a clean bed and clean surroundings was between 91.7 and 96.2%, and agreement with regard to a good relational atmosphere with staff it was 94.2 to 96.7%. In terms of the relational aspects of care, being understood and having influence the agreement was calculated to be 89.4 to 94.4%. However, 42.6% of the patients reported they were involved in drawing up a care plan. For those patients who valued collaborating in their care planning the congruency was 80%. CONCLUSION: A conducive atmosphere and a keen eye for the patients' wishes and needs is of particular importance at the time of discharge after elective surgery.

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OBJECTIVE: Investigating doctors' communicative practices for recommending surgery to amputees when the proposal counters patients' expectation. METHOD: Conversation Analysis of 77 videorecorded medical consultations at an Italian prosthesis clinic. RESULTS: Compared to the direct format doctors used to prescribe prosthesis, when suggesting surgery doctors adopted a more circuitous, indirect approach. They used a range of communication strategies, orientating to patients' likely resistance - indeed, patients were frequently observed to reject surgical options. CONCLUSIONS: Considering patients' expectations is part of a patient centred approach, hence the cautious ways in which doctors introduce the option of surgery. Moreover, doctors do not pursue recommending surgery when patients display their reluctance or resistance. PRACTICE IMPLICATIONS: Doctors in prosthetics clinics might adopt a more balanced communicative strategy that takes into account patients' perspectives, concerns and expectations, whilst but also providing patients with the necessary information to collaborate meaningfully to decision making.

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INTRODUCTION: Shared decision-making (SDM) is on the NHS policy agenda, and the preferred model for preference-sensitive decisions. This study establishes baseline patient-perceived SDM in a radical head and neck cohort, and explores patients' views on SDM in a large, specialist trust. METHODS: An SDM questionnaire was distributed to all radical head and neck radiotherapy patients (N = 165), June-December 2023. This combined a well-validated instrument for measuring SDM from the patient perspective, SDM-Q-9, with additional questions exploring patient views. Thematic analysis was used to construct and interpret themes. RESULTS: 65/165 (39%) questionnaires were returned. SDM-Q-9 mean standardised score was 78.6 (SD 26.3). There was a moderate ceiling effect (26%). Scores were not sensitive to sex (p = 0.64) or age (ρ = 0.1). Higher levels of SDM were perceived by participants who stated SDM was very important (51/65, 79%) than somewhat or not at all important (82.4 vs. 62.7; p = 0.02; Cohen d = 0.75). Individuals who discussed their personal priorities with the clinician (46/65, 70.8%), were more likely to be very satisfied with their involvement in SDM (89.1% vs. 52.9%). Thematic analysis generated three themes: Control, Desire for Transparency and Understanding, and Doctor as the Expert. CONCLUSION: Patient-perceived SDM levels are high for head and neck patients. Participants who value SDM also perceive higher levels of SDM. Patient satisfaction increases when individuals discuss their personal priorities. The modest response rate and self-selection bias affect the generalisability of the results. Only radiotherapy patients were included; those who chose alternative treatment may perceive different levels of SDM. The moderate ceiling effect may limit the use of SDM-Q-9 to measure impact of future interventions to improve SDM. IMPLICATIONS FOR PRACTICE: SDM-Q-9 should be combined with an objective, observer measure of SDM.

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WHAT IS KNOWN ON THE SUBJECT?: Patients do not always receive enough information about their diagnosis and their perceived participation in decision-making about their treatment is low. Some participants reported feeling very uncertain when the physician invited them to choose between these options. Others users expressed their satisfaction with the trend away from paternalistic attitudes in the health system. There is a trend towards pharmacological prescription as a first approximation. This contrasts with the recommendations of scientific organizations based on evidence and cost-effectiveness studies on the offer of psychological interventions as the first option. The user groups pointed out that active coping, based on exposure to anxiety-generating situations, made a significant contribution to alleviating their anxiety disorders. However, some of those interviewed rejected this type of intervention. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE?: Users diagnosed with anxiety disorders miss more information about the disorder and participation in its treatment. Opposite positions coexist in terms of participation in the choice of treatment. Pharmacological treatment is most commonly the first option offered. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: This study is an example in itself of the involvement of users in the healthcare process, and therefore placing them at the centre of attention, as reflected in healthcare policies and clinical practice guidelines. It promotes the identification of needs that users diagnosed of anxiety disorders may have, with the aim of putting in place, from healthcare professionals and health services, the necessary supports adapted to these. Mental health nurses are well-positioned to offer support and guidance during the process of involvement and shared decision-making. ABSTRACT: INTRODUCTION: An essential aspect of mental health treatment and recovery is the degree of involvement by health service users in the process. AIM/QUESTION: Explore the values, demands and preferences of persons diagnosed with anxiety disorders, their participation in the treatment provided, and the response of the health system in this regard. METHODS: A qualitative study was conducted, with 51 participants. Nine focus groups and four in-depth interviews took place. RESULTS: Three broad categories were identified: (1) diagnosis; (2) treatment options offered and shared decision-making; and (3) coping with the disorder. Sometimes patients do not receive enough information to cover their needs. A trend towards drug prescription as a first approach was observed, while active coping based on exposure to anxiogenic situations was indicated as the most effective option. CONCLUSION: Shared decision-making is a necessary aspect of treatment, and the therapeutic process should be adapted to match the service user's preferences, values and needs. IMPLICATIONS FOR THE PRACTICE: This research identifies the needs of patients diagnosed with anxiety disorders and promotes, therefore, from healthcare professionals and services, the provision of measures to meet these needs.

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INTRODUCTION: The quality of hospital care, especially surgery, is traditionally assessed using indicators derived from healthcare databases or safety indicators. Given the growing importance of placing the patient at the heart of care evaluation, the use of questionnaires such as the Patient-Reported Experience Measures and Patient-Reported Outcome Measures has become widespread in recent years. However, these tools-addressing factors such as satisfaction, pain management or wait times-only imperfectly reflect the patient's experience, and all such attempts at patient-centred care quality assessment rely on questions or indicators defined in advance by healthcare providers and health authorities. A biopsychosocial model may allow to better understand the patient experience and to improve care pathways. This study seeks to construct a narrative of the bariatric surgical care journey with instruments from narrative inquiry, propose a metanarrative that can serve as a basis for more sophisticated and reliable patient-focused care quality models and define indicators linked to patients' feelings and stories. METHODS AND ANALYSIS: To achieve these aims, 16 bariatric surgical patients at the hospital of Créteil, France (Centre Hospitalier Intercommunal de Créteil), will be included and interviewed once before and twice after surgery, at months 3 and 6. Narratives collected will be used to construct a metanarrative intended to encompass all possible narratives. This metanarrative may ultimately inform new patient care quality indicators, furthering care focused on patients and tailored to their needs and predispositions. ETHICS AND DISSEMINATION: The study is funded by the Group of Clinical Research and Innovation in Île-de-France and was approved by CPP SUD-EST VI Clermont-Ferrand (France) Research Ethics Committee. The results will be submitted for publication in peer-reviewed journals. The patient associations will be approached for the dissemination of the study results. TRIAL REGISTRATION NUMBER: NCT05092659.

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Introduction: Digital healthcare, especially virtual health, has changed nurses' jobs and skills. In the evolving healthcare landscape, nurses healthcare landscape is increasingly required to have diverse competencies to navigate the world of virtual health effectively. Objective: This study aims to qualitatively explore the role of nurses in virtual health and the competencies required to work in virtual health in Saudi Arabia, with a specific focus on SEHA virtual hospital. Methods: An online open survey with nursing experts was employed as the qualitative method approach during the initial phase of an online Delphi study design. Results: Twelve core competencies were identified: digital technology proficiency, professionalism, clinical expertise, leadership, legal and ethical considerations, care coordination, documentation, effective communication, patient assessment and diagnosis, patient safety, patient-centered care, and remote patient monitoring. Conclusions: The research emphasizes the crucial role of nurses in virtual hospitals and clinics, contributing to the expansion of the virtual healthcare environment. It presents a thorough competency framework that can guide the development of training programs and policies, enhancing the effectiveness of virtual healthcare delivery. Impact: The study provides a foundational competencies list that can guide the development of comprehensive training programs for nurses in virtual healthcare. Policymakers and educational leaders are encouraged to use these findings to create standardized practices and policies, enhancing the effectiveness and efficiency of virtual healthcare delivery.

