Active Involvement Of Patients Research Articles

Patient and family engagement in patient safety in the Eastern Mediterranean Region: a scoping review

BackgroundPatients can play a key role in delivering safe care by becoming actively involved in their health care. This study aimed at reviewing the literature for evidence of patients’ and families’ engagement in patient safety in the Eastern Mediterranean Region (EMR).MethodsWe conducted a scoping review of the literature published in English using PubMed, Medline, CINAHL, Scopus, ISI Web of Science, and PsycINFO until June 2023.ResultsA total of 9019 studies were screened, with 22 meeting the inclusion criteria. Our review found few published studies of patient and family engagement in patient safety research in the EMR. Thirteen studies explored the attitudes, perceptions, and/or experiences / preferences of patients, families, and healthcare providers (HCPs) regarding patient engagement in patient safety. Nine publications reported patient involvement in patient safety activities at varying levels. Three categories of factors were identified that may affect patient involvement: patient-related (e.g., lack of awareness on their role in preventing harms, unwillingness to challenge HCPs’ authority, and cultural barriers); HCP-related (e.g., negative attitudes towards patient engagement, poor patient-provider communication, and high workload); and healthcare setting-related (e.g., lack of relevant policies and guidelines, lack of training for patients, and HCPs, and lack of patient-centered approach).ConclusionThis review highlighted limitations in the current literature on patient and family engagement in patient safety in the EMR, including both the depth of evidence and clarity of concepts. Further research is needed to explore how to actively involve patients and their families, as well as to determine whether such involvement translates into improved safety in practice.

Let’s (not) talk about sexual health: How sexual communication apprehension with healthcare providers and peer communication influence intentions to protect sexual health

ObjectiveThis study examined how patients’ clinical and peer interactions may affect their communication apprehension with healthcare providers, a major communication barrier to sexual health protective behaviors (SHPB). MethodsBetween January 2022 and February 2023, we conducted an online survey with 310 participants recruited through snowball sampling. Using structural equation modeling (SEM), we explored relationships among patient-provider interactions, peer communication about sex, communication apprehension with providers, and SHPB intentions. ResultsSignificant predictors of SHPB intentions included lower communication apprehension and more peer communication. Communication apprehension was a significant mediator in paths from peer communication and three types of patient-provider communication to SHPB intentions. ConclusionsOur study indicates the need to address communication barriers to increase patients’ SHPB intentions. Active patient involvement and patient-centered communication may open up discussions about sex in the clinical setting. Peer interactions, informed by scientific guidance, may reduce patients’ apprehension, leading to better health outcomes. Practice implicationsCommunication interventions are needed to promote collaborative patient-provider environments and peer sexual communication. Active involvement and evidence-based discussions can help patients navigate difficult conversations (e.g., like sex), improving SHPB.

The effectiveness of treatment depending on an adherence to dispensary observation and antiretroviral therapy in patients with HIV infection

