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As transplant programmes have evolved to allow a wider donor pool, organ acceptance decisions have become increasingly complex and lack transparency and equality. Clinical scoring tools exist but there is limited consensus on their use. From a prospective observation of consecutive deceased-donor kidney offers in a large urban transplant centre, a simple score was developed based on donor age and other risk characteristics, excluding ischemia time and graft histology. The score was validated in subsequent cohorts of consecutive offers in the United Kingdom and Germany. In the development cohort of 389 kidney offers, 110 (28%) were transplanted and 175 (45%) declined. Nine risk factors were incorporated into a score based on age, but adjusted for the number of risk factors present, making an "adjusted donor age," with offers separated into equal quintiles by decade. The score was validated in a UK cohort of 380 subsequent offers, and a German cohort of 431 offers. In both cohorts adjusted donor age discriminated between favourable and poor post-transplant outcomes (C-statistic 0.77 in the United Kingdom, 95% CI 0.65–0.88, and 0.71 in Germany, 95% CI 0.64–0.77). Adjusted donor age is a simple score quantifying deceased donor kidney quality, which is consistent with current practice and predicts post-transplant outcome. [ABSTRACT FROM AUTHOR]

Purpose: Onco-nephrology is an emerging subspecialty aiming to better understand and prevent renal events in cancer patients. We assessed patients’ knowledge about (1) oncological/hematological treatments induced renal toxicity and (2) kidney protective measures. Methods: Adult patients receiving systemic anti-tumor treatments in multiple day hospital units in France answered a self-administered questionnaire about their knowledge and expectations related to treatment-associated renal toxicity. Results: In total, 621 questionnaires were collected in 8 units from November 2021 to January 2022. Among respondents, 84.5% were treated for a solid tumor. Overall, 34.3% (n = 208) patients reported they had some knowledge about potential renal adverse events related to their anticancer treatment, and 38.5% (n = 234) about kidney protection measures. Their referring oncologist or hematologist represented the commonest source of knowledge (67.8%). Sufficient hydration was cited as a kidney protection measure by 93.2% (n = 218) of patients declaring some knowledge about renal toxicity; prevention of nausea/vomiting by 52.6% (n = 123). Consumption of still and alkaline water was chosen by respectively 64.4% (n = 400) and 16.8% (n = 104) of participants to correct dehydration. A majority of patients expressed strong interest for receiving more information about renal toxicity and prevention: median Likert scale score was 10/10 (Q1–Q3, 5–10), with online resources mentioned as the most desired source of information. Conclusion: One-third of patients declared they had some knowledge about potential renal toxicity of their oncologic treatment and the ways to prevent them, especially regarding hydration. However, a majority expressed interest for dedicated information, which conducted to the elaboration of free online educational sheets for patients. [ABSTRACT FROM AUTHOR]

Purpose: Chemotherapy-induced neutropenia poses a significant risk to cancer patients, with pegfilgrastim being commonly used for its prevention. While pegfilgrastim can be administered via prefilled syringe or pen device, patient preferences and experiences with these delivery methods remain unclear. Methods: We conducted a prospective, open-label, randomized, observational trial (NCT05910164) at the Rafael Institute, France, comparing patient preferences for pegfilgrastim administration using a prefilled syringe versus a prefilled pen device. Patients undergoing chemotherapy and requiring pegfilgrastim were enrolled and randomized 1:1 to receive either syringe or pen first, with crossover administration. Questionnaires assessed patient preferences, learning experiences, autonomy, pain levels, emotional responses, satisfaction with nursing care, and empowerment. Results: Among 150 randomized patients (mean age 58 years; 69% female), both groups showed a preference for the pen device, with significantly higher mean scores favoring pen administration (4.94 ± 1.70 vs. 4.27 ± 1.84; p = 0.00106). Patients reported significantly lower perceived pain with pen administration and stronger positive emotions compared to syringe use. Satisfaction with nursing care was higher with syringe use. Empowerment levels were similar across groups but significantly stronger when using the pen in complete autonomy. Conclusion: A preference for pegfilgrastim administration via the pen device was observed, though this may have been influenced by the administration sequence and the absence of syringe self-administration. The insights gained can help inform clinical decision-making and improve patient-centered care in managing chemotherapy-induced neutropenia. Trial registration: NCT05910164 on June 15, 2023. [ABSTRACT FROM AUTHOR]

Background: The implementation of ERAS represents a promising solution to improve treatment efficiency and facilitate patient involvement. This innovative care model aims to optimize recovery processes following surgeries by adopting a holistic, interprofessional approach. At our hospital, ERAS was implemented in minimally invasive heart valve surgery, offering two distinct ERAS models. Additionally, there is also the standard of care without ERAS. The objective of the study is to gain insight into patient satisfaction and perceived differences across these various care models. Methods: Patients were interviewed using semi-structured interviews approximately two to three months after undergoing surgery. The data were analysed using qualitative content analysis in accordance with the methodology proposed by Kuckartz. Four main categories were established: Preoperative care, postoperative care and communication, patient participation and involvement, and rehabilitation and post-clinical course. Results: Comprehensive preoperative education and seamless communication throughout the perioperative care journey were identified as fundamental to patient satisfaction and optimal care processes. Patients in the ERAS + model reported higher overall satisfaction with their care compared to patients in the standard of care and ERAS groups. Conclusion: Preoperative education establishes the foundation for patients' subsequent behaviours and expectations regarding their treatment. Physical activity, nutrition, and mental health are significant aspects. The active involvement and participation of patients and their families in the treatment process facilitated superior postoperative care, intensive physiotherapy, mental support, and faster recovery. A functional flow of information throughout the entire care process is vital. Moreover, having a dedicated point of contact had a beneficial impact on patients´ well-being. The integration of innovative ERAS concepts, which encompass interprofessional preoperative patient education and psychosomatic support, represents a promising approach from a patient perspective, offering benefits to a broad spectrum of cardiac surgical patients. [ABSTRACT FROM AUTHOR]

Background/Objectives: Empowerment in medicine and psychiatry involves patients gaining control over health-related decisions, improving treatment adherence, outcomes, and satisfaction. This concept is especially significant in psychiatric care due to the complex challenges of mental health conditions, including stigma and impairment of emotional and cognitive functioning. We aim to investigate the correlations between patient trust, decision-making involvement, symptom severity, and perceived empowerment among individuals with Major Depression. Methods: Patients with Major Depressive Disorder were recruited in the "Policlinico G. Rodolico" psychiatry outpatient clinic from November 2022 to June 2023. Inclusion criteria: ages 18–65, ability to consent, stable condition, psychiatric medication history, and recent consultation. Exclusion criteria: psychotic features, bipolar disorder, substance abuse, high suicide risk, and severe comorbidities. Measures included the User Scale for Measuring Empowerment in Mental Health Services (SESM), Trust in Oncologist Scale (TiOS), Clinical Decision-Making Style for Patients (CDMS-P), and Hamilton Depression Rating Scale (HAM-D). Analysis used Kendall's Tau correlation and Two-One-Sided Tests procedure. Results: Seventy-three patients completed the study. No relationship was found between decision-making involvement and perceived empowerment (τ = −0.0625; p = 0.448), or between trust in psychiatrists and empowerment (τ = 0.0747; p = 0.364). An inverse correlation existed between patient involvement in therapy management and trust (τ = −0.2505; p = 0.002). Depression severity inversely correlated with empowerment (τ = −0.2762; p = <.001), but not with trust or decision-making involvement. Conclusions: The lack of significant correlations suggests that decision-making involvement and trust alone may not suffice to enhance empowerment. Trust may encourage patient passivity, while skepticism might drive active involvement. Higher empowerment is associated with less depressive symptoms, highlighting its potential connection with patient outcomes. [ABSTRACT FROM AUTHOR]

The aim of this study was to assess whether the involvement of major salivary and lacrimal glands in primary Sjögren's syndrome (pSS) affected the psychological resilience of patients. This cross‐sectional study included 116 patients with pSS. Data were collected through clinical examinations, measurement of salivary flow rates (SFRs), and from Schirmer's test, as well as from patient‐reported outcome measures (PROMs), such as the European League Against Rheumatism (EULAR) Sjögren's Syndrome Patient Reported Index (ESSPRI), Brief Resilience Scale (BRS), Work Productivity and Activity Impairment (WPAI), Oral Health Impact Profile‐14 (OHIP‐14), and the Hospital Anxiety and Depression Scale (HADS). Hyposalivation was defined as an unstimulated SFR of ≤0.1 mL/min. The BRS score (mean ± SD = 2.60 ± 0.69) was lower in patients with recurrent parotitis (2.11 ± 0.37) than in those without recurrent parotitis (2.67 ± 0.86), in the whole group. In patients with an unacceptable symptom state (ESSPRI score ≥ 5 points), a lower BRS score was observed in patients with both hyposalivation and ocular dryness (2.59 ± 0.69) than in patients with isolated hyposalivation (2.84 ± 0.84). The BRS score was also negatively associated with the WPAI‐Daily Impairment and OHIP‐14 scores in patients with hyposalivation as well as with HADS‐A (the seven items of HADS relating to the anxiety dimension) and HADS‐D (the seven items of HADS relating to the depression dimension) in the whole group. The results suggest that psychological resilience in pSS may be affected by recurrent parotitis, the levels of anxiety and depression, as well as hyposalivation with ocular dryness. [ABSTRACT FROM AUTHOR]

Background: The use of Cloud-based storage of personal health records has increased globally. The GPOC Series introduces the concept of a Global Patient co-Owned Cloud (GPOC) of personal health records. Here, we present the GPOC Series' international survey on the necessity of a GPOC. Methods: Online global survey with invitations sent to health ministries and major organisations. It received answers from health ministries and affiliated advisors of all 193 United Nations (UN) member states, 2 UN observer states (Holy See & Palestine) and 1 de facto UN non-member state (Taiwan) and from 18 major international organisations. The survey examined a dozen aspects encompassing demographics, privacy, sharing, movability, co-ownership, research, company usage, regulation and the necessity of a GPOC. Results: The GPOC Survey elicited responses from 267 individuals from 214 entities, including all UN member states, and major international organisations. Twelve domains were identified, covering demographics, correctness, privacy, commercial use, medical and non-medical research, co-ownership, data sharing, record movement, ownership centralisation, patient rights, environmental concerns, and foundation creation. Results show high agreement on most issues, including support for co-ownership (89%) and movement of personal health records (84%). Disagreement was prominent regarding centralised ownership by the state (64%) and data sharing without consent (85%). Additionally, respondents expressed interest in a neutral, decentralised foundation for regulation (73%) and the environmental sustainability of electronic health records (84%). Conclusions: A Global Patient co-Owned Cloud (GPOC) of personal health records could significantly enhance patient independence and involvement in health management, supported by the near consensus agreement across various domains identified in our survey. This consensus underscores the potential of GPOC to democratise healthcare and align with UN Sustainable Development Goals (SDGs). The survey results demonstrate strong support for GPOC's role in promoting evidence-based patient management, reducing information silos, and fostering ethical data sharing. Moreover, the overwhelming agreement on key principles of co-ownership, data sharing, and environmental sustainability highlights the global inclination for a decentralised, patient-controlled PHR platform. This platform stands to empower patients worldwide, advance precision medicine, and contribute to the global development and dissemination of artificial intelligence in healthcare. [ABSTRACT FROM AUTHOR]

Guidelines and consensus in cardiovascular care in recent years have called for patients to be more involved in their care, which can be achieved by becoming more empowered. Yet, there is little clarity on how healthcare professionals can help the patients achieve this goal. The present paper defines patient empowerment, its benefits, and the different strategies that can be used in healthcare to empower them. Moreover, potential barriers in the empowering process are also discussed. [ABSTRACT FROM AUTHOR]

Purpose: Shared decision‐making (SDM) is crucial in pancreatic cancer treatment due to its choice‐sensitive nature and limited prognosis. Treatment of pancreatic cancer is organized in a network approach. Several obstacles exist on different levels—patient, healthcare professional, organizational, societal—that impede integration of SDM. This study aims to identify barriers and facilitators to SDM implementation within a comprehensive cancer network. Methods: A qualitative research design was applied, involving interviews and focus groups on barriers and facilitators with healthcare professionals involved in the implementation of SDM. In one comprehensive cancer network in the Netherlands, including seven hospitals, a project was initiated with the goal of empowering patients and healthcare professionals in SDM throughout primary, secondary and tertiary healthcare settings. A total of 17 participants were assessed. Directed qualitative content analysis was performed by two researchers. Results: Main findings revealed barriers such as time constraints, lack of priority of physicians, little involvement of general practitioners, and insufficient social context of patients in referrals, alongside facilitators including learning communities with practical SDM examples, metro mapping, involvement of case manager in implementation and patient empowerment strategies. Conclusion: Addressing cultural, systemic barriers and developing innovative strategies are of importance to enhance SDM in pancreatic cancer treatment in a network approach. This study provides understanding of SDM implementation in complex healthcare settings and offers valuable guidance for future interventions seeking to improve decision‐making processes in pancreatic cancer treatment and beyond. [ABSTRACT FROM AUTHOR]

Background: Patient Assessment of Care in Chronic Conditions (PACIC+), included in some Australian guidelines, has been shown reliable for measuring patient engagement and perception of their care in primary care settings. Various studies have focussed on PACIC+ use in specific conditions. This study aims to expand PACIC+ to measure patient empowerment to self-manage their chronic condition and validate it in the broader Australian primary care population. This study aims to evaluate internal consistency and reliability of PACIC+ and six new supplementary items proposed to assess patient wellbeing and empowerment to self-manage their chronic condition. Methods: A repeated-measures correlation design study assessed the expanded PACIC+ over three time-points. Particpants were patients with at least one chronic disease, referred by consultant physician, or recruited by advertisement posters in hospital clinic areas. Results: PACIC+ (26-item) had acceptable internal consitency (Cronbach's alpha 0.96). Test–retest reliability (Time-1 and 2, P < 0.01) was acceptable: Total score r (48) = 0.43; and New supplementary items: Confidence r (48) = 0.54; Understanding r (48) = 0.62; Support r (48) = 0.43; Overall Health r (48) = 0.42; Overall Health Change r (48) = −0.31, P = 0.03; and Acute Episodes of Care in 1-month r (48) = 0.42, P < 0.01. Four factors from the original PACIC+ accounted for 66.5% of the variance. Conclusions: The expanded PACIC+ is an improved psychometric tool providing for the patient's voice in a shared health journey. It is a valid, reliable tool to monitor and measure self-management of chronic conditions in Australian population clinic and primary healthcare settings. Six new supplementary patient empowerment and health status measures proved reliable and, in combination with the PACIC+ psychometric tool, could offer a method to monitor and measure the self-management of chronic conditions in the Australian clinic setting and for future research. [ABSTRACT FROM AUTHOR]

Simple Summary: Cancer patients frequently encounter significant emotional and psychological challenges that can adversely affect their overall well-being and treatment outcomes. To address these challenges, we developed the Cancer Patient Empowerment Program (CancerPEP), a comprehensive, home-based intervention that incorporates physical exercise, nutritional guidance, and social support. CancerPEP builds on the success of the Prostate Cancer Patient Empowerment Program (PC-PEP), which has demonstrated positive effects on psychological well-being in prostate cancer patients. In this study, we also evaluated whether adding a Heart Rate Variability (HRV) biofeedback device could enhance the effectiveness of CancerPEP. Our findings indicate that while CancerPEP significantly reduced psychological distress and improved emotional well-being across cancer patients—including a breast cancer subgroup—at the end of the intervention (the 6-month point), the addition or lack of an HRV device did not significantly contribute to these improvements for the full sample. These results suggest that CancerPEP, similar to PC-PEP, is a valuable addition to standard cancer care, providing a holistic approach to support patients both mentally and emotionally. However, the inclusion of the HRV device may not be necessary to achieve these benefits. Background/Objectives: Psychological distress is a significant concern among cancer patients, negatively affecting their quality of life and adherence to treatment. The Cancer Patient Empowerment Program (CancerPEP) was developed as a comprehensive, home-based intervention aimed at reducing psychological distress by incorporating physical activity, dietary guidance, and social support. This study aimed to evaluate the feasibility, accrual and attrition rates, safety, and effectiveness of the CancerPEP intervention, with and without the biofeedback device, on psychological distress from baseline to 6 months, specifically focusing on the effects of group randomization and the difference between pre- and post-intervention results. Methods: This single-site, crossover randomized clinical trial included 104 cancer patients who were randomized to receive the CancerPEP intervention, with or without a Heart Rate Variability (HRV) biofeedback monitor. At 6 months, participants who did not receive the device were allowed to use one until the end of the year, while those who did receive the device were followed up to 12 months. Randomization was stratified by the presence or absence of clinically significant psychological distress and metastatic status. Psychological distress was assessed using the Kessler Psychological Distress Scale (K10) at baseline, 6 months, and 12 months. The primary endpoint was the presence of nonspecific psychological distress, as measured by the K10 scale at 6 months from the trial start, based on group randomization. A secondary exploratory analysis assessed psychological distress at baseline, 6 months, and 12 months for both groups, while controlling for group randomization and prognostic covariates. Prognostic covariates included age; comorbidities; time between diagnosis and randomization; treatment modality; relationship status; and use of prescribed medications for anxiety, depression, or both. An exploratory sub-analysis was conducted for the breast cancer subgroup, based on the sample size available after recruitment. The trial is registered at ClinicalTrials.gov (NCT05508412). Results: The provision of the HRV biofeedback monitor in conjunction with the CancerPEP intervention did not significantly affect the primary outcome in either the full sample or the breast cancer subgroup, indicating that the HRV biofeedback provision was not beneficial in this trial. No self-reported or otherwise discovered adverse events at the 6-month mark were observed. About 10% of participants were lost to follow-up in both the early and late HRV monitor provision groups. Participation in the CancerPEP program led to a significant reduction in psychological distress over time. The odds of psychological distress were significantly higher at the start of the trial than at the end of the intervention (aOR = 2.64, 95% CI: 1.53–4.56) or 6 months after the intervention (aOR = 2.94, 95% CI: 1.62–5.30). Similarly, in the breast cancer subgroup, distress was higher at the trial's start than at 6 months, i.e., after the intervention (aOR = 2.25, 95% CI: 1.24–4.08), or at the end of the trial at 12 months (aOR = 2.73, 95% CI: 1.35–5.52). Conclusions: CancerPEP significantly reduces psychological distress in cancer patients, with consistent improvements noted across various cancer types and stages, including benefits specifically for breast cancer patients. These findings build upon the success of the Prostate Cancer Patient Empowerment Program (PC-PEP), indicating that a similar comprehensive intervention can be advantageous for all cancer patients and may be further tailored to address specific needs. With its holistic approach—encompassing physical, dietary, and psychosocial support—CancerPEP shows promise as a vital component of survivorship care. Ongoing 24-month evaluations will yield critical data on its long-term benefits. Additionally, a randomized trial with a control group (usual care without intervention) for breast cancer patients is currently under way and could potentially guide the integration of CancerPEP into standard oncology care to enhance patient outcomes and quality of life. [ABSTRACT FROM AUTHOR]

The era of value-based health care is characterized by an increasing interest in patient-reported health outcomes. For this purpose we developed the rhinoplasty health care monitor (RHM), a streamlined outcome measurement protocol, including all rhinoplasty patients since 2014. Statistical analyses of patient-reported outcome data are automated and visually presented on a custom web-based dashboard. We describe the clinical and practical benefits of the RHM and discuss how routine prospective outcome measurements have upgraded our care standards. For this prospective study, 979 consecutive patients referred for functional (revision) rhinoplasty from April 2014 to August 2023 were included. Preoperative and 3- and 12-month postoperative scores on the Nasal Obstruction Symptom Evaluation scale (NOSE), Utrecht Questionnaire (UQ), and visual analog scales (VAS) were obtained. Of 979 referred patients, 599 (61.2%) were eligible for rhinoplasty. One year postoperatively, mean NOSE scale sum score improved from 69.1 ± 22.8 to 23.1 ± 23.5 (p < 0.001). Functional VAS scores improved from 4.1 ± 2.8 (left) and 4.1 ± 2.8 (right) to 7.5 ± 1.9 (left) and 7.3 ± 2.0 (right; p < 0.001). Mean UQ sum score improved from 12.0 ± 6.4 to 6.8 ± 3.3 and aesthetic VAS score improved from 4.5 ± 2.5 to 7.4 ± 1.7 (p < 0.001) 1 year postoperatively. Benefits of the outcome routine were improved patient selection, data-driven expectation management and patient empowerment, and targeted critical appraisals of surgical performance. In conclusion, routine, automated, prospective outcome monitoring provides physicians with a response to the increasing demand for data-driven insights in health outcomes. The limited effort that is needed to gather and monitor outcome data is heavily repaid by valuable insights into aspects of care that can be improved. [ABSTRACT FROM AUTHOR]

To examine the effect of training provided to type 2 diabetes patients according to the theory of planned behavior on self-efficacy and patient empowerment. This study, pre-test-post-test active control group single-blind experimental design, was conducted in the internal medicine outpatient clinic of a state hospital between April and October 2023. Participants were randomly assigned to the intervention group (IG; n = 45) and control group (CG; n = 47). The intervention group received a theory-based training program consisting of 5 sessions lasting approximately 40 min. each. Diabetes Management Self-Efficacy Scale, Patient Empowerment Scale and the patient's laboratory results were used for data collection. In the study, while the posttest self-efficacy and patient empowerment scores of the intervention group increased compared to the pretest, there was an decrease in HbA1C level. On the post-test measurements between groups, self-efficacy and patient empowerment scores were higher and effect sizes were higher in the intervention group, while no difference was found in HbA1C values. The training program provided according to the theory of planned behavior in diabetes patients provides positive contributions to disease management. • Diabetes mellitus is a chronic disease with substantial complications. • Creating behavioral changes is one of the most important steps in diabetes treatment. • Practical use of the theory of planned behavior increases patients' self-efficacy. • Theory-based diabetes education has a positive effect on patients' HbA1C levels. [ABSTRACT FROM AUTHOR]

ABSTRACT Aims Design Methods Results Conclusions Implications for the Profession and/or Patient Care Impact Reporting Method Patient or Public Contribution To compare nurses' and patients' reports of missed nursing care, explore patients' perspectives and utilise these insights to elucidate discrepancies or congruence between perceptions.A descriptive mixed‐methods design combining quantitative (questionnaires) and qualitative (semi‐structured interviews) methods.In the quantitative phase, 143 nurses and 643 patients completed the MISSCARE and MISSCARE‐Patient surveys. Correlations between their total missed care scores were examined. In the qualitative phase, 68 patients participated in semi‐structured interviews analysed using thematic analysis.The correlation between nurses' and patients' perceptions of missed nursing care was nonsignificant. Qualitative findings revealed three themes: (1) patients' need to preserve individuality; (2) most patients attributed missed care to systemic factors, while some attributed it to nurses' attitudes and (3) emotional responses varied from empathetic understanding, inadvertently enabling more missed care, to frustration and assertiveness to ensure receiving necessary care.This study reveals a significant discrepancy between nurses' and patients' perceptions of missed care. Patient perspectives offer insights into this misalignment, highlighting differences in care priorities and role understanding.Enhancing nurse–patient communication and patient empowerment are crucial. Healthcare institutions should integrate patient feedback into quality initiatives, create supportive work environments and foster a patient‐centred care culture. Effectively marketing nurses' expertise and implementing strategies to manage patient assertiveness are essential.This study addresses the discrepancy in perceptions of missed nursing care between nurses and patients. It reveals how patients' care priorities and attributions influence their experience of missed care. Findings will impact healthcare policymakers, nursing educators and hospital administrators, informing strategies to improve care quality, patient satisfaction and nurse work environments across healthcare settings.The study has adhered to STROBE guidelines for the quantitative component and SRQR guidelines for the qualitative component.No patient or public contribution. [ABSTRACT FROM AUTHOR]

Natriuretic peptides (NP) play an essential role in heart failure (HF) regulation, and their measurement has improved diagnostic and prognostic accuracy. Clinical symptoms and objective measurements, such as NP levels, should be included in the HF definition to render it more reliable and consistent among observers, hospitals, and healthcare systems. BNP and NT-proBNP are reasonable surrogates for cardiac disease, and their measurement is critical to early diagnosis and risk stratification of HF patients. NPs should be measured in all patients presenting with dyspnea or other symptoms suggestive of HF to facilitate early diagnosis and risk stratification. Both BNP and NT-proBNP are currently used for guided HF management and display comparable diagnostic and prognostic accuracy. Standardized cutoffs for each NP assay are essential for data comparison. The value of NP testing is recognized at various levels, including patient empowerment and education, analytical and operational issues, clinical HF management, and cost-effectiveness. [ABSTRACT FROM AUTHOR]

Half of hospitalized patients receive antibiotics, but they are rarely involved in shared decision making (SDM) on antibiotic therapy. We sought to understand the association between patient empowerment and their involvement in SDM on antibiotic therapy. From March 2021 to April 2022, we conducted a cross-sectional survey on hospitalized patients receiving antibiotic therapy for ≥1 day in a 1600-bed adult general hospital in Singapore. The questionnaire included seven items (five-point Likert scale) on involvement in SDM from SDM-Q-9 and 10 items (four-point Likert scale) on patient empowerment from HCEQ-10. A multi-variable logistic regression model was constructed to assess for independent associations between the three constructs of patient empowerment and involvement in SDM on antibiotic therapy. Of 636 hospitalized patients, mean age was 57.6 (SD 15.5) years, 61% were males and 37% had tertiary-level education. The majority (90%) were aware that they were on antibiotic therapy, but only 11% of them knew the name of the antibiotic given. After adjusting for age, gender, ethnicity, educational level, and duration of hospital stay, patients with a high-level of involvement in decisions (adjusted odds ratio (AOR) 3.63, 95% confidence interval (CI) 2.19–6.01), interactions with healthcare professionals (AOR 1.77, 95% CI 1.03–3.02), and degree of control over their hospital care (AOR 1.90, 95% CI 1.15–3.12) were more likely to have a high-level of involvement in SDM on antibiotic therapy. Empowering hospitalized patients with involvement in decisions, interactions with healthcare professionals, and control of their hospital care can increase their participation in SDM on antibiotic therapy in hospitals. [ABSTRACT FROM AUTHOR]

In the realm of medical ethics, the foundational principle of respecting patient autonomy holds significant importance, often emerging as a central concern in numerous ethically complex cases, as authorizing medical assistance in dying or healthy limb amputation on patient request. Even though advocates for either alternative regularly utilize prima facie principles to resolve ethical dilemmas, the interplay between these principles is often the core of the theoretical frameworks. As the ramifications of the sustainability crisis become increasingly evident, there is a growing need to integrate awareness for sustainability into medical decision-making, thus reintroducing potential conflict with patient autonomy. The contention of this study is that the ethical standards established in the 20th century may not adequately address the challenges that have arisen in the 21st century. The author suggests an advanced perception of patient autonomy that prioritizes fostering patients' knowledge, self-awareness, and sense of responsibility, going beyond a sole focus on their intrinsic values. Empowering patients could serve as a tool to align patient autonomy, beneficence, and the aim to reduce resource consumption. [ABSTRACT FROM AUTHOR]

Abstract Background The use of Cloud-based storage of personal health records has increased globally. The GPOC Series introduces the concept of a Global Patient co-Owned Cloud (GPOC) of personal health records. Here, we present the GPOC Series’ international survey on the necessity of a GPOC. Methods Online global survey with invitations sent to health ministries and major organisations. It received answers from health ministries and affiliated advisors of all 193 United Nations (UN) member states, 2 UN observer states (Holy See & Palestine) and 1 de facto UN non-member state (Taiwan) and from 18 major international organisations. The survey examined a dozen aspects encompassing demographics, privacy, sharing, movability, co-ownership, research, company usage, regulation and the necessity of a GPOC. Results The GPOC Survey elicited responses from 267 individuals from 214 entities, including all UN member states, and major international organisations. Twelve domains were identified, covering demographics, correctness, privacy, commercial use, medical and non-medical research, co-ownership, data sharing, record movement, ownership centralisation, patient rights, environmental concerns, and foundation creation. Results show high agreement on most issues, including support for co-ownership (89%) and movement of personal health records (84%). Disagreement was prominent regarding centralised ownership by the state (64%) and data sharing without consent (85%). Additionally, respondents expressed interest in a neutral, decentralised foundation for regulation (73%) and the environmental sustainability of electronic health records (84%). Conclusions A Global Patient co-Owned Cloud (GPOC) of personal health records could significantly enhance patient independence and involvement in health management, supported by the near consensus agreement across various domains identified in our survey. This consensus underscores the potential of GPOC to democratise healthcare and align with UN Sustainable Development Goals (SDGs). The survey results demonstrate strong support for GPOC’s role in promoting evidence-based patient management, reducing information silos, and fostering ethical data sharing. Moreover, the overwhelming agreement on key principles of co-ownership, data sharing, and environmental sustainability highlights the global inclination for a decentralised, patient-controlled PHR platform. This platform stands to empower patients worldwide, advance precision medicine, and contribute to the global development and dissemination of artificial intelligence in healthcare.

Abstract Background The use of digital tools such as electronic patient portals in different health care disciplines and settings has been increasing, but the rate of implementation in clinical practice still lags behind expectations. While studies have linked the use of electronic patient portals to positive health outcomes for patients, studies addressing the viewpoints of healthcare providers are rare. Methods We performed an online survey of attitudes of healthcare providers towards an electronic patient portal for mental health hospitals. The portal was developed by five communal providers of mental health care in different regions in Germany. The survey was carried out during the early phase of implementation of the portal. Results Twenty project leaders and 37 clinicians from five different mental health hospitals answered the questionnaire (response rate: 45% and 28%). Overall, acceptance of online applications among respondents was high. The healthcare providers mentioned perceived benefits (e.g. accessibility of new patient groups, use of therapy-free periods) as well as a number of technical, structural, organizational and staffing barriers for successful implementation in hospital settings (e.g. workload of healthcare providers and lack of staff, limited digital competences, unstable WLAN). Conclusion The perceived barriers and facilitators of the implementation of online applications and electronic patient portals in mental health hospitals identified by healthcare providers may be taken into account. Improving commitment of the healthcare providers to implementation and use of digital interventions may help foster digitalisation in mental health hospitals.

Abstract Africa’s dual burden of rising incidence of infectious diseases and increasing prevalence of non-communicable diseases (NCDs), such as cardiovascular diseases and diabetes, demands innovative approaches to disease surveillance, response, and cross-border health management in response to growing economic integration and global connectivity. In this context, we propose a discursive framework for the development and implementation of a multi-disease digital health passport (MDDHP) in Africa. The MDDHP would serve as a secure platform for storing and sharing individual health data, offering a comprehensive solution to track and respond to infectious diseases, facilitate the management of NCDs, and improve healthcare access across borders. Empowering individuals to proactively manage their health and improve overall outcomes is a key aspect of the MDDHP. In the paper, we examine the key elements necessary to effectively implement MDDHP, focusing on minimizing risks, maintaining efficacy, and driving its adoption while also taking into consideration the unique contexts of the continent. The paper is intended to provide an understanding of the key principles involved and contribute to the discussion on the development and successful implementation of MDDHP in Africa.

Abstract Background Value-based healthcare (VBHC) is an approach that focuses on delivering the highest possible value for patients while driving cost efficiency in health services. It emphasizes improving patient outcomes and experiences while optimizing the use of resources, shifting the healthcare system’s focus from the volume of services to the value delivered. Our study assessed the effectiveness of implementing a VBHC-principled, tailored preoperative evaluation in enhancing patient care and outcomes, as well as reducing healthcare costs. Methods We employed a quality improvement, before-and-after approach to assessing the effects of implementing VBHC strategies on the restructuring of the preoperative evaluation clinics at Humanitas Research Hospital. The intervention introduced a VBHC-tailored risk matrix during the postintervention phase (year 2021), and the results were compared with those of the preintervention phase (2019). The primary study outcome was the difference in the number of preoperative tests and visits at baseline and after the VBHC approach. Secondary outcomes were patient outcomes and costs. Results A total of 9722 patients were included: 5242 during 2019 (baseline) and 4,480 during 2021 (VBHC approach). The median age of the population was 63 (IQR 51–72), 23% of patients were classified as ASA 3 and 4, and 26.8% (2,955 cases) were day surgery cases. We found a considerable decrease in the number of preoperative tests ordered for each patient [6.2 (2.5) vs 5.3 (2.6) tests, p

Africa's dual burden of rising incidence of infectious diseases and increasing prevalence of non-communicable diseases (NCDs), such as cardiovascular diseases and diabetes, demands innovative approaches to disease surveillance, response, and cross-border health management in response to growing economic integration and global connectivity. In this context, we propose a discursive framework for the development and implementation of a multi-disease digital health passport (MDDHP) in Africa. The MDDHP would serve as a secure platform for storing and sharing individual health data, offering a comprehensive solution to track and respond to infectious diseases, facilitate the management of NCDs, and improve healthcare access across borders. Empowering individuals to proactively manage their health and improve overall outcomes is a key aspect of the MDDHP. In the paper, we examine the key elements necessary to effectively implement MDDHP, focusing on minimizing risks, maintaining efficacy, and driving its adoption while also taking into consideration the unique contexts of the continent. The paper is intended to provide an understanding of the key principles involved and contribute to the discussion on the development and successful implementation of MDDHP in Africa. [ABSTRACT FROM AUTHOR]

In recent years, rapidly changing disease profile patterns, shortage & uneven utilization of healthcare professionals contributed massive burden on the Indian healthcare system, which resulted in varying, fragmented, inconsistent healthcare delivery to the patients and poor patient management. Patients often face and experience many challenges like lack of accessibility, poor patient-healthcare provider relationships, and inadequate quality of care, resulting in unnecessary economic burden in managing their health conditions. Thus Indian healthcare reform is essential in enhancing its capacity to fulfill patients' health needs that can be addressed by focusing on key sustainable strategies and initiatives meant for enhancing coordination of care, expanding services accessibility, redeveloping healthcare infrastructure, implementing workforce innovation and strong governance with the incorporation of core principles such as patient-centeredness, integrated care and collaborative care approaches. The clinical and ambulatory pharmacy practice are fragment of the healthcare delivery which delivers pharmaceutical care and fulfils the needs of patients across healthcare settings. This paper focuses on the present & future perspectives of ambulatory pharmacy practice in India and the factors to be considered for implementing it in patient care. [ABSTRACT FROM AUTHOR]

Atrial fibrillation (AF) is the most common heart rhythm disorder in the Western world. Between the years 2010 and 2019, the global prevalence of AF rose from 33.5 million to 59 million, highlighting the importance of developing equitable treatments for patients. The disease is associated with symptoms such as palpitations, dizziness, fatigue, shortness of breath, and cognitive dysfunction. In addition, AF increases the risk of developing a stroke and heart failure. Despite new insights into risk factors that can lead to the development of AF, the success of current treatments is suboptimal. Numerous risk factors, such as hypertension, diabetes, and obesity, have been associated with the development and progression of AF. As these can be lifestyle-related risk factors, lifestyle modification may be a solution to reduce AF-related symptoms as well as episodes. Research results show that certain dietary changes can reduce AF and numerous risk factors for AF. Increasing attention is being given to Mediterranean and whole, plant-based eating patterns, which emphasize eating grains, legumes, vegetables, fruits, and nuts, while excluding most—or all—animal products. Hence, what are the beneficial aspects of a Mediterranean and plant-based diet which consists mainly of unprocessed foods? In the current review, we discuss the outcomes of diet-based treatments. Moreover, other diet-related treatments, brought up by patient initiatives, are highlighted. These patient-initiated studies include L-glutamine and electrolytes as options to manage AF. Also, we highlight the emerging importance of valuing patient needs and a quality-of-life-centered approach to medicine. As indicated by recent studies and patient experiences, citizen science can create inclusive solutions that lead to patient empowerment and a holistic approach for AF management. [ABSTRACT FROM AUTHOR]

Fibromyalgia is a chronic disease that affects a considerable fraction of the global population, primarily women. Physical activity is often recommended as a tool to manage the symptoms. In this study, we tried to replicate a positive result of pain reduction through physical activity. After collecting pain and physical activity data from seven women with fibromyalgia, one patient experienced a considerable reduction in pain intensity. According to the patient, the improvement was related to physical activity. Our study was conducted to investigate the replicability of this result through personalized activity recommendations. Out of the other six patients, three experienced a reduction in pain. The remaining three patients did not experience any pain relief. Our results show that two of these were not able to follow the activity recommendations. These results indicate that physical activity may have a positive effect on chronic pain patients. To estimate how effective physical activity can be for this patient group, an intervention with longer follow-ups and larger sample sizes needs to be performed in the future. [ABSTRACT FROM AUTHOR]

Background: The role of patients in healthcare research is slowly evolving, although patient roles in the research process are limited. This paper reports on a patient‐led research project aiming to develop a musical hearing training programme for patients with a cochlear implant (CI): the Musi‐CI programme. A CI is an inner ear prosthesis that allows people with severe hearing loss to hear. However, while speech can be understood, CI users cannot fully enjoy music or feel aversion to it. The Musi‐CI programme aims to reduce this music aversion to ultimately improve music enjoyment and social participation. The development of the Musi‐CI programme was supported by a consortium of professionals in CI rehabilitation and research. The aim of this paper is to describe and evaluate the Musi‐CI programme development process and its impact on professional CI rehabilitation and research. Methods: Programme development was described using a 3‐layered process model of action research, distinguishing the CI user process, the healthcare professional process and the research process. To evaluate perceptions on the programme development process, consortium partners provided written comments and participated in a reflexive evaluation session that was video‐recorded. Reflexive evaluation aims for collective learning and strengthening collaboration among participants. Written comments and video data were analysed using template analysis. Results: The involvement of an expert by experience was perceived as challenging but rewarding for all consortium partners, opening up new perspectives on CI‐rehabilitation practice and research. Data analysis revealed two themes on the programme development process, professional space and acknowledgement, and two themes on the outcomes on CI rehabilitation and research: critical reflection and paradigm shift. Conclusion: Experts by experience represent a different knowledge domain that may contribute to change in rehabilitation and research. Patient or Public Contribution: The development of the programme was initiated by a professional musician and CI user who organized the funding, had a leading role throughout the research process, including the write‐up of the results, and co‐authored this paper. [ABSTRACT FROM AUTHOR]

This article explores the multifaceted concept of cardiovascular disease (CVD) patients' empowerment, emphasizing a shift from compliance-oriented models to active patient participation. In recognizing that cardiovascular disease is a paramount global health challenge, this study illuminates the pressing need for empowering patients, underscoring their role as active participants in their healthcare journey. Grounded in 5P-Medicine principles—Predictive, Preventive, Participatory, Personalized, and Precision Medicine—the importance of empowering CVD patients through analytics, prevention, participatory decision making, and personalized treatments is highlighted. Incorporating a comprehensive overview of patient empowerment strategies, including self-management, health literacy, patient involvement, and shared decision making, the article advocates for tailored approaches aligned with individual needs, cultural contexts, and healthcare systems. Technological integration is examined to enhance patient engagement and personalized healthcare experiences. The critical role of patient-centered design in integrating digital tools for CVD management is emphasized, ensuring successful adoption and meaningful impact on healthcare outcomes. The conclusion proposes vital research questions addressing challenges and opportunities in CVD patient empowerment. These questions stress the importance of medical community research, understanding user expectations, evaluating existing technologies, defining ideal empowerment scenarios, and conducting a literature review for informed advancements. This article lays the foundation for future research, contributing to ongoing patient-centered healthcare evolution, especially in empowering individuals with a 5P-Medicine approach to cardiovascular diseases. [ABSTRACT FROM AUTHOR]

United States healthcare outcomes, including avoidable mortality rates, are among the worst of high-income countries despite the highest healthcare spending per capita. While community pharmacies contribute to chronic disease management and preventive medicine, they also offer consumer products that increase mortality risks and the prevalence of cardiovascular diseases, diabetes, cancer, and depression. To resolve these contradictions, our perspective article describes opportunities for major pharmacy chains (e.g., CVS Pharmacy and Walgreens) to introduce digital health aisles dedicated to prescription and over-the-counter digital therapeutics (DTx), together with mobile apps and wearables that support disease self-management, wellness, and well-being. We provide an evidence-based rationale for digital health aisles to replace spaces devoted to sugar-sweetened beverages and other unhealthy commodities (alcohol, tobacco) that may increase risks for premature death. We discuss how digital health aisles can serve as marketing and patient education resources, informing customers about commercially available DTx and other technologies that support healthy lifestyles. Since pharmacy practice requires symbiotic balancing between profit margins and patient-centered, value-based care, replacing health-harming products with health-promoting technologies could positively impact prevention of chronic diseases, as well as the physical and mental health of patients and caregivers who visit neighborhood pharmacies in order to pick up medicines. [ABSTRACT FROM AUTHOR]

Background: People with multimorbidity are increasingly engaged, enabled, and empowered to take responsibility for managing their health status. The purpose of the study was to systematically review and appraise the psychometric properties of tools measuring patient engagement in adults with multimorbidity and their applicability for use within engagement programs. Methods: PubMed, Scopus, Web of Science, and PsycInfo were searched from inception to 1 July 2021. Gray literature was searched using EBSCO hostdatabase "Open dissertation". The reference lists of studies meeting the inclusion criteria were searched to identify additional eligible studies. The screening of the search results and the data extraction were performed independently by two reviewers. The methodological quality of the included studies was evaluated with the COSMIN checklist. Relevant data from all included articles were extracted and summarized in evidence synthesis tables. Results: Twenty articles on eight tools were included. We included tools that measure all four dimensions of patient engagement (i.e., engagement, empowerment, activation, and participation). Their psychometric properties were analyzed separately. Most tools were developed in the last 10 years in Europe or the USA. The comparison of the estimated psychometric properties of the retrieved tools highlighted a significant lack of reliable patient engagement measures for people with multimorbidity. Available measures capture a diversity of constructs and have very limited evidence of psychometric properties that are vital for patient-reported measures, such as invariance, reliability, and responsiveness. Conclusion: This review clarifies how patient engagement, as operationalized in measures purporting to capture this concept, overlaps with, and differs from other related constructs in adults with multimorbidity. The methodological quality of psychometric tools measuring patient engagement in adults with multimorbidity could be improved. [ABSTRACT FROM AUTHOR]

Background: Contemporary society is witnessing a surge in non-surgical aesthetics and plastic surgery, reflecting a growing interest in physical enhancement and rejuvenation. However, despite this burgeoning trend, there remains a gap in the literature concerning the ethical considerations, patient empowerment strategies, and empathetic engagement within these fields. Methodology: This systematic review follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, systematically searching relevant literature from January 2010 to January 2024 across multiple databases. The search aimed to identify studies focusing on ethics, empowerment, and empathy within aesthetics and plastic surgery. Thematic analysis was utilised to synthesise the findings from the selected studies. Results: The systematic literature search yielded 344 articles, from which 16 met the inclusion criteria. Thematic analysis of these studies revealed key themes revolving around ethical considerations, patient empowerment, empathetic engagement, and the concept of empowered empathy. Additionally, the review proposed the Harmonised Ethical and Empowered Empathy for Aesthetic Literacy (HEEAL) paradigm as a guiding framework for personalised practice in these fields. Conclusions: Empathy, while acknowledged as essential for patient care, presents challenges such as empathy contagion and fatigue. The proposed HEEAL paradigm provides a comprehensive framework for delivering personalised patient-centred care in non-surgical aesthetics and plastic surgery. The review highlights the critical role of empowered empathy in navigating the complexities of patient care, ensuring both patient satisfaction and practitioner resilience in the face of emotional demands. Level of Evidence: Not ratable [ABSTRACT FROM AUTHOR]

Background: Value-based healthcare (VBHC) is an approach that focuses on delivering the highest possible value for patients while driving cost efficiency in health services. It emphasizes improving patient outcomes and experiences while optimizing the use of resources, shifting the healthcare system’s focus from the volume of services to the value delivered. Our study assessed the effectiveness of implementing a VBHC-principled, tailored preoperative evaluation in enhancing patient care and outcomes, as well as reducing healthcare costs. Methods: We employed a quality improvement, before-and-after approach to assessing the effects of implementing VBHC strategies on the restructuring of the preoperative evaluation clinics at Humanitas Research Hospital. The intervention introduced a VBHC-tailored risk matrix during the postintervention phase (year 2021), and the results were compared with those of the preintervention phase (2019). The primary study outcome was the difference in the number of preoperative tests and visits at baseline and after the VBHC approach. Secondary outcomes were patient outcomes and costs. Results: A total of 9722 patients were included: 5242 during 2019 (baseline) and 4,480 during 2021 (VBHC approach). The median age of the population was 63 (IQR 51–72), 23% of patients were classified as ASA 3 and 4, and 26.8% (2,955 cases) were day surgery cases. We found a considerable decrease in the number of preoperative tests ordered for each patient [6.2 (2.5) vs 5.3 (2.6) tests, p < 0.001]. The number of preoperative chest X-ray, electrocardiogram, and cardiac exams decreased significantly with VBHC. The length of the preoperative evaluation was significantly shorter with VBHC [373 (136) vs 290 (157) min, p < 0.001]. Cost analysis demonstrated a significant reduction in costs, while there was no difference in clinical outcomes. Conclusions: We demonstrated the feasibility, safety, and cost-effectiveness of a tailored approach for preoperative evaluation. The implementation of VBHC enhanced value, as evidenced by decreased patient time in preoperative evaluation and by a reduction in unnecessary preoperative tests. [ABSTRACT FROM AUTHOR]

Parkinson's disease (PD) poses a number of challenges for individuals, affecting them physically, mentally, emotionally, and socially. The complex nature of PD necessitates empowering patients to address their unique needs and challenges, fostering improved health outcomes and a better quality of life. Patient empowerment is a multifaceted concept crucial to enhancing healthcare outcomes, particularly in chronic conditions such as PD. However, defining patient empowerment presents challenges due to its varied interpretations across disciplines and individuals. Essential components include access to information, development of self-care skills, and fostering a supportive environment. Strategies for patient empowerment encompass health literacy, education, and shared decision-making within a trusted healthcare provider-patient relationship. In PD, patient empowerment is crucial due to the disease's phenotypic variability and subjective impact on quality of life. Patients must navigate individualized treatment plans and advocate for their needs, given the absence of objective markers of disease progression. Empowerment facilitates shared decision-making and enables patients to communicate their unique experiences and management goals effectively. This paper provides a comprehensive overview of the dimensions and strategies associated with patient empowerment, its definition and the facilitators that are necessary, emphasizing its critical importance and relevance in Parkinson's management. At the end of this review is a personal perspective as one of the authors is a person with lived experience. [ABSTRACT FROM AUTHOR]

Introduction: Widespread use of smartphone applications has opened new perspectives for home Blood Pressure monitoring based on mobile health (mHealth) technologies. Patient engagement has been dubbed 'the silver bullet of the century'. Aim: The aim was to identify the impact of engagement in patients with blood pressure using mHealth. Methods: This scoping review was conducted in accordance with the Ark0sey and O'Malley framework. Database: Pubmed, CINAHL, Scopus and PsycInfo. This review considered both qualitative and quantitative primary searches. We excluded articles belonging to grey literature, secondary literature and paediatric setting. Between September and November 2023, the review was carried out. Results: A total of 569 documents were retrieved from the four databases. After the deduplication process, five articles were removed. The selection process based on titles and abstracts included 133 records. Ten studies were selected and analysed. The reviewers identified the following themes: device type and mobile applications, engagement, blood pressure control, health behaviours and hypertension knowledge. Self-management using digital technologies in the home is strongly linked to engagement, reduction and control of Blood Pressure, improved health practices and increased knowledge of hypertension. Healthcare interventions using IT platforms have had a significant impact on the health outcomes of patients diagnosed with hypertension. Conclusions: The review findings suggest the value of these technologies in improving patient engagement and, consequently, adherence to antihypertensive treatment and achieving blood pressure control rates, potentially reducing cardiovascular risk. [ABSTRACT FROM AUTHOR]

Patient empowerment is an important concept in the study of physician–patient communication and is becoming increasingly popular in medical practices. However, previous studies have yielded inconsistent results regarding its effects. To reconcile these findings and establish a robust connection between empowerment and patient adherence, our study blends dyadic power theory with patient empowerment research. Using mixed methods, including both empirical modeling and controlled experiments, we found that patients who are equally empowered, as compared to those who are under- or over-empowered, exhibit a stronger dominance intention, which subsequently positively affects their adherence and satisfaction. Underlying this nonlinear influence of empowerment on adherence are two independent pathways: one channeling the effect through dominance intention and the other through perceived physician incompetence. Perceived physician's argument quality represents a boundary condition. This research offers meaningful theoretical and practical implications to the literatures on patient empowerment and adherence by revealing the curvilinear relationship. [ABSTRACT FROM AUTHOR]

Global crises have forced the healthcare sector to advance the way they practise. Patient empowerment has emerged as one of the solutions to face these challenges. Nevertheless, patient empowerment is still lacking for accepted conditions, making it difficult to effectively promote within the healthcare system. This study aims to systemically map the concept of patient empowerment using principles of systems thinking with the Boardman Soft Systems Methodology that enables a graphical visualization (i.e., Systemigrams). This includes levels of patient empowerment and their relationship with other concepts such as health literacy, health providers, self‐management, patient characteristics and healthcare outcomes. This study contributes to the literature by (a) articulating a set of conditions to enable patient empowerment, (b) identifying the key concept that might influence the level of patient empowerment and (c) providing guidance and propositions for future research that can promote and further study patient empowerment. [ABSTRACT FROM AUTHOR]

Introduction: Psoriatic arthritis (PsA) is a complex, progressive, and often debilitating disease. Despite recent advances in treatment, numerous unmet needs in patient care persist. Rheumacensus is a multistakeholder, pan-European initiative designed to identify ways to elevate the standard of care (SoC) and treatment ambition for patients with PsA, using the perspectives of three key stakeholder groups: patients, healthcare professionals (HCPs) and payors. Methods: Rheumacensus followed three phases: an insights-gathering workshop to identify current unmet needs in PsA and an area of focus for the project, a modified Delphi process to gain consensus on improvements within the agreed area of focus, and a Consensus Council (CC) meeting which used consensus statements as inspiration to generate 'Calls to Action' (CTA)—practical measures which, if implemented, could elevate the SoC for patients with PsA. Results: The Rheumacensus CC consisted of four patient representatives, four HCPs and four payors. All 12 members completed all three Delphi e-consultations. The shared area of focus that informed the Delphi process was "patient empowerment through education on the disease and treatment options available, to enable patient involvement in management". Four key themes emerged from the Delphi process: patient empowerment, patient knowledge and sources of education, patient–HCP consultations, and optimal initial treatment. Statements within these themes informed 12 overarching CTA, which focus on the need for a multistakeholder approach to implementing a paradigm shift towards patient-centred care and improved outcomes for patients with PsA. Conclusion: Rheumacensus has identified shortcomings in the current SoC for patients with PsA and provides a foundation for change through practical CTA. It is hoped that all stakeholders will now take practical steps towards implementing these CTA across Europe to elevate the SoC for patients with PsA. Plain Language Summary: Inequalities in the care patients with psoriatic arthritis (PsA) receive can be mainly explained by poorly coordinated management due to a lack of disease and treatment knowledge. This report is about a programme called Rheumacensus which has the overall aim of improving the standard of care (SoC) for patients with PsA. Rheumacensus brings together the points of view of three key groups involved in the care of people with PsA: patients, payors and healthcare professionals (HCPs) from across Europe. Together, these three groups agreed to focus on patient empowerment through education on the disease and treatment options as a way to raise the SoC. Through a series of exercises—to agree on the current SoC and what needs to be improved—and group discussions, four themes were established which were used by the groups to help them suggest 'Calls to action' (CTA). The CTAs were ideas of how improvements could be made or what needs to be done to improve the care patients receive. The four themes were (1) patient empowerment, (2) patient knowledge, (3) patient–HCP consultation and (4) optimal initial treatment. In total, 12 CTAs were developed across these themes that provide direction and practical next steps which patients, payors and HCPs could take to drive change and make a real difference to patients by improving their care. [ABSTRACT FROM AUTHOR]

Trauma‐informed care has emerged as a prominent strategy to eliminate coercive practices and improve experiences of care in mental health settings, with advocacy from international bodies for mental health reform. Despite this, there remains a significant gap in research understanding the integration of trauma‐informed care in mental health nursing practice, particularly when applied to the acute mental health or hospital‐based setting. The study aimed to explore the experiences of mental health nurses employed in acute hospital‐based settings from a trauma‐informed care perspective. The study design was qualitative, using a phenomenological approach to research. A total of 29 nurses employed in acute mental health or hospital‐based environments participated. Three over‐arching themes were uncovered: 'Embodied Awareness': highlighting mental health nursing emotional capabilities are deeply rooted in bodily awareness. 'Navigating Safety': signifying spatial elements of fear and how some mental health nurses' resort to coercive or restrictive practices for self‐preservation. 'Caring Amidst Uncertainty': revealing the relational influences of security guards in mental health nursing. The study reveals a significant gap in trauma‐informed care implementation when applied to the context of mental health nursing practice in this setting. Limited evidence on trauma‐informed care for mental health nurses, coupled with inadequate workforce preparation and challenging work environments, hinder the effective integration of it. To genuinely embed TIC in acute mental health settings, the study emphasises the need for a thorough exploration of what this entails for mental health nurses. [ABSTRACT FROM AUTHOR]

Introduction: Patient and public involvement is vital for high‐quality research. Integrating patients' and providers' perspectives early in research enhances the feasibility and relevance of study results. Within our family practice‐based research network ForN, we established a standing patient advisory board (PAB) to include patients with diverse conditions and experiences. In this paper, we aim to describe the establishment and functioning of a standing PAB in family medicine research from patients' and researchers' perspectives. Methods: After each PAB meeting, patients and researchers were asked to name anonymously positive and challenging moments in a feedback form with open questions. Researchers were also asked to reflect on how they implemented the discussion content in their research projects. The responses from both groups were transferred to MAXQDA 2018 and analyzed separately using thematic analysis. Results: We analyzed 40 feedback forms from patients and 14 feedback forms from researchers. The dominant theme in the patients' feedback was 'exchange': They positively emphasized the 'exciting and open discussions' and the exchange of perspectives with one another and researchers. The clarity of the researchers' presentations and the research topics were appreciated. Researchers also positively highlighted the open atmosphere of the discussions. Presenting their research to the PAB helped most researchers reflect on their research topics from patients' perspectives and implement changes. However, researchers also mentioned several barriers to the implementation of PAB members' feedback. Conclusion: The establishment of a standing PAB in family practice research is feasible and productive both from patients' and researchers' perspectives. Patient or Public Contribution: This study reports the evaluation of the establishment of a standing PAB in family practice research. Board members are involved in the design of studies, the co‐production of interventions and information material, and the interpretation of data. [ABSTRACT FROM AUTHOR]

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As transplant programmes have evolved to allow a wider donor pool, organ acceptance decisions have become increasingly complex and lack transparency and equality. Clinical scoring tools exist but there is limited consensus on their use. From a prospective observation of consecutive deceased-donor kidney offers in a large urban transplant centre, a simple score was developed based on donor age and other risk characteristics, excluding ischemia time and graft histology. The score was validated in subsequent cohorts of consecutive offers in the United Kingdom and Germany. In the development cohort of 389 kidney offers, 110 (28%) were transplanted and 175 (45%) declined. Nine risk factors were incorporated into a score based on age, but adjusted for the number of risk factors present, making an “adjusted donor age,” with offers separated into equal quintiles by decade. The score was validated in a UK cohort of 380 subsequent offers, and a German cohort of 431 offers. In both cohorts adjusted donor age discriminated between favourable and poor post-transplant outcomes (C-statistic 0.77 in the United Kingdom, 95% CI 0.65–0.88, and 0.71 in Germany, 95% CI 0.64–0.77). Adjusted donor age is a simple score quantifying deceased donor kidney quality, which is consistent with current practice and predicts post-transplant outcome.

Abstract Purpose Shared decision‐making (SDM) is crucial in pancreatic cancer treatment due to its choice‐sensitive nature and limited prognosis. Treatment of pancreatic cancer is organized in a network approach. Several obstacles exist on different levels—patient, healthcare professional, organizational, societal—that impede integration of SDM. This study aims to identify barriers and facilitators to SDM implementation within a comprehensive cancer network. Methods A qualitative research design was applied, involving interviews and focus groups on barriers and facilitators with healthcare professionals involved in the implementation of SDM. In one comprehensive cancer network in the Netherlands, including seven hospitals, a project was initiated with the goal of empowering patients and healthcare professionals in SDM throughout primary, secondary and tertiary healthcare settings. A total of 17 participants were assessed. Directed qualitative content analysis was performed by two researchers. Results Main findings revealed barriers such as time constraints, lack of priority of physicians, little involvement of general practitioners, and insufficient social context of patients in referrals, alongside facilitators including learning communities with practical SDM examples, metro mapping, involvement of case manager in implementation and patient empowerment strategies. Conclusion Addressing cultural, systemic barriers and developing innovative strategies are of importance to enhance SDM in pancreatic cancer treatment in a network approach. This study provides understanding of SDM implementation in complex healthcare settings and offers valuable guidance for future interventions seeking to improve decision‐making processes in pancreatic cancer treatment and beyond.

Background: Before administration of myelosuppressive chemotherapy, complete blood counts (CBC) collected at the hospital/nursing stations are evaluated to avoid severe bone marrow suppression. This maintains disease fixation which often reduces their quality of life. This mixed-method study examined at home self-testing of CBC, the test quality, and the effects on patients’ mental well-being. Methods: Patients with breast cancer receiving chemotherapy were recruited and trained to perform capillary finger prick CBC testing at home using the HemoScreen Point-of-Care instrument and to upload the test results to the hospital’s IT system subsequently. A venous reference CBC sample was taken and tested at the hospital on the day of self-testing. Semi-structured interviews with open-ended components were performed to investigate the user experience and the impact of self-testing on the patients’ everyday lives. Results: Thirty-nine patients completed the self-testing education using the HemoScreen instrument. Eight patients withdrew, while the remaining 31 patients performed 161 home tests (2–11 tests per patient) over a 4-month period. The test results compared well with the venous reference CBCs except for platelet counts (correlation coefficient 0.26). Qualitative interviews with nine of the 31 patients emphasized that the patients were comfortable using the self-testing instrument and becoming an active partner in their own treatment. Interpretation: CBC self-testing at home produced clinically valid hemoglobin and white blood cell counts with the added benefit that the patients became active partners in their own treatment course, which was of great importance for the patients and increased their wellbeing.

Abstract Introduction Psoriatic arthritis (PsA) is a complex, progressive, and often debilitating disease. Despite recent advances in treatment, numerous unmet needs in patient care persist. Rheumacensus is a multistakeholder, pan-European initiative designed to identify ways to elevate the standard of care (SoC) and treatment ambition for patients with PsA, using the perspectives of three key stakeholder groups: patients, healthcare professionals (HCPs) and payors. Methods Rheumacensus followed three phases: an insights-gathering workshop to identify current unmet needs in PsA and an area of focus for the project, a modified Delphi process to gain consensus on improvements within the agreed area of focus, and a Consensus Council (CC) meeting which used consensus statements as inspiration to generate ‘Calls to Action’ (CTA)—practical measures which, if implemented, could elevate the SoC for patients with PsA. Results The Rheumacensus CC consisted of four patient representatives, four HCPs and four payors. All 12 members completed all three Delphi e-consultations. The shared area of focus that informed the Delphi process was “patient empowerment through education on the disease and treatment options available, to enable patient involvement in management”. Four key themes emerged from the Delphi process: patient empowerment, patient knowledge and sources of education, patient–HCP consultations, and optimal initial treatment. Statements within these themes informed 12 overarching CTA, which focus on the need for a multistakeholder approach to implementing a paradigm shift towards patient-centred care and improved outcomes for patients with PsA. Conclusion Rheumacensus has identified shortcomings in the current SoC for patients with PsA and provides a foundation for change through practical CTA. It is hoped that all stakeholders will now take practical steps towards implementing these CTA across Europe to elevate the SoC for patients with PsA.