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Objective: Prior research has not assessed the value of remote patient monitoring (RPM) systems for patients undergoing anticoagulation therapy after cardiac surgery. This study aims to assess whether the clinical follow-up through RPM yields comparable outcomes with the standard protocol. Methods: A crossover trial assigned participants to SOC-RPM or RPM-SOC, starting with the standard of care (SOC) for the first 6 months after surgery and using RPM for the following 6 months, or vice-versa, respectively. During RPM, patients used the Coaguchek© to accurately measure International Normalized Ratio values and a mobile text-based chatbot to report PROs and adjust the therapeutic dosage. The study assessed patients' and clinicians' experience with RPM and compared direct costs. Results: Twenty-seven patients participated. The median time in therapeutic range (TTR) levels during RPM were 72.2% and 50.6% for the SOC-RPM and RPM-SOC arms, respectively, and during SOC, they were 49.4% and 58.4% for SOC-RPM and RPM-SOC arms, respectively. Patients and the clinical team reported high trust and satisfaction with the proposed digital service. Statistically significant differences were only found in the cost of RPM in the RPM-SOC, which was higher than SOC in the SOC-RPM arm. Conclusions: Portable coagulometers and chatbots can enhance the remote management of patients undergoing anticoagulation therapy, improving patient experience. This presents a promising alternative to the current standard procedure. The results of this study seem to suggest that RPM may have a higher value when initiated after a SOC period rather than starting RPM immediately after surgery.Trial registration: ClinicalTrials.gov NCT06423521.

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Public engagement with research (PEwR) has become increasingly integral to research practices. This paper explores the process and outcomes of a collaborative effort to address the ethical implications of PEwR activities and develop tools to navigate them within the context of a University Medical School. The activities this paper reflects on aimed to establish boundaries between research data collection and PEwR activities, support colleagues in identifying the ethical considerations relevant to their planned activities, and build confidence and capacity among staff to conduct PEwR projects. The development process involved the creation of a taxonomy outlining key terms used in PEwR work, a self-assessment tool to evaluate the need for formal ethical review, and a code of conduct for ethical PEwR. These tools were refined through iterative discussions and feedback from stakeholders, resulting in practical guidance for researchers navigating the ethical complexities of PEwR. Additionally, reflective prompts were developed to guide researchers in planning and conducting engagement activities, addressing a crucial aspect often overlooked in formal ethical review processes. The paper reflects on the broader regulatory landscape and the limitations of existing approval and governance processes, and prompts critical reflection on the compatibility of formal approval processes with the ethos of PEwR. Overall, the paper offers insights and practical guidance for researchers and institutions grappling with ethical considerations in PEwR, contributing to the ongoing conversation surrounding responsible research practices.

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Background: South Africa (SA) has the largest antiretroviral therapy (ART) programme worldwide. Multiple factors contribute to virological failure (VF), including poor adherence and viral resistance mutations. A multidisciplinary team (MDT) clinic dedicated to those with VF may be of benefit; however, very little data from SA exist. Objectives: To assess whether an MDT approach achieved virological suppression (VS) in patients failing second-line-ART (2LART); assess the number of MDT sessions required to achieve VS; assess local resistance mutation patterns and whether the MDT reduced the number of genotypic resistance testing (GRT) required. Method: An observational, retrospective, cross-sectional chart review study was conducted between January 2018 and December 2019 at a Target High Viral Load (VL) MDT clinic in KwaZulu-Natal, SA. Results: Ninety-seven medical records were eligible. Women accounted for 63% of patients, with a mean age of 37 years. A significant reduction in the first VL measurement following the MDT was seen (median reduction 2374 c/mL; P < 0.001). This was maintained at the second VL measurement post-MDT (median reduction 2957 c/mL; P < 0.001). Patients attended a mean of 2.71 MDT sessions and 73.2% achieved VS, resulting in 61.86% fewer GRTs required. Of the GRTs performed, nucleoside reverse transcriptase inhibitors and non-nucleoside reverse transcriptase inhibitor-related mutations were noted most frequently. Conclusion: The MDT approach resulted in a significant reduction in VL, with most participants achieving VS. The MDT was successful in reducing the need for GRT. Resistance mutations were similar to those found in other studies conducted across SA.