Aim. Determination of the causes of deaths and analysis of the survival of people living with HIV, depending on an adherence to dispensary observation and treatment. Materials and methods. The analysis of socio-demographic characteristics and clinical and laboratory data of 284 adult HIV patients observed in 1999–2011 at the Lomonosov Interdistrict Hospital named after I. N. Yudchenko was carried out. Patients who followed the prescribed monitoring regimen (at least 2 times a doctor’s visit during the year) were considered committed to dispensary supervision. Patients who observed the regularity and continuity of monitoring and receiving antiretroviral therapy (ART) were considered committed to treatment. Among the patients included in the study, 115 people were committed to treatment or follow-up and 169 patients were non-committed. Objective (biological) indicators of adherence and effectiveness of treatmentwere the number of CD4 lymphocytes and the level of HIV viral load. Based on the method of comparing survival curves, factors related to the life expectancy of HIV patients were assessed, taking into account the gender of patients, their adherence to monitoring and treatment, indicators of HIV viral load and the number of CD4 lymphocytes and the outcome of the disease from the moment of registration at the dispensary and over the next 120 months (after 3 months, 6 months, 1.5 years, 2 years, 5, 7 and 10 years). Results and discussion. Significant differences were found in the survival curves of patients who received and did not receive ART (117.9 and 91.4 months, p<0.005) and patients who were committed and non-committed to therapy (116.9 and 83.8 months, p<0.005). Regardless of adherence to outpatient follow-up and therapy, the survival time of women compared to men for the entire follow-up period was longer (105.0 and 92.4 months, respectively, p<0.005). Among those committed to treatment, 21% of patients died due to concomitant somatic pathology, 5% from injuries incompatible with life. In the group of those committedto follow–up, the causes of deaths in 12% were various somatic pathology, brain lymphoma — in 1% and injuries incompatible with life — in 3% of cases. The highest mortality rates were recorded among patients who were not exposed to ART (71%) and the routine of follow-up (52%). Almost half of these patients (49%) died from secondary HIV infections, of which 85% of cases were posthumously diagnosed with tuberculosis, mainly the pulmonary form of the disease. The second most common cause of death was violent death, including drug poisoning. Conclusion. Regular dispensary observation, timely initiation of ART and adherence to therapy make it possible to control the disease, prevent the development of opportunistic pathology, and improve the quality and life expectancy of patients with HIV infection. Despite the increased availability of ART and strategies for active involvement and retention of patients in dispensary care, issues of patient adherence to therapy remain key in the management of HIV patients.

Dental patients as partners in promoting quality and safety: a qualitative exploratory study.

Active patient involvement in promoting quality and safety is a priority for healthcare. We investigated how dental patients perceive their role as partners in promoting quality and safety across various dental care settings. Focus group sessions were conducted at three dental practice settings: an academic dental center, a community dental clinic, and a large group private practice, from October 2018-July 2019. Patients were recruited through flyers or word-of-mouth invitations. Each session lasted 2.5 h and patients completed a demographic and informational survey at the beginning. Audio recordings were transcribed, and a hybrid thematic analysis was performed by two independent reviewers using Dedoose. Forty-seven participants took part in eight focus group sessions; 70.2% were females and 38.3% were aged 45-64years. Results were organized into three major themes: patients' overall perception of dental quality and safety; patients' reaction to an adverse dental event; and patients' role in promoting quality and safety. Dental patients were willing to participate in promoting quality and safety by careful provider selection, shared decision-making, self-advocacy, and providing post-treatment provider evaluations. Their reactions towards adverse dental events varied based on the type of dental practice setting. Some factors that influenced a patient's overall perception of dental quality and safety included provider credentials, communication skills, cleanliness, and durability of dental treatment. The type of dental practice setting affected patients' desire to work as partners in promoting dental quality and safety. Although patients acknowledged having an important role to play in their care, their willingness to participate depended on their relationship with their provider and their perception of provider receptivity to patient feedback.

Suicide Interventions in Spain and Japan: A Comparative Systematic Review.

(1) Background: This systematic review presents an overview of psychological interventions in suicide published between 2013 and 2023 in Spain and Japan, sparked by Spain's alarming recent increase in suicide rates and the potential exemplar of Japan's reduction efforts. (2) Methods: Following the PRISMA checklist, the databases Web of Science, Scopus, PubMed, and PsycInfo were searched using the terms [("suicide" OR "suicidal behavior" OR "suicidal attempt" OR "suicidal thought" OR "suicidal intention") AND ("prevention" OR "intervention" OR "psychosocial treatment" OR "Dialectical Behavior Therapy" OR "Cognitive Therapy" OR "psychotherap*")] AND [("Spain" OR "Spanish") OR ("Japan" OR "Japanese")]. We included articles published in peer-reviewed academic journals, written in English, Spanish, and Japanese between 2013 and 2023 that presented, designed, implemented, or assessed psychological interventions focused on suicidal behavior. (3) Results: 46 studies were included, concerning prevention, treatment, and training interventions. The risk of bias was low in both Spanish and Japanese studies, despite the lack of randomization of the samples. We identified common characteristics, such as psychoeducation and coping skills. Assertive case management was only highlighted in Japan, making an emphasis on active patient involvement in his/her care plan. (4) Conclusions: The findings will help professionals to incorporate into their interventions broader, more comprehensive approaches to consider more interpersonal components.

