Patient-reported experience measures for people living with dementia: A scoping review.

The prevalence of dementia is increasing globally, with an estimated 139 million people expected to be living with dementia by 2050. Across numerous countries, substandard care for people with dementia is evident, with quality improvement needed. Recently, a focus on patient-reported experience measures (PREMs) has been utilised in healthcare services as a method of evaluating the care experiences provided and determining areas of improvement. The literature is scarce regarding the feasibility and acceptability of implementing PREMs with people with moderate to advanced dementia. This scoping review aimed to identify PREMs that have been used with vulnerable populations including people with cognitive impairment, mental health concerns, and children, outline dimensions included, and determine adaptions made to the PREMs to improve acceptability of the instruments for vulnerable populations. A database search of Medline was conducted to identify 36 studies including 32 PREMs. The PREMs identified covered a range of dimensions, most frequently care effectiveness, care environment, and patient involvement. The most common adaption to the PREMs was simplification of wording and sentence structure. Several measures conflated patient outcomes and patient satisfaction with patient experience, limiting utility for improving patient experience specifically. While several PREMs have been used with people with dementia, challenges in their implementation and their applicability to specific settings limit their use more broadly. Evidently, there is a need for development of a PREM for people with moderate to advanced dementia that is applicable across healthcare settings and is appropriately adapted for varying cognitive and communicative barriers.

Quality of care provided to patients with type 2 diabetes mellitus in Tshwane, South Africa.

BACKGROUND:  Type 2 diabetes mellitus (T2D) is a public health challenge, affecting 90% of all patients with diabetes, globally. Compliance to treatment guidelines among healthcare professionals (HCPs) is low, thus resulting in inadequate quality of patient care and poor health outcomes among patients. AIM:  To examine the availability of equipment, guidelines, screening and education offered to patients with T2D and compare between clinics and community health centres (CHCs). SETTING:  Tshwane Metropolitan Municipality, Gauteng Province, South Africa. METHODS:  A cross-sectional descriptive study utilised a self-administered questionnaire to collect data from nurses and doctors responsible for treating patients with T2D, from May to June 2022. About 250 eligible HCPs were recruited during routine morning meetings in 22 clinics and six CHCs. RESULTS:  More than 80% of HCPs reported having basic equipment except for ophthalmoscopes, Snellen charts (67%), tuning forks (64%), electrocardiograms (ECG) (46%) and monofilaments (12%). SEMDSA guidelines were reported by 16% of the participants, Diabetic Foot Care Guidelines were reported by 54% and Dietary Guidelines for Diabetic Patients by 55%. Furthermore, 91%, 71% and 69% of HCPs reported that ECG, microalbumin-creatinine and foot examinations were not always performed, respectively. About 66% and 17% always offered individual educational and group sessions, respectively. CONCLUSION:  Equipment availability and compliance with treatment guidelines, patient education and screening of chronic complications are inadequate.Contribution: The study highlights the poor adherence to treatment guidelines and inadequate equipment in health facilities. These shortcomings could lead to missed opportunities for early diagnosis of complications and ultimately poorer patient outcomes.

Reliability and Factor Structure of the Well-Being and Respect for Human Rights Questionnaire in Measuring Caregivers' Perception.

Background: This study has investigated perceptions of respect for users' rights among informal caregivers in mental healthcare settings, aligning with the guidelines outlined in the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and the World Health Organization QualityRights initiative. The study has employed the questionnaire on Well-being at Work and Respect for Human Rights (WWRR) among informal caregivers and tested whether the questionnaire's factor structure among informal caregivers aligns with that of users and health workers. We have hypothesized that informal caregivers prioritize users' needs and rights over the care context's climate. Methods: This was a cross-sectional study. The "Well-being at Work and Respect for Human Rights" questionnaire was distributed to 100 caregivers in 4 territorial mental health facilities in Sardinia, Italy. Confirmatory Factor Analysis (CFA) was utilized to assess the participants' responses. Results: Participants reported high satisfaction with their relatives' treatment, perceiving a high level of respect for human rights among users and healthcare professionals. However, they highlighted insufficient resources for services, particularly the need for additional staff. CFA revealed that a scale with the first five items demonstrated good reliability, convergent validity, and discrimination. Mean scores indicated high satisfaction and perception of respect for human rights across the sample, with no significant differences by age or gender. Conclusion: Satisfaction with users' rights is closely correlated with other factors comprising the notion of organizational well-being within a healthcare service.

Development of Automated Triggers in Ambulatory Settings in Brazil: Protocol for a Machine Learning-Based Design Thinking Study.