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BACKGROUND: The rise of a new generation of intelligent neuroprostheses, brain-computer interfaces (BCI) and adaptive closed-loop brain stimulation devices hastens the clinical deployment of neurotechnologies to treat neurological and neuropsychiatric disorders. However, it remains unclear how these nascent technologies may impact the subjective experience of their users. To inform this debate, it is crucial to have a solid understanding how more established current technologies already affect their users. In recent years, researchers have used qualitative research methods to explore the subjective experience of individuals who become users of clinical neurotechnology. Yet, a synthesis of these more recent findings focusing on qualitative methods is still lacking. METHODS: To address this gap in the literature, we systematically searched five databases for original research articles that investigated subjective experiences of persons using or receiving neuroprosthetics, BCIs or neuromodulation with qualitative interviews and raised normative questions. RESULTS: 36 research articles were included and analysed using qualitative content analysis. Our findings synthesise the current scientific literature and reveal a pronounced focus on usability and other technical aspects of user experience. In parallel, they highlight a relative neglect of considerations regarding agency, self-perception, personal identity and subjective experience. CONCLUSIONS: Our synthesis of the existing qualitative literature on clinical neurotechnology highlights the need to expand the current methodological focus as to investigate also non-technical aspects of user experience. Given the critical role considerations of agency, self-perception and personal identity play in assessing the ethical and legal significance of these technologies, our findings reveal a critical gap in the existing literature. This review provides a comprehensive synthesis of the current qualitative research landscape on neurotechnology and the limitations thereof. These findings can inform researchers on how to study the subjective experience of neurotechnology users more holistically and build patient-centred neurotechnology.

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PURPOSE: The Assessment of Burden of ColoRectal Cancer (ABCRC)-tool is a unique tool that includes a PROM focused on health-related quality of life (HRQoL), functional outcomes and lifestyle assessment. Furthermore, it provides visualization of results and treatment advice. The tool aims to support follow-up consultations of colorectal cancer (CRC) patients. The purpose of this study was to evaluate the first experiences of patients and healthcare professionals (HCPs) with the ABCRC-tool. METHODS: The ABCRC-tool was implemented in two Dutch hospitals and used by 25 patients and 5 HCPs during follow-up care. Consultations were audio-recorded and their content was analyzed independently by two researchers. Semi-structured interviews with patients and HCPs were conducted after the consultation. Interviews focused on the overall experience with the tool, ease of use, interpretation of the PROM and the visualized results and on the added value of the tool. RESULTS: Audio recording revealed that multiple topics, relevant to patients, were discussed during consultations with the ABCRC-tool. Patients and HCPs appreciated the ABCRC-tool as it added structure to the consultation, was helpful in the preparation of consultations and provided useful and convenient treatment options. The tool was easy to use, and the visualization was clear and informative. HCPs suggested that the tool is likely to be most relevant for patients in the first year of follow-up. CONCLUSIONS: This study implies that the ABCRC-tool is of added value for patients and their HCPs. Future research should focus on the evaluation of broad implementation, across a wide range of CRC patients. IMPLICATIONS FOR CANCER SURVIVORS: The ABCRC-tool is a valid tool to support CRC survivors and HCPs to monitor and visualize experienced burden of disease and lifestyle parameters in order to optimize personalized care.

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OBJECTIVE: To evaluate the impact of a clinical decision support system (CDSS) to identify drug-related problems (DRPs) during community pharmacist medication reviews. DESIGN: Pilot 3-phase (group), open-label study. SETTING AND PARTICIPANTS: Two community pharmacies in Sarnia, Ontario, with pharmacists providing medication reviews to patients. STUDY PROCEDURES: Five pharmacists participated in three phases (groups). During Phase 1, pharmacists conducted medication reviews in 25 adult patients using the usual approaches. In Phase 2, pharmacists were trained to use a CDSS to identify DRPs, and then conducted medication reviews using the tool in a different group of 25 adult patients. In Phase 3, pharmacists conducted medication reviews without the aid of the CDSS in 25 additional adult patients. MAIN OUTCOME MEASURES: The primary outcome was recommendation to the primary care physician to alter pharmacotherapy based on medication review, assessed using mean number and frequency (yes/no) of recommendations by patient. Secondary outcomes included number of potential DRPs, actual DRPs, medication review duration time, pharmacist's perceptions of the CDSS and patient satisfaction with medication review. RESULTS: The mean number of recommendations to primary care physicians to alter pharmacotherapy per patient in Phases 1, 2 and 3 did not differ: 1.0 (SD = I.2) versus 1.5 (1.0) versus 1.5 (1.0), respectively; p = 0.223. The percentage of patients with a pharmacy recommendation sent to physicians across the phases, however, differed: 52% versus 80% versus 88%, respectively; p = 0.010, with more in Phases 2 and 3 compared to 1. There were more potential DRPs in group 2 compared to other groups. There were no differences in actual DRPs and medication review time. Pharmacists had positive attitudes about the CDSS. Patients were generally satisfied with their medication review. CONCLUSIONS: This small pilot study provides some preliminary evidence for performance and feasibility of a CDSS to identify DRPs that pharmacists will act on. Future research is recommended to validate these findings in a larger sample.