Factors influencing the development and implementation of pediatrics in family-centered care model: A scoping review

Introduction: Family-Centered Care (FCC) in neonatal healthcare emphasizes collaborative efforts between medical staff and families. This approach, rooted in mutual respect and active family participation, aims to enhance infant care outcomes. However, understanding the underlying forces behind FCC interventions remains challenging due to the diverse methods employed in healthcare practices. Methods: We conducted a scoping review in June 2023. We searched Embase, Medline, CINAHL, Web of Science, Cochrane Library, Joanna Briggs Institute (JBI), PubMed, and PsycINFO. Inclusion criteria encompassed English language studies on Family-centered care and related factors, without date or geographic restrictions. Results: Fifteen pertinent studies meeting the inclusion criteria were identified. Five pivotal components of modern FCC emerged: effective communication, active patient and family involvement, robust family support systems, organizational considerations, and the nurturing attitude of nurses. Discussion: Family-centered care emerges as a comprehensive healthcare approach focusing on the interdependence of patients, healthcare professionals, and families. By recognizing this interconnection, FCC seeks to ensure the satisfaction and well-being of all stakeholders. Implementing FCC strategies presents challenges, emphasizing the need for continuous exploration and refinement. Conclusion: Embracing family-centered care principles enriches patient-centered healthcare by involving families as active partners in the care process. Acknowledging the integral role of families enhances care quality and contributes to improved patient outcomes. Ongoing research and dialogue are essential for refining FCC models, ensuring successful implementation, and fostering patient-centered healthcare environments.

Health Care Professionals' Perspectives Before and After Use of eDialogue for Team-Based Digital Communication Across Settings: Qualitative Study.

Orthopedic surgical treatment is a transversal task that requires the active involvement of patients, relatives, and health care professionals (HCPs) across various settings. However, after hospital discharge, communication is challenged and undertaken primarily by phone. New digital communication solutions have the potential to create a space for seamless and patient-centered dialogue across discipline and sector boundaries. When evaluating new communication solutions, knowledge about HCPs' needs and perspectives of use must be explored, as it is they who are responsible for implementing changes in practice. This study aimed to (1) investigate HCPs' perceptions of current communication pathways (phase 1) and (2) explore their experiences of using a simple messenger-like solution (eDialogue) for team-based digital communication across settings (phase 2). We used a triangulation of qualitative data collection techniques, including document analysis, observations, focus groups, and individual interviews of HCPs before (n=28) and after (n=12) their use of eDialogue. Data collection and analysis were inspired by the Consolidated Framework for Implementation Research (CFIR) to specifically understand facilitators and barriers to implementation as perceived by HCPs. HCPs perceive current communication pathways as insufficient for both patients and themselves. Phone calls are disruptive, and there is a lack of direct communication modalities when communication crosses sector boundaries. HCPs experienced the use of eDialogue as a quick and easy way for timely interdisciplinary interaction with patients and other HCPs across settings; however, concerns were raised about time consumption. eDialogue can provide needed support for interdisciplinary and cross-sectoral patient-centered communication. However, future studies of this solution should address its impact and the use of resources.

Psycho-Oncological Self-Help Groups in Bavaria: The Current Situation and Suggestions for Improvement

Background: Self-help groups (SHGs) are an important cornerstone of the German health care system. Especially collaborations of SHGs with cancer centers enable active patient involvement in cancer care. We investigated the current situation and unmet needs of Bavarian SHGs in order to point out possible options of action. Methods: We conducted a cross-sectional study with Bavarian psycho-oncological SHGs. Via e-mail, an online survey was sent to 150 SHGs registered at the BZKF (Bavarian Cancer Research Center). We assessed activities and needs of the SHGs as well as the nature of collaborations with cancer centers. We focused on adaptations during the COVID-19 pandemic and the inclusion of migrants. Results: 46 (33.66%) SHGs participated, while 39 (84.78%) completed the questionnaire. During the COVID-19 pandemic, 50% of the SHGs reported less meetings. 22.7% changed to online meetings or other formats (43.2%). 20.9% of the SHGs had regular meetings with the cancer center, and 23.1% with the psycho-oncology. 51.2% evaluated the psycho-oncological services as neutral to dissatisfying due to lack of information, availability, and long waiting times. The SHGs indicated needs concerning interventions (coping strategies, digital applications, etc.), information, and better communication. Efforts for overcoming inequalities seemed rare: only 13.6% of the SHGs and 16.2% of the cancer centers had services for migrants. Conclusions: This study gave an overview of current activities and needs of Bavarian SHGs. The implementation of patient guides, comprehensive information material, and low-threshold psycho-oncological services should be objectives in future care to increase patient satisfaction. The needs for services for migrants should be investigated in more detail.

Are Saudi Arabian Patients Willing to Be Deprescribed Their Medications? An Exploratory Study.

Deprescribing is a complex process that requires active patient involvement, so the patient's attitude to deprescribing is crucial to its success. This study aimed to assess predictors of Saudi Arabian patients' willingness to deprescribe. In this cross-sectional study, adult patients from two hospitals in Riyadh completed a self-administered questionnaire gathering data on demographic information and the Arabic revised Patients' Attitudes Towards Deprescribing (rPATD) questions. Descriptive analysis and binary logistic regression were used to analyze the data. A total of 242 patients were included (mean age 59.8 (SD 11.05) years, range 25-87 years; 40% 60-69 years; 54.1% female). The majority (90%) of participants were willing to have medications deprescribed. Willingness to deprescribe was significantly associated with the rPATD involvement factor (OR=1.866, 95% CI 1.177-2.958, p=0.008) and the patient's perception of their health status (OR=2.08, CI=1.058-4.119, p=0.034). The majority of patients were willing to have one or more medications deprescribed if recommended by their doctors. Patient perceptions about their own health and their involvement in deprescribing were important predictive factors that could shape counseling and education strategies to encourage deprescribing.

Remote monitoring of patients with rheumatoid arthritis: a mixed methods evaluation across six hospitals in London, UK.

This study evaluated the scale-up of a remote monitoring (RM) service, capturing monthly Rheumatoid Arthritis Impact of Disease scores and patient-generated text messages, for patients with rheumatoid arthritis (RA; in remission or with low disease activity) attending routine outpatient clinics across six hospitals. We explored patients and staff experiences and implementation outcomes. A pragmatic, mixed methods approach was used, with active patient involvement throughout. We undertook a rapid review, analysed service-level data, and conducted a patient survey and patient and staff interviews, informed by the Capability, Opportunity, Motivation, Behaviour (COM-B) and Exploration, Preparation, Implementation, Sustainment (EPIS) theoretical frameworks. The review included 37 articles, covering themes of patient and clinician acceptability, engagement, feasibility and clinical impact. Service-level data (n = 202) showed high levels of patient engagement with the service. The patient survey (n = 155) showed patients felt the service was easy to use, had confidence in it and felt it improved access to care. Patient interview (n = 22) findings mirrored those of the survey. Motivating factors included increased responsiveness and ease of contact with clinical teams. Views from staff interviews (n = 16) were more mixed. Some implementation barriers were specific to roll-out sites. Prioritisation of staff needs was emphasised. Patients were positive about the service and engagement was high. Staff views and engagement were more mixed. Results suggest that equal levels of patient and staff engagement are required for sustainability. These findings further our understanding of the implementation challenges to scaling RM interventions for patients with RA in routine care settings.

Orthopaedic trauma patients’ experiences with emergency department care and follow-up through Virtual Fracture Care review: a qualitative study

ObjectivesThis study aimed to identify factors influencing orthopaedic trauma patients’ experiences and satisfaction with emergency department (ED) care and follow-up through Virtual Fracture Care (VFC) review workflow.DesignThis study employed an...

Patient and relative partnerships at the Center for Research with Patients and Relatives at Odense University Hospital: building a research unit for and with patients and relatives

Globally, the focus on user involvement in health research has increased substantially. In Denmark, it is still at an early stage with individual researchers being met with increasing demands without having much experience, guidance, or good practices to act upon. We are a group of researchers affiliated with User Perspectives and Community-based Interventions at the University of Southern Denmark (SDU) and the Center for Research with Patients and Relatives (ForSa-P) at the Odense University Hospital (OUH). We work with patients and relatives in several aspects of our work – research and teaching; we share our experiences and learning in a joint session. 
 Research for and with patients and relatives, or actively involving patients and relatives in all parts of the research process; it is the first of five goals in the 2021-2025 research strategy of OUH and SDU. The strategic document states that: good research will be based on existing knowledge and be strengthened by the patients’ own experiences of their illnesses and life situations.
 The first action was to establish a center for patients, relatives and researchers to support a culture shift towards patient-oriented collaborative health research and generate knowledge on collaborative health research practices. 
 The research center ForSa-P opened in January 2022 and embodies co-productive values: 1) patients and relatives have an integral role in the center, with the Center being headed by an academic and patient lead; and 2) all types of knowledge are valued, used and produced. We consider ‘involvement’ a way of being, not a research method. The Center supports researchers and patients to develop a fruitful and sustainable collaboration and we build a research programme focused on understanding the dynamics of these partnerships and their effect on the research produced and the people involved. 
 Using a speed-date method, all 44 hospital departments reflected on their collaborations with patients and relatives, and how they plan to work towards ‘more active involvement of patients and relatives in all steps of the research process by 2025’. This yielded an in-depth overview of collaborative practices across different departments and different types of research, good practices as well as concerns and limitations. We gained a better understanding of researchers’ and patients’ questions in relation to collaborative health research, which were translated in researchable questions on patient involvement (what is a ‘good patient’ according to a researcher seeking a patient-partner, what is a professional patient and do they contribute differently?).
 The research center developed a code of conduct to guide patients and researchers in building partnerships. The center’s staff visited several departments to discuss the topic of patient involvement and introduce the code of conduct. In November, patients, relatives and researchers of the research center presented their work at the hospital’s annual research week; for the first time, the event was open (and free) to patients and relatives to attend. 
 In this presentation we reflect on our mission and vision and our achievements one year after the launch of the research center, and two years in the strategic plan 2021-2025.

Keterlibatan Pasien dalam Aktivitas Meningkatkan Patient Safety

This review aims to examine patient engagement in care activities to improve patient safety. The research method uses an integrative literature review. A systematic search was carried out in the databases PubMed, ProQuest, Science Direct, Medline, Cochrane Library and Winley Online Library. The keywords used in the search are: (Patient participation OR Patient involvement OR Patient engagement) AND (Health care OR Care) AND (Patient safety). Articles must come from international databases, be published within the last 5 years and focus on patient engagement, care and patient safety with full text. Articles will be excluded if they do not focus on objectives, are more than 5 years old and if they have been reviewed. As a result of research, nine articles identified in this review that the patient's role in care can improve patient safety and the nurse's role in encouraging patients to participate in care can contribute to improving patient safety. In conclusion, patient involvement in patient safety activities can improve the safety of patients in hospitals.
 
 Keywords: Patient Safety, Patient Involvement, Care

OP55 Did It Matter? Developing A Common Framework For Characterizing Impact Of Patient Involvement In Health Technology Assessment

IntroductionWhile the impact of health technology assessments (HTAs) is often not evaluated, some HTA bodies measure the impact of patient involvement in their processes. Evaluating how patient involvement is perceived by all stakeholders may help to improve practices and avoid activities that unduly burden patient and HTA communities. Frameworks and tools have been designed to analyze the impact of patient engagement along the healthcare development lifecycle. Reporting on the impact of patient involvement in HTA-specific activities, however, continues to be infrequent, unstandardized, and not comprehensive.Having a common framework to characterize and report on the impact of patient involvement may enable this practice to be optimized and harmonized across HTA contexts.MethodsThe Patient and Citizen Involvement Interest Group (PCIG) within Health Technology Assessment International set out to contextualize this impact and support reporting. A questionnaire was developed, piloted, and rolled out to collect multistakeholder personal perceptions of the impact of patient involvement in individual HTAs. Questions included: “What difference did you feel patient involvement made in the HTA activity?” and “What would have been missed without patient involvement?”. From January 2019 to September 2021, 24 responses (including one joint submission) were collected through the PCIG’s network from HTA bodies (11), patient representatives (12), and industry representatives (2) from North America (5), South America (3), Europe (13), and Australia (3).ResultsCommon themes were extracted from these experiences to characterize the impact of patient participation in HTA processes. Based on these commonalities, a harmonized framework consisting of three “domains” is proposed: impact on the decision-making process; impact on patient stakeholders; and impact on the HTA body. The framework includes a set of items under each domain to support reporting.ConclusionsBy having common language and measures, the HTA community can harmonize processes across jurisdictions to evaluate and communicate the value of patient involvement in HTA. Improving consistent reporting may facilitate more efficient process improvement for meaningful integration of patient stakeholders into HTA decision-making.

Active involvement of patients, radiation oncologists, and surgeons in a multidisciplinary team approach: Guiding local therapy in recurrent, metastatic rectal cancer.

Despite the extensive implementation of an organized multidisciplinary team (MDT) approach in cancer treatment, there is little evidence regarding the optimal format of MDT. We aimed to investigate the impact of patient participation in MDT care on the actual application rate of metastasis-directed local therapy. We identified all 1211 patients with locally advanced rectal cancer treated with neoadjuvant radiochemotherapy at a single institution from 2006 to 2018. Practice patterns, tumor burden and OMD state were analyzed in recurrent, metastatic cases. With a median follow-up of 60.7 months, 281 patients developed metastases, and 96 (34.2%), 92 (32.7%), and 93 (33.1%) patients had 1, 2-5, and >5 lesions, respectively. In our study, 27.1% were managed in the MDT clinic that mandated the participation of at least four to five board-certified multidisciplinary experts and patients in decision-making processes, while the rest were managed through diverse MDT approaches such as conferences, tumor board meetings, and discussions conducted via phone calls or email. Management in MDT clinic was significantly associated with more use of radiotherapy (p = 0.003) and more sessions of local therapy (p < 0.001). At the time of MDT clinic, the number of lesions was 1, 2-5, and >5 in 9 (13.6%), 35 (53.1%), and 19 (28.8%) patients, respectively. The most common states were repeat OMD (28.8%) and de novo OMD (27.3%), followed by oligoprogression (15%) and induced OMD (10.6%). Our findings suggest that active involvement of patients and radiation oncologists, and surgeons in MDT care has boosted the probability of using local therapies for various types of OMD throughout the course of the disease.

Anti-Vascular Endothelial Growth Factor Drugs for Age-Related Macular Degeneration

What Is the Issue?&#x0D; &#x0D; Wet age-related macular degeneration (AMD) is a serious health concern that causes reduced vision-related function, poor overall quality of life, and increased health care resource usage.&#x0D; Anti-vascular endothelial growth factor (VEGF) drugs are the first-line treatment for wet AMD, and they are injected into the eye. These drugs can slow disease progression but are expensive and require trained medical professionals to administer and monitor treatment response.&#x0D; The criteria for initial injection, maintenance, and discontinuation of anti-VEGF drugs in patients with wet AMD remain unclear.&#x0D; &#x0D; What Did We Do?&#x0D; &#x0D; To inform decisions about the appropriate use of anti-VEGF drugs to treat adults with wet AMD, CADTH sought to identify and summarize recommendations about criteria for the diagnosis of wet AMD and best practices for subsequent treatment with anti-VEGF drugs.&#x0D; An information specialist searched the peer-reviewed and grey literature for clinical practice guidelines published since 2018.&#x0D; &#x0D; What Did We Find?&#x0D; &#x0D; Three evidence-based guidelines recommend optical coherence tomography (OCT) to assess patients with suspected wet AMD. The National Institute for Health and Care Excellence (NICE) guidelines then strongly recommend fundus fluorescein angiography only when OCT does not exclude neovascular disease.&#x0D; The evidence-based guidelines recommend anti-VEGF drugs for wet or neovascular AMD in adults, particularly for patients with recent disease progression. One guideline suggests starting anti-VEGF treatment as soon as possible once the diagnosis of wet AMD is made.&#x0D; The NICE guideline suggests that there may not be any clinically significant distinctions in the effectiveness and safety of various anti-VEGF treatments, including aflibercept, bevacizumab, and ranibizumab, indicating a need for an individualized approach when selecting specific anti-VEGF drugs. However, 1 guideline is inconsistent with NICE, as it suggests choosing bevacizumab first.&#x0D; During the maintenance phase of using anti-VEGF drugs, it is important to closely monitor the patient's response and the disease activity and adjust the injection intervals accordingly.&#x0D; Guidelines recommend taking an individualized approach and emphasizing active patient involvement in switching and discontinuing anti-VEGF drugs for adults with wet AMD.&#x0D; Guidelines or guidance documents without a literature search or unclear methods provided generally consistent recommendations with the included evidence-based guidelines.&#x0D; We did not identify any evidence-based guidelines regarding the use of faricimab or brolucizumab. However, NICE published technology appraisals supporting the use of recently approved anti-VEGF drugs (faricimab and brolucizumab) as alternative options for patients who meet similar criteria for treatment with bevacizumab or aflibercept, and under agreed pricing conditions.&#x0D; &#x0D; What Does It Mean?&#x0D; &#x0D; All identified guidelines consistently recommend anti-VEGF drugs for adults with wet active AMD, with some providing guidance on the use of OCT and other ophthalmological assessments to identify criteria for starting and adjusting treatment.&#x0D; These guidelines recommend personalized and patient-centred approaches for selecting, switching, and discontinuing anti-VEGF medications. Cost is also a crucial factor in decision-making, especially for aflibercept, ranibizumab, and recently approved anti-VEGF drugs such as faricimab and brolucizumab.&#x0D; Further research and evidence-based guidelines are necessary to confirm whether newer drugs can be used in similar situations as older drugs.&#x0D;

A cross-sectional study on factors influencing patient participation in undergraduate medical education in a public and private hospital in Johannesburg, South Africa

BackgroundThe active involvement of patients in medical education is a common practice globally. Despite this, there is a global paucity of data on patients’ views on their role in medical education. As such this study aimed to identify factors that influence patient participation in undergraduate medical education in public and private hospitals in Johannesburg.MethodsA cross-sectional study was conducted, using a 23-question, self-designed, paper questionnaire to collect data on patients’ perceptions of student involvement in their care – with regard to consent, confidentiality, ethics, and patient preferences. Participants were recruited on a voluntary basis in the Departments of Medicine, Surgery, and Gynaecology, at selected hospital sites. Fisher’s Exact and Chi-Square statistical tests were used where appropriate.ResultsTwo hundred and one adult patients, comprised of 150 public sector patients and 51 private sector patients, completed the questionnaire. One hundred and sixty-nine patients (84,1%) were willing to participate in undergraduate medical education and no notable difference between these sectors was demonstrated (p = 0,41). The results further demonstrated that the main factors influencing patient participation in undergraduate medical education across both sectors were (1) the presence of a supervising professional, (2) the perceived degree of invasiveness of a procedure, and (3) the perceived expertise of the student. In addition, data across other key themes such as consent, confidentiality, ethics, and patient preferences and perceptions were elucidated.ConclusionsThis study demonstrates that the majority of inpatients across the public and private sectors are willing to participate in undergraduate medical education to facilitate the development of healthcare professionals. It also demonstrated that most patients have a positive experience. However, more measures of quality informed consent need to be instituted to optimise the current role of the South African public health sector, whilst facilitating the development of a similar role for the South African private sector in future clinical education. In addition, further research is necessary to evaluate these findings in a South African context.

Beyond Participation: Evaluating the Role of Patients in Designing Oncology Clinical Trials.

Historically, subject matter experts and healthcare professionals have played a pivotal role in driving oncology clinical trials. Although patients have been key participants, their deliberate and active contribution to the design and decision-making process has been limited. This scoping review aimed to examine the existing literature to scope the extent of active patient engagement in the design of oncology clinical trials and its corresponding influence on trial outcomes. We conducted a systematic search using two databases, namely MEDLINE (Ovid) and EMBASE, to identify relevant studies exploring patient engagement in cancer-related clinical research design. We identified seven studies that met the eligibility criteria. The studies highlighted the benefits of active patient involvement, such as improved recruitment strategies, and the attainment of more patient-centered trial outcomes. The influence of patient involvement varied from tangible developments like patient-friendly resources to indirect impacts like improved patient experiences and potentially higher adherence to trial intervention. The future of clinical trials should prioritize patients' values and perspectives, with regulatory bodies fostering these practices through clear guidelines. As the concept of patient centricity takes root in oncology research, the involvement of patients should evolve beyond mere participation.

Reporting involvement activities with children and young people in paediatric research: a framework analysis

BackgroundThe active involvement of patients and the public in the design and delivery of health research has been increasingly encouraged, if not enforced. Knowledge of how this is realised in practice, especially where children and young people (CYP) are concerned, is limited, partly due to the low level of reporting of patient and public involvement (PPI) in general. The aim of this work was to assess how researchers funded by the National Institute for Health and Care Research (NIHR) report the involvement of CYP in the design and conduct of child health research to better understand the opportunities offered to CYP, and the realities of involvement in practice.MethodsA participation matrix, analysis framework and accompanying tools were adapted from existing frameworks, including a child-rights informed framework, the Guidance for Reporting Involvement of Patients and the Public Checklist Short Form (GRIPP2SF), and NIHR reporting expectations. Child-focused research reports were identified from the NIHR Journals Library, including any interventional or observational study involving CYP aged 0–< 24 years. In two co-design workshops with healthcare professionals and CYP, we tested and refined the participation matrix, analysis framework and accompanying tools.ResultsOnly thirty-two NIHR reports out of 169 (19%) were identified as relevant and included reporting of PPI with CYP. We identified significant variability in the way PPI with CYP was reported. Only 4/32 (12%) reports fully met NIHR (and GRIPP2SF) reporting criteria. Only 3/32 (9%) reports formally evaluated or self-reflected on PPI activities with CYP, whilst 15/32 (47%) provided minimal information about CYP involvement. The most common approach to involving CYP (23/32, 72%) was through the medium of existing groups or networks.ConclusionDespite the NIHR’s commitment to increase the quality, transparency, and consistency of reporting PPI, the reporting of involvement with CYP remains sub-optimal. Neglecting to report key details of involvement methods and impacts deprives the research community of knowledge to advance the field of delivering ‘meaningful’ PPI with CYP. Practical guidance on how researchers can report the processes and outputs of CYP involvement more rigorously may help child health researchers to involve them more meaningfully. This research offers practical tools informed by CYP to aid the reporting process.

Factors influencing the implementation of shared decision-making in breast cancer care: protocol for a mixed-methods study

IntroductionChile is committed to actively involving patients in their healthcare. However, little is known about how this is translated into clinical encounters. Breast cancer (BC) is the first cause of...