BACKGROUND: The use of technologies has had a significant impact on patient safety and the quality of care and has increased globally. In the literature, it has been reported that people die annually due to adverse events (AEs), and various methods exist for investigating and measuring AEs. However, some methods have a limited scope, data extraction, and the need for data standardization. In Brazil, there are few studies on the application of trigger tools, and this study is the first to create automated triggers in ambulatory care. OBJECTIVE: This study aims to develop a machine learning (ML)-based automated trigger for outpatient health care settings in Brazil. METHODS: A mixed methods research will be conducted within a design thinking framework and the principles will be applied in creating the automated triggers, following the stages of (1) empathize and define the problem, involving observations and inquiries to comprehend both the user and the challenge at hand; (2) ideation, where various solutions to the problem are generated; (3) prototyping, involving the construction of a minimal representation of the best solutions; (4) testing, where user feedback is obtained to refine the solution; and (5) implementation, where the refined solution is tested, changes are assessed, and scaling is considered. Furthermore, ML methods will be adopted to develop automated triggers, tailored to the local context in collaboration with an expert in the field. RESULTS: This protocol describes a research study in its preliminary stages, prior to any data gathering and analysis. The study was approved by the members of the organizations within the institution in January 2024 and by the ethics board of the University of São Paulo and the institution where the study will take place. in May 2024. As of June 2024, stage 1 commenced with data gathering for qualitative research. A separate paper focused on explaining the method of ML will be considered after the outcomes of stages 1 and 2 in this study. CONCLUSIONS: After the development of automated triggers in the outpatient setting, it will be possible to prevent and identify potential risks of AEs more promptly, providing valuable information. This technological innovation not only promotes advances in clinical practice but also contributes to the dissemination of techniques and knowledge related to patient safety. Additionally, health care professionals can adopt evidence-based preventive measures, reducing costs associated with AEs and hospital readmissions, enhancing productivity in outpatient care, and contributing to the safety, quality, and effectiveness of care provided. Additionally, in the future, if the outcome is successful, there is the potential to apply it in all units, as planned by the institutional organization. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/55466.

The Law, Dementia and Sexuality- Is the Law striking the right balance?

BACKGROUND AND OBJECTIVES: English and Welsh laws require "contemporaneous" consent to sexual relations, often precluding "non-capacituos" people living with advanced dementia from these human interactions. RESEARCH DESIGN AND METHODS: The views of people living with dementia, carers, professionals, and over-55s were explored on implications of current laws on sexuality in dementia. 35 participants from England, were recruited through purposive selective sampling. Audio-taped semi-structured interviews were transcribed and thematically analysed, with each stakeholder group coded separately. RESULTS: Common themes across stakeholders were: (i) law reform needed due to their hammer-like effect ignoring the individual; (ii) dissonant theme of needing the law for protection; (iii) negative impact of denied intimacy on individuals and partners; (iv) support for Advance Decisions on Intimacy with caveats;(v) less support for involvement of Court of Protection and Powers of Attorney; (vi) call for review of capacity concept with support for an assent model. People living with dementia described shame and stigma associated with policing of their sexuality and perception of being singled out for protection and intrusion into their lives. For informal carers (mostly wives), the theme of "what about me" emerged, demonstrating that for the long-term partnered, this is a couple's issue. DISCUSSION AND IMPLICATIONS: Practical implications of this study include: need to address ageism and ableism; human rights education for society and professionals; starting point of presumed capacity for sexual relations with consensus on how and when this should be rebutted; care homes' certification requirements should incorporate assessment of the relationship health of their residents.

Perioperative efficiency of sugammadex following minimally invasive gastric sleeve surgery: A superiority trial.

BACKGROUND: Studies have proposed that the routine use of sugammadex could provide perioperative time savings and a reduction in the incidence of postoperative nausea and vomiting. The purpose of this study was to test the effectiveness of sugammadex on perioperative times and on the incidences of adverse events when compared with the active control, neostigmine, for minimally invasive gastric sleeve surgery. METHODS: Following institutional review board approval, patient characteristics, type of primary neuromuscular blocking reversal agents, operating room discharge times, post-anaesthesia care unit recovery times, and incidences of and treatment for postoperative nausea and vomiting and orotracheal reintubation were the measures of interest. Superiority testing determined the between-group means differences of the reversal agents on the two perioperative time periods of interest. RESULTS: Superiority testing demonstrated no improvement of the two perioperative times with sugammadex. There was no clinical difference in the incidence of postoperative nausea and vomiting or in the number of antiemetic doses received in the post-anaesthesia care unit between the two groups. Finally, the two orotracheal reintubations in the post-anaesthesia care unit were in the sugammadex administered group. CONCLUSION: These results with sugammadex provide no perioperative time savings or reduce the incidence and treatment for postoperative nausea and vomiting in the post-anaesthesia care unit when compared with neostigmine.

