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Background: Hyperglycemia-associated micro- and macro-vascular complications remain the leading cause of premature morbidity and mortality among the diabetic population worldwide. Poor glycemic control due to clinical inertia towards insulin treatment is a major cause behind the development of diabetic complications. In this paper, we analyze different strategies of insulin treatment initialization and titration practiced in India. Methods: The response of 367 healthcare professionals (HCPs) across the country was recorded based on a survey on demographics, treatment regimens, and patient behavior. For analysis, the responses from HCPs were segregated into six regions, north, south, east, west, and central, covering the entire country. Results: The survey revealed that 59.1% HCPs preferred using three oral anti-diabetic drugs (OADs) before starting insulin therapy while 12.5% initiated insulin as the last option after trying all available OADs. Besides, 61% HCPs across India considered initiating insulin in type 2 diabetes mellitus (T2DM) patients when the patients (i) failed to achieve glycemic targets with current OADs, or (ii) could not tolerate OADs, or (iii) required a more flexible therapy. In T2DM patients, 52.9% HCPs chose basal only insulin during initiation. In comparison, 63.8% HCPs used basal bolus while initiating insulin in type 1 DM (T1DM) patients. Pan-India, 53.4% HCPs preferred analogue premix while 46.6% HCPs opted for human premix. Next, 98.9% HCPs counselled patients about the risk of hypoglycemia upon initiation of insulin. Conclusion: This survey outlines an urgent need of reducing the clinical inertia against insulin initialization in Indian settings. [ABSTRACT FROM AUTHOR]

This paper discusses the objective reasons for the growing need for qualified medical services, especially in the context of pandemics, wars, disasters, and shortages of medical staff. The directions of development of robotics in medicine are analyzed, leading to the conclusion that the use of intelligent collaborative (i.e., interacting with humans) robotics in medicine is possible and appropriate. Robot assistants can perform many auxiliary operations, which will help relieve the workload of middle and junior medical staff, and, if necessary, replace them when performing such operations. The article outlines some of the main directions in which the authors believe the development of collaborative medical robotics should occur. [ABSTRACT FROM AUTHOR]

Background: The integration of patient-centered care (PCC) and value-based healthcare (VBHC) principles, emphasizing personalized, responsive care and cost efficiency, is crucial in modern healthcare. Despite advocation from the International Consortium for Health Outcomes Measurement (ICHOM) for the global adoption of these principles through patient-reported measures (PRMs), their implementation, especially the pregnancy and childbirth (PCB) set, remains limited in maternity care. This study focuses on understanding the optimal organizational entity for integrating standard ICHOM-PCB-PRMs into routine maternity care in Finland. It aims to clarify the distribution of tasks among stakeholders and gather Finnish maternity healthcare professionals' perspectives on organizational responsibility in PRM collection. The emphasis was on identifying the optimal organizational framework for managing PRMs in maternity care. Results: A total of 66 maternity healthcare professionals participated in the study, reaching a consensus that public maternity care centers in Finland should be the primary entity responsible for managing PRMs in the maternity sector. Key aspects such as confidence with the role as a mother, maternal confidence with breastfeeding, and satisfaction with the result of care were identified as crucial and should be inquired about in both public maternity care centers and hospital maternity wards. The findings highlight the importance of comprehensive and consistent attention to these PRMs across public maternity care centers and hospital maternity settings to ensure holistic and effective maternal care. Conclusions: The study highlights the central role of public maternity care centers in the collection and management of PRMs within Finnish maternity care, as agreed upon by the professional consensus. It underscores the importance of a consistent and holistic approach to PRM inquiry across different care settings to enhance the quality and effectiveness of maternity care. This finding is crucial for policymakers and healthcare practitioners, suggesting that reinforcing the collaborative efforts between public maternity care centers and hospital maternity wards is vital for a patient-centric, efficient healthcare system. Aligning with PCC and VBHC principles, this approach aims to improve healthcare outcomes for pregnant and postpartum women in Finland, emphasizing the need for a unified strategy in managing maternity care. [ABSTRACT FROM AUTHOR]

Research and public interest in psychedelic-assisted psychotherapy (PAP) are growing. This study investigated attitudes toward psychedelics among a diverse and multinational sample of psychiatrists currently working in Europe. We conducted an anonymous, web-based survey consisting of demographic information, a test of basic knowledge on psychedelics, and the previously validated 20-item Attitudes on Psychedelics Questionnaire (APQ), which was validated for the first time in English within this sample. We included N = 419 participants from 33 countries in the study. One-third of participants (34%) reported past use of psychedelics. The APQ sub-scale with the highest score was Openness to Psychedelics, while Risk Assessment of Psychedelics was rated lowest. Regression modelling, explaining 31.3% of variance in APQ scores, showed that younger male psychiatrists who identified as spiritual, were better at recognizing and classifying substances as psychedelics and had previously used psychedelics had more positive attitudes on psychedelics. No professional variables besides self-reported previous experience with PAP or psychedelic research predicted APQ scores. European psychiatrists, therefore, show a general openness to psychedelics and PAP, but are concerned by the potential risks associated with them. Our findings overall suggest that psychedelics are a subject where it is difficult to remain impartial. Protocol registration: The study was pre-registered at the Open Science Framework (available online at https://osf.io/upkv3). [ABSTRACT FROM AUTHOR]

Background: The availability of consistent psychological therapy within acute inpatient psychiatric units and the integration of psychologists into multi-disciplinary inpatient teams is a newly evolving development in mental healthcare. To the authors' knowledge, there has been no examination of the inpatient multi-disciplinary team's (MDT) perspective on how psychology can be best integrated into the team in Lebanon. This study aims to explore the perceptions of different medical personnel working within an MDT on the role of psychologists in an acute psychiatry inpatient unit in Lebanon. It is qualitative in nature, using a semi-structured interview design. The overarching aim of this study is to assess and identify the gaps in the MDT's insight into the various responsibilities of psychologists which may result in more efficient collaborative teamwork and hence overall patient care. Results: Four primary themes are identified from the findings of our study. The themes highlighted the value of a multidisciplinary approach to patient care, the vital roles that psychologists play in direct clinical work and supporting other staff members, important factors related to patient-centered psychological care, limitations that exist in the inpatient unit, and suggestions for improvement. Conclusion: This study served as a baseline for more research and development of psychological services in the psychiatric inpatient units of Lebanon, emphasizing the integral role of psychology in patient care. [ABSTRACT FROM AUTHOR]

In recent decades, opioid overdoses have increased dramatically in the United States and peer countries. Given this, emergency medicine physicians have become adept in reversing and managing complications of acute overdose. However, many remain unfamiliar with initiating medication for opioid use disorder such as buprenorphine, a high-affinity partial opioid agonist. Emergency department-based buprenorphine initiation is supported by a significant body of literature demonstrating a marked reduction in mortality in addition to increased engagement in care. Buprenorphine initiation is also safe, given both the pharmacologic properties of buprenorphine that reduce the risk of diversion or recreational use, and previously published literature demonstrating low rates of respiratory depression, sedation, and precipitated withdrawal. Further, barriers to emergency department-based initiation have been reduced in recent years, with publicly available dosing and up-titration schedules, numerous publications overviewing best practices for managing precipitated withdrawal, and removal of USA policies previously restricting patient access and provider prescribing, with the removal of the X-waiver via the Medication Access and Training Expansion Act. Despite reductions in barriers, buprenorphine initiation in the emergency room remains underutilized. Poor uptake has been attributed to numerous individual and systemic barriers, including inadequate education, provider stigma, and insufficient access to outpatient follow-up care. The following practice innovation aims to summarize previously published evidence-based best practices and provide an accessible, user-friendly initiation guide to increase emergency physician comfortability with buprenorphine initiation going forward. [ABSTRACT FROM AUTHOR]

One of the major barriers to using large language models (LLMs) in medicine is the perception they use uninterpretable methods to make clinical decisions that are inherently different from the cognitive processes of clinicians. In this manuscript we develop diagnostic reasoning prompts to study whether LLMs can imitate clinical reasoning while accurately forming a diagnosis. We find that GPT-4 can be prompted to mimic the common clinical reasoning processes of clinicians without sacrificing diagnostic accuracy. This is significant because an LLM that can imitate clinical reasoning to provide an interpretable rationale offers physicians a means to evaluate whether an LLMs response is likely correct and can be trusted for patient care. Prompting methods that use diagnostic reasoning have the potential to mitigate the "black box" limitations of LLMs, bringing them one step closer to safe and effective use in medicine. [ABSTRACT FROM AUTHOR]

Background: PROs are valuable tools in clinical care to capture patients' perspectives of their health, symptoms and quality of life. However the COVID-19 pandemic has had profound impacts on all aspects of life, in particular healthcare and research. This study explores the views of UK and Irish health professionals, third sector and pharmaceutical industry representatives and academic researchers on the impact of COVID-19 on PRO collection, use and development in clinical practice. Methods: A volunteer sample took part in a 10 question cross sectional qualitative survey, on the impact of COVID-19, administered online via Qualtrics. Demographic data was descriptively analysed, and the qualitative free text response data was subject to thematic analysis and summarised within the Strengths, Weaknesses, Opportunities and Threats (SWOT) framework. Results: Forty nine participants took part located in a range of UK settings and professions. Participants highlighted staff strengths during the pandemic including colleagues' flexibility and ability to work collaboratively and the adoption of novel communication tools. Weaknesses were a lack of staff capacity to continue or start PRO projects and insufficient digital infrastructure to continue studies online. Opportunities included the added interest in PROs as useful outcomes, the value of electronic PROs for staff and patients particularly in relation to integration into systems and the electronic patient records. However, these opportunities came with an understanding that digital exclusion may be an issue for patient groups. Threats identified included that the majority of PRO research was stopped or delayed and funding streams were cut. Conclusions: Although most PRO research was on hold during the pandemic, the consensus from participants was that PROs as meaningful outcomes were valued more than ever. From the opportunities afforded by the pandemic the development of electronic PROs and their integration into electronic patient record systems and clinical practice could be a lasting legacy from the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

Background: Erythropoietic protoporphyria is a rare, inherited disorder presenting in early childhood with severe, painful phototoxicity. EPP has significant impacts on health-related quality of life, though there is variable disease severity. Accurately capturing how much time individuals with EPP can spend outdoors before they develop symptoms is critical to understanding HRQoL and measuring therapeutic response. Therefore, the goal of this study was to develop a comprehensive and content valid sun exposure diary to assess the efficacy of new therapies in individuals with EPP. Methods: Qualitative interviews were conducted with adult and adolescent EPP participants, as well as five clinical experts, to obtain their input on the content of an existing sun exposure diary. Revisions to the diary were made based on evidence generated in cognitive debriefing interviews analyzed in eight consecutive groups of EPP participant. Results: Interviews were conducted with 17 adults and 6 adolescents with EPP. The average age of adults was 40 years and of adolescents was 14 years. Clinical experts thought the original diary needed clarification on the description of symptoms, how time outdoors was captured, and the distinction between direct vs. indirect sunlight. Participants with EPP also noted these items needed revision, and that the distinction between prodromal symptoms and full reaction symptoms should be clarified. In the final diary version, participants with EPP found most items to be clear and easy to complete/think about. Seventy-six percent of participants (13/17) asked thought the diary was easy to complete. The remainder thought the majority of the diary was easy to complete with the exception of select questions. Conclusions: Evaluating a new treatment for EPP requires accurately capturing time in sunlight and symptoms in this unique disorder. The newly developed sun exposure diary is content valid and can be used to assess important aspects of symptoms and daily life and therefore evaluate clinically meaningful therapeutic response. [ABSTRACT FROM AUTHOR]

2021;2015-7. 3 Brummett A, