Older adult participation in cancer clinical trials: A systematic review of barriers and interventions.

Cancer is a disease of aging and, as the world's population ages, the number of older persons with cancer is increasing and will make up a growing share of the oncology population in virtually every country. Despite this, older patients remain vastly underrepresented in research that sets the standards for cancer treatments. Consequently, most of what we know about cancer therapeutics is based on clinical trials conducted in younger, healthier patients, and effective strategies to improve clinical trial participation of older adults with cancer remain sparse. For this systematic review, the authors evaluated published studies regarding barriers to participation and interventions to improve participation of older adults in cancer trials. The quality of the available evidence was low and, despite a literature describing multifaceted barriers, only one intervention study aimed to increase enrollment of older adults in trials. The findings starkly amplify the paucity of evidence-based, effective strategies to improve participation of this underrepresented population in cancer trials. Within these limitations, the authors provide their opinion on how the current cancer research infrastructure must be modified to accommodate the needs of older patients. Several underused solutions are offered to expand clinical trials to include older adults with cancer. However, as currently constructed, these recommendations alone will not solve the evidence gap in geriatric oncology, and efforts are needed to meet older and frail adults where they are by expanding clinical trials designed specifically for this population and leveraging real-world data.

ChatGPT as a tool to improve access to knowledge on sexually transmitted infections.

OBJECTIVES: Specific to sexual health, individuals in need of information may be adolescents who have limited ability to formally access healthcare. These digital natives may turn to ChatGPT to address their concerns on sexually transmitted infections (STI). We sought to evaluate the veracity of ChatGPT's responses to commonly asked questions on STIs. METHODS: We instructed ChatGPT (GPT 3.5) to answer STI questions from three domains, namely, (1) general risk factors for STIs, (2) access to care and diagnosis of STIs and (3) management of STIs and postexposure prophylaxis. The responses were recorded and checked against the US Centers for Disease Control and Prevention STI Treatment Guidelines 2021. RESULTS: Overall, the responses were concise and accurate. In terms of prevention, ChatGPT could also recommend measures like safe sex practices and human papillomavirus vaccination. However, it failed to recommend HIV pre-exposure prophylaxis. When an individual expressed a symptom that could potentially represent STI (eg, dyspareunia) ChatGPT appropriately provided reassurance that other possibilities exist, but advocated for testing. In terms of treatment, ChatGPT consistently communicated the importance of partner testing and follow-up testing, but at times, failed to highlight the importance of testing for other STIs. Overall, the advice given was not tailored to the specific individual's circumstances. CONCLUSIONS: ChatGPT can provide helpful information regarding STIs, but the advice lacks specificity and requires a human physician to fine-tune. Its ubiquity may make it a useful adjunct to sexual health clinics, to improve knowledge and access to care.

A systematic review of the mechanisms influencing engagement in diabetes prevention programmes for people with pre-diabetes.

AIMS: To identify barriers and enablers that influence engagement in and acceptability of diabetes prevention programmes for people with pre-diabetes. The results will provide insights for developing strategies and recommendations to improve design and delivery of diabetes prevention programmes with enhanced engagement and acceptability for people with pre-diabetes. METHODS: This review used a critical realist approach to examine context and mechanisms of diabetes prevention programmes. Medline, Embase, PsycInfo, Cinahl, Web of Science, Scopus and Pre-Medline were searched for English language studies published between 2000 and 2023. A quality assessment was conducted using Joanna Briggs Institute critical appraisal tools. RESULTS: A total of 90 papers met inclusion criteria. The included studies used a variety of quantitative and qualitative methodologies. Data extracted focused on barriers and enablers to engagement in and acceptability of diabetes prevention programmes, with seven key mechanisms identified. These included financial, environmental, personal, healthcare, social and cultural, demographic and programme mechanisms. Findings highlighted diverse factors that influenced engagement in preventive programmes and the importance of considering these factors when planning, developing and implementing future diabetes prevention programmes. CONCLUSIONS: Mechanisms identified in this review can inform design and development of diabetes prevention programmes for people with pre-diabetes and provide guidance for healthcare professionals and policymakers. This will facilitate increased participation and engagement in preventive programmes, potentially reducing progression and/or incidence of pre-diabetes to type 2 diabetes and improving health outcomes.

The female self-advocacy in Cancer Survivorship scale is a psychometrically sound measure of self-advocacy in male cancer survivors.

OBJECTIVE: To develop and psychometrically evaluate an adapted version of the Female Self-Advocacy in Cancer Survivorship (FSACS) Scale in men with a history of cancer. METHODS: This psychometric instrument development and validation study used a two-phase approach to first adapt the FSACS Scale items to reflect the experience of men with a history of cancer and then evaluate the psychometric properties of the adapted scale compared to the original FSACS Scale. The study was conducted from December 2018 through April 2022 through cancer clinics, patient registries, and national advocacy organizations. We evaluated scale reliability and validity using reliability coefficients, exploratory and confirmatory factor analyses, and item analyses to determine a final set of scale items. RESULTS: Item responses from N = 171 men with a history of cancer were evaluated to determine scale validity. After removing poor-performing items based on item-level analyses, factor analyses confirmed that a 3-factor structure of both the adapted and original FSACS Scale best fit the scale. The 10 new items did not outperform the original 20-item scale and were therefore excluded from the final scale. The final 20-item scale explained 87.94% of item variance and subscale's Cronbach α varied from 0.65 to 0.86. CONCLUSION: The SACS Scale can be used in research and clinical contexts to assess the propensity of men and women to get their needs, values, and priorities met in the face of a challenge.

Re-attendance in supplemental breast MRI screening rounds of the DENSE trial for women with extremely dense breasts.

OBJECTIVES: Supplemental MRI screening improves early breast cancer detection and reduces interval cancers in women with extremely dense breasts in a cost-effective way. Recently, the European Society of Breast Imaging recommended offering MRI screening to women with extremely dense breasts, but the debate on whether to implement it in breast cancer screening programs is ongoing. Insight into the participant experience and willingness to re-attend is important for this discussion. METHODS: We calculated the re-attendance rates of the second and third MRI screening rounds of the DENSE trial. Moreover, we calculated age-adjusted odds ratios (ORs) to study the association between characteristics and re-attendance. Women who discontinued MRI screening were asked to provide one or more reasons for this. RESULTS: The re-attendance rates were 81.3% (3458/4252) and 85.2% (2693/3160) in the second and third MRI screening round, respectively. A high age (> 65 years), a very low BMI, lower education, not being employed, smoking, and no alcohol consumption were correlated with lower re-attendance rates. Moderate or high levels of pain, discomfort, or anxiety experienced during the previous MRI screening round were correlated with lower re-attendance rates. Finally, a plurality of women mentioned an examination-related inconvenience as a reason to discontinue screening (39.1% and 34.8% in the second and third screening round, respectively). CONCLUSIONS: The willingness of women with dense breasts to re-attend an ongoing MRI screening study is high. However, emphasis should be placed on improving the MRI experience to increase the re-attendance rate if widespread supplemental MRI screening is implemented. CLINICAL RELEVANCE STATEMENT: For many women, MRI is an acceptable screening method, as re-attendance rates were high - even for screening in a clinical trial setting. To further enhance the (re-)attendance rate, one possible approach could be improving the overall MRI experience. KEY POINTS: • The willingness to re-attend in an ongoing MRI screening study is high. • Pain, discomfort, and anxiety in the previous MRI screening round were related to lower re-attendance rates. • Emphasis should be placed on improving MRI experience to increase the re-attendance rate in supplemental MRI screening.

Patient engagement in designing and publishing research in prostate cancer: a scoping review.

Patients with cancer have the unique ability of being able to offer valuable insights into how cancer therapeutics may impact the overall patient experience and improve clinical outcomes. Patient engagement could therefore contribute to tailoring treatment strategies and research design according to patient needs. This study evaluated patient engagement in prostate cancer research by identifying patient input in the prostate cancer literature. We performed a keyword cluster analysis of articles from multiple databases and congresses in which patients provided input on disease management or were involved in study design, manuscript authorship or presentation of results (patient voice). In total, 112 studies were included. Patients were involved in the design of 11 studies and were credited as authors in four studies. This review suggests a lack of meaningful patient involvement in prostate cancer research and publications.

Patients with cancer have first-hand knowledge of what does and does not work for their care. Therefore, their voice is valuable to help improve treatment and guide research. Our goal was to find prostate cancer articles with patient input. We searched databases using keywords related to patient voice. We looked for articles involving patients in designing, writing or presenting the study. Only four out of the 112 articles we identified were published in journals focused on involving patients. Eleven articles involved patients in designing the study. Four articles involved patients in writing the published work. Overall, we did not find many articles where patients had a meaningful role in the study. Prostate cancer treatment and research will likely benefit from more patient input.

Reasons for non-participation in cancer rehabilitation: a scoping literature review.

BACKGROUND: Rehabilitation plays an important role in addressing the many challenges of living with cancer, but a large proportion of people with cancer do not participate in available cancer rehabilitation. Hence, reasons for non-participation in cancer rehabilitation need to be explored. OBJECTIVE: The present study undertakes a scoping review of research examining reasons for non-participation in cancer rehabilitation among people with cancer. DESIGN: A systematic search was conducted in PubMed, Scopus and CINAHL for articles published until July 2023. Included studies were hand searched for relevant references and citations. ELIGIBILITY CRITERIA: Method: Studies with qualitative, quantitative or mixed-method design. POPULATION: Studies targeting adults (> 18) living with cancer, not participating in rehabilitation. Program type: The review included all studies defining program as rehabilitation but excluded clinical trials. OUTCOME: Studies examining reasons for non-participation in available rehabilitation. DATA EXTRACTION: The extracted data included author(s)/year of publication, aim, population, information, rehabilitation type and main reasons for non-participation. RESULTS: A total of nine studies were included (n = 3 quantitative, n = 2 qualitative, n = 4 mixed methods). Reasons for non-participation included physical, psychosocial and practical aspects. The main reason across studies was 'no need for public support' related to receiving sufficient support from family and friends. All studies focused on individual reasons, and structural conditions were rarely present. CONCLUSION: Research within this field is sparse. Future research should explore how individual reasons for non-participation relate to structural conditions, especially among people in socially disadvantaged positions living with cancer.

What influences trust in and understanding of clinical trials? An analysis of information and communication technology use and online health behavior from the Health Information National Trends Survey.

BACKGROUND: Using information and communication technologies to seek, discuss, and share health-related information influences people's trust and knowledge of several health practices. However, we know little about the associations between individuals' information and communication technology use and their perceptions of trust and knowledge of clinical trials. Examining these associations may lead to the identification of target audiences and channels for developing effective educational interventions and campaigns about clinical trials. METHODS: In this study, we analyzed Health Information National Trends Survey data to document perceptions of clinical trial-related knowledge and trust that were recently added as questions in this annual national survey of US adults. We also examined correlates of these clinical trial perceptions that included sociodemographic factors and individuals' use of information and communication technologies to seek health information, discuss such information with their healthcare providers, and share the information in their network. RESULTS: More than 90% of participants had no or limited perceived knowledge about clinical trials. Knowledge was higher among those who seek or discuss health-related information online. Differences in perceived knowledge and trust emerged for some racial/ethnic subgroups and other demographic factors. Providers were considered the most trusted source of information (73.6%), followed by health organizations (19.4%) and social support (7.1%). Trust in health organizations compared to health providers was higher among those who used online resources to share health information online with others. Trust in social support was significantly higher among those who used information and communication technologies to communicate about health. CONCLUSION: Based on these findings, we recommend developing online resources about clinical trials to be distributed through social media. These resources should facilitate a dialogue and be targeted to several groups considering their information and communication technologies' use.

Psychiatrists' perceptions of conditions and consequences associated with the implementation of open notes: qualitative investigation.

OBJECTIVE: In a growing list of countries, patients are granted access to their clinical notes ("open notes") as part of their online record access. Especially in the field of mental health, open notes remain controversial with some clinicians perceiving open notes as a tool for improving therapeutic outcomes by increasing patient involvement, while others fear that patients might experience psychological distress and perceived stigmatization, particularly when reading clinicians' notes. More research is needed to optimize the benefits and mitigate the risks. METHODS: Using a qualitative research design, we conducted semi-structured interviews with psychiatrists practicing in Germany, to explore what conditions they believe need to be in place to ensure successful implementation of open notes in psychiatric practice as well as expected subsequent changes to their workload and treatment outcomes. Data were analyzed using thematic analysis. RESULTS: We interviewed 18 psychiatrists; interviewees believed four key conditions needed to be in place prior to implementation of open notes including careful consideration of (1) diagnoses and symptom severity, (2) the availability of additional time for writing clinical notes and discussing them with patients, (3) available resources and system compatibility, and (4) legal and data protection aspects. As a result of introducing open notes, interviewees expected changes in documentation, treatment processes, and doctor-physician interaction. While open notes were expected to improve transparency and trust, participants anticipated negative unintended consequences including the risk of deteriorating therapeutic relationships due to note access-related misunderstandings and conflicts. CONCLUSION: Psychiatrists practiced in Germany where open notes have not yet been established as part of the healthcare data infrastructure. Interviewees were supportive of open notes but had some reservations. They found open notes to be generally beneficial but anticipated effects to vary depending on patient characteristics. Clear guidelines for managing access, time constraints, usability, and privacy are crucial. Open notes were perceived to increase transparency and patient involvement but were also believed to raise issues of stigmatization and conflicts.

Development of the TIFFIN recommendations for co-producing palliative and end-of-life care research with individuals with lived experience of homelessness: A qualitative study.

BACKGROUND: Palliative care for people experiencing homelessness is a complex field. Due to the intricate nuances and heterogeneity in the experience of palliative care for people without secure housing, it is essential that research is informed by people with lived experience of homelessness. However, as homelessness is often associated with loss, trauma and high levels of exposure to death, any co-production of research, particularly in the field of palliative and end-of-life-care, must be trauma-informed. AIM: To produce recommendations for co-producing palliative and end-of-life-care research with people with lived experience of homelessness. DESIGN: A qualitative study comprising semi-structured interviews and focus groups. Data were analysed using iterative, reflexive thematic analysis. SETTING/PARTICIPANTS: Twenty-seven participants were recruited. Sixteen professionals with experience of co-producing research with people with lived experience of homelessness; eleven people with lived experience of homelessness. RESULTS: Six key themes were developed: transparency, importance of engagement and rapport, facilitating equitable involvement via person centred approach, financial recognition of involvement, involvement and growth through a trauma-informed approach and navigating institutional resistance and attitudes. Recommendations corresponding to the core themes were developed (TIFFIN recommendations). CONCLUSIONS: Co-production of palliative care research with people with lived experience of homelessness is essential, but must be done carefully and sensitively. As a population with high levels of premature morbidity and mortality yet low access to palliative care, the TIFFIN recommendations could help to support the involvement of people with lived experience of homelessness in palliative and end-of-life-care care research.

Giving patients a voice for healthcare reform in Austria: the qualitative voice-study.

BACKGROUND: Inclusion of patients in healthcare service and system planning is an increasingly important tool to improve healthcare systems worldwide. In 2012, a focused healthcare reform was initiated in Austria to strengthen the primary care sector which is still underway in 2023. OBJECTIVE: The aim of this study was to assess the perceptions, desires, and needs of patients in terms of primary care as a necessary building block of the Austrian healthcare reform. METHODS: This study was designed as an exploratory qualitative study using semi-structured interviews between the years 2013 and 2018. Interviews with patients focused on positive and negative experiences with regard to general practice (GP) consultations and perceptions of the primary care system in general, as well as desires for improvement. Qualitative content analysis was used to analyse the material using the software atlas.ti. RESULTS: Altogether, 41 interviews were conducted with seven categories identified. These categories include organization and time management around consultation, access, and availability including opening hours, human and professional aspects of consultation, infrastructure and hygiene of the waiting room, healthcare system factors, as well as non-clinical/administrative staff. CONCLUSIONS: Appreciating and responding to patients' perceptions and needs, healthcare reform in Austria should include improvements regarding consultation/waiting time, coordination, and navigation in Primary Care. Successful healthcare reform has to include the patient voice.

Female Enrollment in Rehabilitation Trials: A Systematic Review of Reporting Sex and Female Participation in Randomized Controlled Trials of Poststroke Upper Extremity Rehabilitation Over 50 Years.

OBJECTIVE: To systematically assess the reporting of sex and the percentage of female participants in randomized controlled trials (RCTs) examining interventions for the post-stroke rehabilitation of upper extremity (UE) motor disorders. DATA SOURCES: CINAHL, Embase, PubMed, Scopus and Web of Science were searched from 1960 to April 1, 2021. Additional articles were identified using the Evidence-Based Review of Stroke Rehabilitation. STUDY SELECTION: Studies were eligible for inclusion if they (1) were RCTs or crossovers published in English, (2) ≥50% of participants were diagnosed and affected by stroke, (3) included adults ≥18 years old, and (4) applied an intervention to the hemiparetic UE as the primary objective of the study. DATA EXTRACTION: Two investigators independently screened the title and abstracts, and duplicates were removed. A full-text review was done for studies that met all inclusion criteria. Data were extracted using a custom data extraction template in Covidence and were transferred to online Excel (V16) for data management. Study characteristics and extracted variables were summarized using standard descriptive statistics. Data analyses were performed using SPSS (V29.0). DATA SYNTHESIS: A total of 1276 RCTs met inclusion criteria, and of these, 5.2% did not report results on sex, accounting for 5.6% of participants. Women have been underrepresented in stroke RCTs, accounting for 38.8% of participants. Female participation was greater in the acute poststroke phase than in the chronic and subacute phases. Over almost 5 decades, there has been a small decrease in the proportion of female participants in these trials. CONCLUSIONS: Evidence-based medicine for the treatment and prevention of stroke is guided by results from RCTs. Generalizability depends on sufficient representation in clinical trials. Stakeholders, such as funders and journal editors, play a key role in encouraging researchers to enroll enough of both sexes and to report the presence or absence of sex differences in RCTs.

Patients' perspectives on their motivations for participating in non-clinical medical teaching and what they gain from their experience: a qualitative study informed by critical theory.

In 2019-2021, we engaged in a project aimed at developing, implementing, and evaluating an educational intervention actively involving patient-teachers in undergraduate medical education at Université Laval, Quebec, Canada. Patient-teachers were invited to participate in small group discussion workshops during which medical students deliberate on legal, ethical, and moral issues arising from medical practice. Patients were expected to bring other perspectives, based on their experience with illness and the healthcare system. Little is still known about patients' perspectives on their participation experience in such context. Informed by critical theory, our qualitative study aims to document,: (i) the motivating factors for patients' participation in our intervention; and (ii) what patients gained from the experience. Data collection was based on 10 semi-structured interviews with patient-teachers. A thematic analysis was conducted using NVivo software. Motivators for participation arose from: (i) perceived consistency between patients' individual characteristics and those of the project, and (ii) conceiving the project as a means to reach individual and social goals. What patients gained mainly refers to (1) the appreciation of a positive, enriching, motivating yet uncomfortable and destabilizing experience; (2) a deconstruction of biases against the medical field and critical thinking about their own experience; (3) new knowledge, with a potential impact on their future interactions with the healthcare system. Results reveal patients as non-neutral thinking and knowing subjects, engaged in the participation experience as active teachers and learners. They also highlight the empowering and emancipatory nature of the learning gained through patients' participation experience. These conclusions prompt us to promote transformative interventional approaches that question the pervasive power issues in medical teaching and value patients' specific knowledge in teaching and learning the Art of Medicine.

Rationalizing the Influence of Co-Design on Distress, Clinical Decision-Making and Disease Self-Management of Cancer Patients-as-Partners: A Quasi-Experimental Study.

INTRODUCTION: Cancer is regarded as a major worldwide burden. Patient distress has been linked to disease progression. Studies show that engagement strategies affect clinical decision-making and patient outcomes. The optimal engagement method is a partnership that integrates the patient's expertise into the comprehensive co-design of the healthcare system. OBJECTIVES: This is the first study to investigate cancer patient-as-partner experience and its impact on distress levels, decision-making and self-management. METHODS: It is a quantitative and quasi-experimental study that adopted a partnership committee at a Lebanese hospital. A stratified random sampling approach was used, and data were collected by self-administered questionnaires. We utilized the standardized distress thermometer and PPEET. RESULTS: We recruited 100 patient partners. Cancer patients-as-partners had optimal engagement experience in QI projects (mean = 4; SD = 0.4). The main partnership benefit was improved hospitalization experience (49%). Almost half of PP reported no challenges faced (49%). Recommendations for improvement were training (19%), team dynamics management (12%) and proper time allocation (7%). The distress level post-partnership was significantly reduced (t = 12.57, p < 0.0001). This study highlights the importance of partnership and its ability to influence shared decision-making preference [χ2(2) = 13.81, p = 0.025] and self-management practices [F(3, 11.87) = 7.294, p = 0.005]. CONCLUSION: Research findings suggest that partners from disadvantaged groups can have optimal partnership experience. A partnership model of care can shape the healthcare system into a people-oriented culture. Further research is needed to explore diverse PP engagement methodologies and their effect on organizational development. PATIENT OR PUBLIC CONTRIBUTION: Patients and family members were engaged in the co-design of the study methodology, especially the modification of a research instrument. Patient partners with lived experience were involved in the patient partnership committee as core members to improve healthcare system design and evaluation.

Involvement of children and young people in the conduct of health research: A rapid umbrella review.

BACKGROUND: Patient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in research. AIMS: This rapid umbrella review aimed to provide an overview of when, how and to what extent CYP are involved in the conduct of health research, as well as the reported benefits, challenges, and facilitators of involvement. METHODS: We searched OVID Medline, Embase and PubMed. Published reviews were included if they reported meaningful involvement of CYP in the conduct of health research. Extracted data were synthesised using thematic analysis. RESULTS: The 26 reviews included were predominately systematic and scoping reviews, published within the last decade, and originating from North America and the United Kingdom. CYPs were involved in all stages of research across the literature, most commonly during research design and data collection, and rarely during research funding or data sharing and access. Researchers mostly engaged CYP using focus groups, interviews, advisory panels, questionnaires, and to a lesser extent arts-based approaches such as photovoice and drawing. Visual and active creative methods were more commonly used with children ≤12 years. The evidence showed a shared understanding of the benefits, challenges, and facilitators for involvement of CYP, such as time and resource commitment and building partnership. CONCLUSION: Overall, the review identified consistency in the range of methods and approaches used, and stages of research with which CYP are commonly involved. There is a need for more consistent reporting of PPIE in the literature, both in terminology and detail used. Furthermore, the impact of approaches to CYP involvement on research and community outcomes must be better evaluated. PATIENT/PUBLIC CONTRIBUTION: This review forms part of broader research initiatives being led by the authors. Together, these projects aim to support embedding of child voices in research practice and to explore the desirability and suitability of Young Persons Advisory Groups within birth cohort studies. The findings from this review, alongside public and stakeholder consultation, will inform development of resources such as practice recommendations to guide future involvement of CYP in health research undertaken at the author's respective institutions.

An educative nutritional intervention supporting older hospital patients to eat sufficiently using eHealth: a mixed methods feasibility and pilot study.

BACKGROUND: Insufficient food intake is common in older hospital patients and increases the risk of readmission, mortality, and decline in functional status. To improve food intake in older patients, an eHealth solution (Food'n'Go) enabling them to participate in their own nutritional care was implemented in a hospital unit. We developed an educative nutritional intervention (ENI) to support hospitalized older adults (aged ≥ 65 years) to participate in their own nutritional care using Food'n'Go. In this study, we evaluate the feasibility of the ENI and its potential to improve nutritional intake. METHODS: Feasibility was evaluated using process evaluation, and nutritional intake was examined by using a pre- and post-test design. Assessment of feasibility: Contextual factors (availability of Food'n'Go and prevalence of counseling by a dietitian); Intervention fidelity (whether patients were informed of nutrition and Food'n'Go, and whether their needs for support were assessed); and Mechanism of impact (patients' knowledge and skills related to nutrition and the use of Food'n'Go and their acceptance of the ENI). Assessment of nutritional intake: Patients' intake of protein and energy based on one-day observations before implementation of the ENI (pre-test; n = 65) and after a three-month intervention (post-test; n = 65). RESULTS: Feasibility: Food'n'Go was available for more patients after the intervention (85 vs. 64%, p = .004). Most patients managed the use of Food'n'Go and were involved in ordering their food, but only a few monitored their food intake. Information on nutrition was not provided sufficiently to all patients. In general, the ENI had high acceptability among the patients. Nutritional intake: Compared to patients in the pre-test, patients in the post-test had a higher daily mean intake of energy (kJ) (6712 (SD: 2964) vs. 5660 (SD: 2432); difference 1052 (95% CI 111-1993)), and of protein (g) (60 (SD: 28) vs. 43 (SD: 19); difference 17 (95% CI 9-26)). Likewise, there was an increase in the mean attainment of protein requirements: 73% (SD: 34) vs. 59% (SD: 29) (p = .013). CONCLUSION: The ENI is feasible for supporting hospitalized older adults to participate in their own nutrition using eHealth and preliminary results indicate that it may lead to an increasing energy and protein intake.

Patient and public involvement in the development of the digital tool MyBoT to support communication between young people with a chronic condition and care providers.

INTRODUCTION: To guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment). METHODS: MyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers. In addition to the two co-researchers in the research team, various groups of YPCC were involved in decision-making through participation in a design session, workshops and a dialogue session. The Involvement Matrix was used to reflect on the PPI of all YPCC. RESULTS: Initially, the two co-researchers were involved in the roles of informer and co-thinker, but their decision-making power within the study increased over time. In the final stages of the study, the co-researchers and researchers became partners. The other YPCC who participated in the different sessions and workshops were co-thinkers in all stages of the study. CONCLUSION: The PPI of two YPCCs as co-researchers within the research team ensured continuous involvement, whereas the PPI of various groups of YPCCs guaranteed a representative and inclusive approach. Researchers play an essential role in bringing all perspectives together, integrating them within the technical and financial constraints and ultimately building a tool that is tailored to its users' needs. PATIENT OR PUBLIC CONTRIBUTION: YPCC played a significant role in the present study. Two YPCC-who are also co-authors of this paper-were involved in all stages of this project as members of the research team. In addition, various YPCCs were involved in the development, testing and implementation stage of MyBoT by organizing design sessions, workshops and a dialogue session.

Climate-sensitive health counselling in Germany: a cross-sectional study about previous participation and preferences in the general public.

BACKGROUND: In response to climate change (CC), medicine needs to consider new aspects in health counselling of patients. Such climate-sensitive health counselling (CSHC) may include counselling patients on preventing and coping with climate-sensitive diseases or on leading healthy and climate-friendly lifestyles. This study aimed to identify previous participation in and preferences for CSHC as well as associated sociodemographic and attitudinal factors among the general public in Germany. METHODS: We conducted a cross-sectional study in a population-based online panel in five German federal states (04-06/2022). We performed descriptive statistics and multivariable regression analysis to assess prior participation in CSHC and content preferences regarding CSHC, as well as associations between sociodemographic variables and general preference for CSHC. RESULTS: Among 1491 participants (response rate 47.1%), 8.7% explicitly reported having participated in CSHC, while 39.9% had discussed at least one CSHC-related topic with physicians. In the studied sample, 46.7% of participants would like CSHC to be part of the consultation with their physician, while 33.9% rejected this idea. Participants aged 21 to 40 years (versus 51 to 60), individuals alarmed about CC (versus concerned/cautious/disengaged/doubtful/dismissive), and those politically oriented to the left (vs. centre or right) showed greater preference for CSHC in the multivariable regression model. Most participants wanted to talk about links to their personal health (65.1%) as opposed to links to the health of all people (33.2%). CONCLUSIONS: Almost half of the participants in this sample would like to receive CSHC, especially those who are younger, more alarmed about CC and more politically oriented to the left. More research and training on patient-centred implementation of CSHC is needed.

Patient activation levels and socioeconomic factors among the Amazonas population with diabetes: a cross-sectional study.

BACKGROUND: The presence of chronic conditions such as type 2 diabetes mellitus (T2DM) requires behavioral lifestyle changes mediated by individuals' motivation for change and adherence to treatment. This study aims to explore activation levels in individuals with T2DM treated in primary care facilities and to identify the association between demographic, clinical, psychosocial factors, and patient activation amongst populations in the Brazilian state of Amazonas. METHODS: SAPPA is a cross-sectional study conducted in Amazonas, approved by the Universidade Federal do Amazona's IRB in Brazil. Individuals with T2DM were evaluated in their homes (n = 4,318,325). The variables were sex, age, skin color, education level; health-related variables such as body mass index, nutritional behavior, and frequency of physical activity. Measures related to patient self-management behaviors over the past 6 months (Patient Activation Measure - PAM-13) were included in the survey. Descriptive and frequency data are presented as mean (standard deviation (SD)) or numeric percentage). Statistical testing was performed using IBM SPSS V.26, and a p-value of < 0.050 showed significance. Activation levels were dichotomized into low activation (Levels 1 and 2) and high activation (Levels 3 and 4). A multivariate linear model assessed the association between the PAM-13 score and the following variables: age, sex, BMI, skin color, number of comorbidities, burden of symptoms, and number of medications. RESULTS: Logistic regression analyses indicated a statistically significant association between sex, age, education, self-rated health, and general satisfaction with life. men were 43% more likely to score lower levels (p < 0.001). The results also indicated that advanced age had lower PAM levels (p < 0.001). Participants with fewer years of education were 44% more likely to have lower levels of PAM (p = 0.03). Worse self-rated health (p < 0.001) and lower general life satisfaction (p = 0.014) were associated with lower PAM levels. CONCLUSIONS: Low patient activation was associated with worse sociodemographic, health, and psychological conditions in the Amazon population. The low level of patient activation observed in this sample highlights an important impediment to diabetes disease management/self-management in disadvantaged populations.

Systematic review on the frequency and quality of reporting patient and public involvement in patient safety research.

BACKGROUND: In recent years, patient and public involvement (PPI) in research has significantly increased; however, the reporting of PPI remains poor. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was developed to enhance the quality and consistency of PPI reporting. The objective of this systematic review is to identify the frequency and quality of PPI reporting in patient safety (PS) research using the GRIPP2 checklist. METHODS: Searches were performed in Ovid MEDLINE, EMBASE, PsycINFO, and CINAHL from 2018 to December, 2023. Studies on PPI in PS research were included. We included empirical qualitative, quantitative, mixed methods, and case studies. Only articles published in peer-reviewed journals in English were included. The quality of PPI reporting was assessed using the short form of the (GRIPP2-SF) checklist. RESULTS: A total of 8561 studies were retrieved from database searches, updates, and reference checks, of which 82 met the eligibility criteria and were included in this review. Major PS topics were related to medication safety, general PS, and fall prevention. Patient representatives, advocates, patient advisory groups, patients, service users, and health consumers were the most involved. The main involvement across the studies was in commenting on or developing research materials. Only 6.1% (n = 5) of the studies reported PPI as per the GRIPP2 checklist. Regarding the quality of reporting following the GRIPP2-SF criteria, our findings show sub-optimal reporting mainly due to failures in: critically reflecting on PPI in the study; reporting the aim of PPI in the study; and reporting the extent to which PPI influenced the study overall. CONCLUSIONS: Our review shows a low frequency of PPI reporting in PS research using the GRIPP2 checklist. Furthermore, it reveals a sub-optimal quality in PPI reporting following GRIPP2-SF items. Researchers, funders, publishers, and journals need to promote consistent and transparent PPI reporting following internationally developed reporting guidelines such as the GRIPP2. Evidence-based guidelines for reporting PPI should be encouraged and supported as it helps future researchers to plan and report PPI more effectively. TRIAL REGISTRATION: The review protocol is registered with PROSPERO (CRD42023450715).