A crisis awareness chain warning management model for patients with difficulties cooperating with magnetic resonance examinations.

OBJECTIVE: This case-control study tested a crisis awareness-based chain warning management model for patients with difficulties cooperating with magnetic resonance imaging (MRI) examinations. METHODS: All participants experienced difficulties cooperating with MRI examinations and underwent cranial magnetic resonance spectroscopy (MRS) and MRI at the same hospital in China. The control group (n = 1233) underwent examinations from January to June 2023 and received routine nursing care (pre-examination safety notification, instructions on cooperating during the examination, post-examination observation). A crisis awareness chain warning management model was implemented for the intervention group (n = 1352), who underwent examinations from July to December 2023. The groups were compared on average time for examination completion, quality of care and occurrence of complications. Data were collected using a self-devised data collection form. RESULTS: The average length of time to complete MRS and MRI was shorter for intervention group patients than for control group patients. The intervention group showed better pre-examination preparation, examination success rate, image quality attainment rate, and one-time examination success rate, and lower incidence of examination-related complications. CONCLUSION: This management model could increase MRI examination efficiency, improve quality of care, reduce complications and increase nurses' understanding of nursing continuity and crisis awareness.

Limitations of the Inter-Unit Reliability: A Set of Practical Examples.

Healthcare quality measures are statistics that serve to evaluate healthcare providers and identify those that need to improve their care. Before using these measures in clinical practice, developers and reviewers assess measure reliability, which describes the degree to which differences in the measure values reflect actual variation in healthcare quality, as opposed to random noise. The Inter-Unit Reliability (IUR) is a popular statistic for assessing reliability, and it describes the proportion of total variation in a measure that is attributable to between-provider variation. However, Kalbfleisch, He, Xia, and Li (2018) [Health Services and Outcomes Research Methodology, 18, 215-225] have argued that the IUR has a severe limitation in that some of the between-provider variation may be unrelated to quality of care. In this paper, we illustrate the practical implications of this limitation through several concrete examples. We show that certain best-practices in measure development, such as careful risk adjustment and exclusion of unstable measure values, can decrease the sample IUR value. These findings uncover potential negative consequences of discarding measures with IUR values below some arbitrary threshold.

Quality of care assessment for non-small cell lung cancer patients: transforming routine care data into a continuous improvement system.

PURPOSE: The complexity of cancer care requires planning and analysis to achieve the highest level of quality. We aim to measure the quality of care provided to patients with non-small cell lung cancer (NSCLC) using the data contained in the hospital's information systems, in order to establish a system of continuous quality improvement. METHODS/PATIENTS: Retrospective observational cohort study conducted in a university hospital in Spain, consecutively including all patients with NSCLC treated between 2016 and 2020. A total of 34 quality indicators were selected based on a literature review and clinical practice guideline recommendations, covering care processes, timeliness, and outcomes. Applying data science methods, an analysis algorithm, based on clinical guideline recommendations, was set up to integrate activity and administrative data extracted from the Electronic Patient Record along with clinical data from a lung cancer registry. RESULTS: Through data generated in routine practice, it has been feasible to reconstruct the therapeutic trajectory and automatically calculate quality indicators using an algorithm based on clinical practice guidelines. Process indicators revealed high adherence to guideline recommendations, and outcome indicators showed favorable survival rates compared to previous data. CONCLUSIONS: Our study proposes a methodology to take advantage of the data contained in hospital information sources, allowing feedback and repeated measurement over time, developing a tool to understand quality metrics in accordance with evidence-based recommendations, ultimately seeking a system of continuous improvement of the quality of health care.

Quality of care for chronic conditions: identifying specificities of quality aims based on scoping review and Delphi survey.

There is a growing need to implement high quality chronic care to address the global burden of chronic conditions. However, to our knowledge, there have been no systematic attempts to define and specify aims for chronic care quality. To address this gap, we conducted a scoping review and Delphi survey to establish and validate comprehensive specifications. The Institute of Medicine's (IOM) quality of care definition and aims were used as the foundation. We purposively selected articles from the scientific (n=48) and grey literature (n=26). We sought papers that acknowledged and unpacked the plurality of quality in chronic care and proposed or utilised frameworks, studied their implementation, or investigated at least two IOM quality care aims and implementation. Articles were analysed both deductively and inductively. The findings were validated through a Delphi survey involving 49 international chronic care experts with varied knowledge of, and experience in, low-and-middle-income countries. Considering the natural history of chronic conditions and the journey of a person with a chronic condition, we defined and identified the aims of chronic care quality. The six IOM aims apply with specific meanings. We identified a seventh aim, continuity, which relates to the issue of chronicity. The group endorsed our specifications and several participants gave contextualised interpretations and concrete examples. Chronic conditions pose specific challenges underscoring the relevance of tailoring quality of care aims. The next steps require a tailored definition and specific aims to improve, measure and assure the quality of chronic care.

Main findings: While previously defined aims of good-quality care may also apply to chronic care quality, the nature of chronic conditions and ensuing healthcare needs warrant specifications for good-quality chronic care.Added knowledge: Our proposed definition and specific aims are tailored to the natural history of chronic conditions, and can serve as a guide on determining what can be deemed as good-quality chronic care.Global health impact for policy and action: This work, developed to guide further work on designing purchasing instruments to improve quality of chronic care, particularly in low- and middle-income countries, may also be a source of inspiration for other interventions aiming at improving quality of chronic care.

Comparing methods for assessing the reliability of health care quality measures.

Quality measurement plays an increasing role in U.S. health care. Measures inform quality improvement efforts, public reporting of variations in quality of care across providers and hospitals, and high-stakes financial decisions. To be meaningful in these contexts, measures should be reliable and not heavily impacted by chance variations in sampling or measurement. Several different methods are used in practice by measure developers and endorsers to evaluate reliability; however, there is uncertainty and debate over differences between these methods and their interpretations. We review methods currently used in practice, pointing out differences that can lead to disparate reliability estimates. We compare estimates from 14 different methods in the case of two sets of mental health quality measures within a large health system. We find that estimates can differ substantially and that these discrepancies widen when sample size is reduced.

A Tale of Two Experiences: Navigating End of Life Care with a History of Incarceration.

BACKGROUND: The adverse health effects of incarceration are well-documented, impacting individuals throughout their life course. However, the influence of a history of incarceration on end-of-life (EOL) experiences remains unexplored. This study aims to examine how prior incarceration affects individuals' experiences and care needs as they approach the end of life. METHODS: Leveraging the Health and Retirement Study, we conducted secondary analyses on 1,710 individuals who participated between 2012-2018. Through retrospective cohort analysis, we explored the association between incarceration history and EOL care, focusing on pain and symptom burden. RESULTS: Analyses showed that individuals with a history of incarceration experienced significantly higher levels of pain (65% reported "moderate" or "severe" pain) compared to non-incarcerated individuals (50%; AOR = 1.45, 95% CI: 1.22-1.71, p < 0.001). Additionally, the symptom burden index revealed formerly incarcerated individuals had a higher average symptom score (2.8 vs. 2.1; ß = 0.7, 95% CI: 0.5-0.9, p < 0.001), indicating a greater range of symptoms in their final year of life. These disparities persisted after adjusting for demographic, health, and socioeconomic variables. CONCLUSION: This study reveals that a history of incarceration significantly impacts EOL experiences, with formerly incarcerated individuals facing higher levels of pain and a greater symptom burden compared to non-incarcerated individuals. This underscores the need for tailored palliative care to address the unique needs of this vulnerable population. This research highlights a critical area for intervention and calls for healthcare systems to adapt their practices to better serve those with incarceration histories.

[Rheumatological care in Germany : Memorandum of the German Society for Rheumatology and Clinical Immunology 2024]. / Rheumatologische Versorgung in Deutschland : Memorandum der Deutschen Gesellschaft für Rheumatologie und Klinische Immunologie 2024.

BACKGROUND: Rheumatology in Germany is facing major challenges. The need for rheumatological care is increasing and can no longer be met in some regions for capacity reasons. Too many people with an inflammatory rheumatic disease (IRD) have to forego appropriate care or receive it too late. The 4th new edition of the memorandum of the German Society for Rheumatology and Clinical Immunology (DGRh) provides information on rheumatological care in Germany. It was produced under the leadership of the DGRh together with the Professional Association of German Rheumatologists (BDRh), the Association of Acute Rheumatology Clinics (VRA), the German Rheumatism League (DRL) and the German Rheumatism Research Center (DRFZ). METHODS: The memorandum describes the current state and development of the following areas: number of people with IRD, outpatient, inpatient and rehabilitative care structures, number of specialists in rheumatology, education and training, quality of care, health economic aspects and digital care concepts. Proposals for health policy measures to safeguard rheumatological care are presented. RESULTS: Prevalence: approximately 1.8 million adults in Germany have an IRD. The prevalence is increasing, due to changes in the demographic structure of the population, improved diagnostics, treatment and longer survival. Care structures: outpatient specialist care (ASV) for rheumatic diseases is developing as a cross-sectoral care model for hospital outpatient clinics and rheumatology practices. Hospitals have been able to be certified as rheumatology centers since 2020, which enables structural developments. Specialists in rheumatology: as of 31 December 2023, there were 1164 specialists in rheumatology working in Germany. This included 715 physicians accredited to work in practices for national health assurance patients, 39% of whom were employees. In hospitals, 39% of doctors worked part-time. At least 2 rheumatology specialists per 100,000 adults are needed, i.e. around 1400, in order to provide adequate care. This means that there is a shortage of around 700 rheumatology specialists in the outpatient sector alone. Of all working specialists, 30% are currently aged 60 years old and over. Medical training: only 10 out of 38 (26%) state universities have an independent chair in rheumatology. In addition, 11 rheumatology departments are subordinate to a nonrheumatology chair. In the rheumatology-integration into student training (RISA) III study, only 16 out of 36 faculties fulfilled the recommended minimum number of compulsory hours of student rheumatology teaching. Continuing education in rheumatology: the annual postgraduate training qualifications do not cover the demand for rheumatology specialists, which is additionally increasing due to intensified workload, reduced capacities through retirement, and part-time work. Quality of care: since the introduction of highly effective medication patients with IRD have a much better chance of achieving remission of their disease. With early initiation of targeted therapy, the lives of many patients are hardly restricted at all: however, waiting times for a first rheumatological visit often last more than 3 months. Quality target is a first consultation within the first 6 weeks after the onset of symptoms. Models for early consultation, delegation of medical services, structured patient training and digital care concepts have been positively evaluated but are not covered financially. COSTS: the total annual costs for inflammatory joint diseases alone amount to around 3 billion euros. The direct costs have significantly risen since the introduction of biologics, while the indirect costs for sick leave, disability and hospitalization have fallen. CONCLUSION: The core demands of this memorandum are a significant and sustainable increase in the number of further training positions in the outpatient and inpatient sector, the creation of chairs or at least independent departments for rheumatology at all universities and the further implementation of new and cross-sectoral forms of care. This will ensure modern needs-based rheumatological care for all patients in the future.

Preparing Children for Invasive Medical Cancer Treatment with "My Logbook": Preliminary Results of a Pilot Study.

Pediatric cancer is one of the most burdensome chronic diseases, necessitating a variety of severe medical interventions. As a result, the disease and its treatment cause numerous acute and long-term medical, psychological, and socioeconomic strains for young patients and their families. Therefore, psychosocial care using evidence-based interventions (EBIs) before, during, and after medical treatments is essential to ensure that patients receive adequate information and to minimize the adverse emotional and psychosocial impacts such as insecurity, fear, and shame. The present study reports the first promising results of applying cancer-specific psychosocial methods developed in the quality improvement project "My Logbook." The four assessed tools are specifically designed to adequately prepare pediatric cancer patients for surgery, chemotherapy, radiotherapy, and stem cell transplantation. Self and proxy ratings were used to assess the patients' subjective knowledge and emotional well-being before and after each intervention session. The results showed that patient-centered interventions using various creative and developmentally adapted methodologies (e.g., psychoeducation, crafting, games) have the potential to effectively enhance patient health literacy (V = 120.5, p < .001, r = 0.33) and well-being as manifested in more positive (slope = 0.121, p = .016) and less negative (slope = - 0.350, p < .001) or neutral emotions (slope = - 0.202, p = .002). These findings highlight the importance of developing and implementing psychosocial tools in pediatric oncology to prevent psychological overload and negative emotions and to increase subjective control beliefs, autonomy, and empowerment. Moreover, the effective application and systematic evaluation of evidence-based psychosocial tools can facilitate the establishment of standardized guidelines for psychosocial care in pediatric oncology. Thereby, the final goal is to ensure the quality of care and to use education to increase the quality of life for all pediatric cancer patients.Trial registration: ClinicalTrials.gov Identifier: NCT04474678 (July 17, 2020).

Effects of a Digital Care Pathway for Multiple Sclerosis: Observational Study.

BACKGROUND: Helsinki University Hospital has developed a digital care pathway (DCP) for people with multiple sclerosis (MS) to improve the care quality. DCP was designed for especially newly diagnosed patients to support adaptation to a chronic disease. OBJECTIVE: This study investigated the MS DCP user behavior and its impact on patient education-mediated changes in health care use, patient-perceived impact of MS on psychological and physical functional health, and patient satisfaction. METHODS: We collected data from the service launch in March 2020 until the end of 2022 (observation period). The number of users, user logins, and their timing and messages sent were collected. The association of the DCP on health care use was studied in a case-control setting in which patients were allowed to freely select whether they wanted to use the service (DCP group n=63) or not (control group n=112). The number of physical and remote appointments either to a doctor, nurse, or other services were considered in addition to emergency department visits and inpatient days. The follow-up time was 1 year (study period). Furthermore, a subgroup of 36 patients was recruited to fill out surveys on net promoter score (NPS) at 3, 6, and 12 months, and their physical and psychological functional health (Multiple Sclerosis Impact Scale) at 0, 3, 6, and 12 months. RESULTS: During the observation period, a total of 225 patients had the option to use the service, out of whom 79.1% (178/225) logged into the service. On average, a user of the DCP sent 6.8 messages and logged on 7.4 times, with 72.29% (1182/1635) of logins taking place within 1 year of initiating the service. In case-control cohorts, no statistically significant differences between the groups were found for physical doctors' appointments, remote doctors' contacts, physical nurse appointments, remote nurse contacts, emergency department visits, or inpatient days. However, the MS DCP was associated with a 2.05 (SD 0.48) visit increase in other services, within 1 year from diagnosis. In the prospective DCP-cohort, no clinically significant change was observed in the physical functional health between the 0 and 12-month marks, but psychological functional health was improved between 3 and 6 months. Patient satisfaction improved from the NPS index of 21 (favorable) at the 3-month mark to the NPS index of 63 (excellent) at the 12-month mark. CONCLUSIONS: The MS DCP has been used by a majority of the people with MS as a complementary service to regular operations, and we find high satisfaction with the service. Psychological health was enhanced during the use of MS DCP. Our results indicate that DCPs hold great promise for managing chronic conditions such as MS. Future studies should explore the potential of DCPs in different health care settings and patient subgroups.

Interventions and impact of pharmacist-delivered services in perioperative setting on clinically important outcomes: a systematic review and meta-analysis.

Background: The perioperative arena is a unique and challenging environment that requires coordination of the complex processes and involvement of the entire care team. Pharmacists' scope of practice has been evolving to be patient-centered and to expand to variety of settings including perioperative settings. Objectives: To critically appraise, synthesize, and present the available evidence of the characteristics and impact of pharmacist-led interventions on clinically important outcomes in the perioperative settings. Design: A systematic review and meta-analysis. Methods: We searched PubMed, Embase, and CINAHL from index inception to September 2023. Included studies compared the effectiveness of pharmacist-led interventions on clinically important outcomes (e.g. length of stay, readmission) compared to usual care in perioperative settings. Two independent reviewers extracted the data using the DEPICT-2 (Descriptive Elements of Pharmacist Intervention Characterization Tool) and undertook quality assessment using the Crowe Critical Appraisal (CCAT). A random-effect model was used to estimate the overall effect [odds ratio (OR) for dichotomous and standard mean difference (SMD) for continuous data] with 95% confidence intervals (CIs). Results: Twenty-five studies were eligible, 20 (80%) had uncontrolled study design. Most interventions were multicomponent and continuous over the perioperative period. The intervention components included clinical pharmacy services (e.g. medication management/optimization, medication reconciliation, discharge counseling) and education of healthcare professionals. While some studies provided a minor description in regards to the intervention development and processes, only one study reported a theoretical underpinning to intervention development. Pooled analyses showed a significant impact of pharmacist care compared to usual care on length of stay (11 studies; SMD -0.09; 95% CI -0.49 to -0.15) and all-cause readmissions (8 studies; OR 0.60; 95% CI 0.39-0.91). The majority of included studies (n = 21; 84%) were of moderate quality. Conclusion: Pharmacist-led interventions are effective at improving clinically important outcomes in the perioperative setting; however, most studies were of moderate quality. Studies lacked the utilization of theory to develop interventions; therefore, it is not clear whether theory-derived interventions are more effective than those without a theoretical element. Future research should prioritize the development and evaluation of multifaceted theory-informed pharmacist interventions that target the whole surgical care pathway.

The impact of pharmacist activities on clinical outcomes in perioperative settings Why was the study done? The time around the surgery imposes significant risks to patient's health. While technical aspects of a procedure are important, it should be combined with the provision of optimal healthcare quality to increase the likelihood of desired clinical outcomes. Pharmacists are effective healthcare team members who have the potential to improve patient's outcomes in the perioperative settings. It is hence imperative to explore the roles and impact of clinical pharmacists in these settings. Thus far, there is no synthesis of literature regarding the pharmacist roles and effectiveness in the perioperative setting. What did the researchers do? We aimed to summarize and appraise the quality of evidence on the characteristics and impact of pharmacist activities on clinical outcomes in the perioperative settings. Three library databases were examined to identify studies eligible for inclusion. Two authors extracted data and assessed the quality of included studies. Statistical analysis was used to look at the success of the pharmacist interventions on different endpoints. What did the researchers find? A total of 25 studies were included. Most pharmacist activities consisted of multiple components (such as medication management and educating other healthcare providers) and spanned the whole perioperative journey. The analysis of included studies showed that pharmacist activities reduced the elapsed time in hospital and the number of times a patient winds up going back to a hospital after discharge. Most studies did not discuss the methods adopted to develop pharmacist activities. What do the findings mean? A number of pharmacist activity types were shown to be successful in reducing the duration of hospitalization and readmission episodes. New directions for future research should investigate the development of pharmacist-led interventions in terms of structure and processes to ensure the reproducibility of these interventions.

Evaluating the Population-Based Usage and Benefit of Digitally Collected Patient-Reported Outcomes and Experiences in Patients With Chronic Diseases: The PROMchronic Study Protocol.

BACKGROUND: Chronic diseases are associated with a high disease burden. Under- and overprovision of care as well as quality variation between health care providers persists, while current quality indicators rarely capture the patients' perspective. Capturing patient-reported outcome measures (PROMs) as well as patient-reported experience measures (PREMs) is becoming more and more important to identify gaps in care provision, prioritize services most valuable to patients, and aid patients' self-management. OBJECTIVE: This study aims to measure the potential benefits and effectiveness of using electronic patient-reported outcome measures (ePROMs) and electronic patient-reported experience measures in a structured and population-based manner to enhance health care for chronic disease patients in Germany. METHODS: This prospective cohort study aims to evaluate the potential benefits of PROM usage in patients with chronic diseases. We evaluate whether (1) digitally collected PROMs and PREMs can be used for health system performance assessment by generating a representative response of chronically diseased individuals with asthma, chronic obstructive pulmonary disease, diabetes, and coronary artery disease across Germany, and (2) based on the PROMs and PREMs, low-value care can be identified. As patient-reported outcomes (PROs) are rarely presented back to patients, (3) this study also examines patients' reactions to their PROM scores in the form of digital PRO feedback. For these purposes, randomly selected patients from a nationwide German insurer are digitally surveyed with generic and disease-specific PROMs and PREMs, as well as additional questions on their health-related behavior, 4 times over 1 year. Individual PRO feedback is presented back to patients longitudinally and compared to a peer group after each survey period. Patient-reported data is linked with health insurance data. Response rates, changes in health and experience outcomes over time, self-reported changes in health behavior, and health care system usage will be analyzed. RESULTS: The PROMchronic study explores the usage of PROMs in patients with chronic diseases. Data collection began in October 2023, after the initial invitation letter. All the 200,000 potential patients have been invited to participate in the study. Data have not yet been analyzed. Publication of the interim results is planned for the autumn of 2024, and the results are planned to be published in 2025. CONCLUSIONS: We aim to fill the research gap on the population-based usage of PROMs and PREMs in patients with chronic diseases and add to the current understanding of PROM data-sharing with patients. The study's results can thereby inform whether a health care system-wide approach to collecting PROMs and PREMs can be used to identify low-value care, assess quality variation within and across chronic conditions, and determine whether PRO feedback is helpful and associated with any changes in patients' health behaviors. TRIAL REGISTRATION: German Clinical Trials Register DRKS00031656; https://drks.de/search/en/trial/DRKS00031656. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/56487.

The Icelandic Heart Failure Registry-A nationwide assessment tool for HF care and intervention in HF treatment.

INTRODUCTION: The incidence of heart failure (HF) is increasing, largely because populations are both ageing and growing. Most clinical HF treatment trials are conducted on selected cohorts, only a few of which include elderly patients, among whom HF is common. HF registries can include all HF patients, independent of age or comorbidity profile, and thus reflect reality in healthcare management. METHODS: The Icelandic Heart Failure Registry (IHFR) was created in the autumn of 2019 and has operated since 1 January 2020. Based on the Swedish Heart Failure Registry (SwedeHF), it quickly acquired several extensions. All patients admitted for HF to the Department of Cardiology (DC) at Landspítali - The National University Hospital of Iceland are included. Several variables are collected, including the aetiology of HF, comorbidities, clinical assessment at admission, blood tests, imaging results, treatment given and medical therapy at discharge. RESULTS: During the 3 years from 2020 to 2022, the DC admitted 1890 patients. As some were readmitted during the study period, the true total was 2384 admissions. Because the IHFR 2023 edition includes 327 variables, automation of many of them is imperative for data collection. CONCLUSION: HF is a heterogenous disease with numerous underlying factors. HF management differs among HF phenotypes. A registry can serve as an unbiased indicator of care quality and has the potential to be studied in the future to assess the long-term effects of HF treatment. A registry like the IHFR, therefore, can impact the treatment of all patients recorded in it, reduce the rate of readmissions and even optimize HF management costs.

Health-related quality of life is an independent predictor of mortality and hospitalisations in transthyretin amyloid cardiomyopathy: a prospective cohort study.

PURPOSE: Transthyretin amyloid cardiomyopathy (ATTR-CM) is associated with severely impaired health-related quality of life (HRQL). HRQL is an independent predictor of outcome in heart failure (HF), but data on patients with ATTR-CM is scarce. This study therefore aims to evaluate the association of HRQL with outcome in ATTR-CM. METHODS: Patients from our prospective ATTR-CM registry were assessed using the Kansas City cardiomyopathy questionnaire (KCCQ), the Minnesota living with HF questionnaire (MLHFQ), and the EuroQol five dimensions questionnaire (EQ-5D). Cox regression analysis was utilised to assess the impact of HRQL on all-cause mortality. RESULTS: 167 patients [80 years; interquartile range (IQR): 76-84; 80.8% male] were followed for a median of 27.6 (IQR: 9.7-41.8) months. The primary endpoint of all-cause mortality was met by 43 (25.7%) patients after a median period of 16.2 (IQR: 9.1-28.1) months. In a univariate Cox regression for mortality, a 10-point change in the KCCQ implied a hazard ratio (HR) of 0.815 [95%-confidence interval (CI): 0.725-0.916; p = 0.001], in the EQ-5D VAS of 0.764 (95%-CI: 0.656-0.889; p < 0.001), and 1.163 (95%-CI: 1.114-1.433; p < 0.001) in the MLHFQ. After adjustment for established biomarkers of HF, all-cause mortality was predicted independently by the EQ-5D VAS (HR: 0.8; 95%-CI: 0.649-0.986; p = 0.037; per 10 points) and the MLHFQ (HR: 1.228; 95%-CI: 1.035-1.458; p = 0.019; per 10 points). CONCLUSION: HRQL is a predictor of outcome in ATTR-CM. The EQ-5D VAS and the MLHFQ predict survival independent of biomarkers of HF.

Patients with transthyretin amyloid cardiomyopathy, a condition causing heart failure and mostly seen in the elderly, suffer from shortness of breath and reduced maximum physical performance. Disease assessment is currently based on blood analysis for markers of heart failure. However, standardised patient questionnaires also allow to estimate disease severity. In this study, we analyse different standardised patient questionnaires for their ability to predict adverse events including death and heart failure-related hospitalisations. The analysis demonstrates that an increase of ten points in the Kansas City Cardiomyopathy questionnaire, a tool specifically designed for patients with heart failure, implies a reduction of mortality risk of close to 20%. Interestingly, even the very simple visual analogue scale, a quality-of-life measurement tool which asks the patient to rate their health on a scale from zero (worst) to one hundred (best) has demonstrated remarkable predictive utility. An increase of ten points on this scale resulted in a reduction of risk for death from any cause of almost a quarter. This analysis suggests that standardised patient questionnaires for the assessment of quality of life may play an important role in the evaluation of patients with transthyretin amyloid cardiomyopathy and estimation of prognosis.

Are quality of care instruments inclusive of older people living with dementia? A scoping review in long-term care settings.

More than half of older people in long-term care facilities have dementia. Little is currently known about the methods and instruments which can be used to capture the perspectives of older people, including those with dementia, regarding the quality of care provided in such facilities. The main aims of this scoping review were two-fold. Firstly, to identify quality of care instruments that have been applied in long-term care settings. Secondly, to evaluate how these instruments have been developed and validated, particularly in terms of their applicability among older people with dementia. Seven databases (Medline, Web of Science, Scopus, ProQuest, Ageline, CINHAL and google scholar) were searched for relevant literature without any date limit. We used quality criteria adapted from COSMIN (Consensus-based Standards for the selection of health status Measurement Instruments) guidelines to assess the psychometric properties of the instruments. The search identified 16 quality of care instruments which had been used in long-term care settings. Of which, two (12.5%) were specifically designed for older people with dementia, and three instruments (18.7%) were modified for use with older people with mild to moderate dementia. A variety of methods were used to develop the identified instruments including literature reviews, qualitative interviews, expert panel reviews, pre-testing and piloting with older people. None of the identified instruments had been subjected to comprehensive psychometric assessment. Most instruments for assessing quality of care in long term care settings lack alternative communication techniques tailored to people with dementia. This review highlights the need for more rigorous psychometric testing of existing instruments for assessing quality of care in long-term care settings. Several existing measures show promise and may be taken forward for further testing and development for widespread application with older people, including those living with dementia, in long term care settings.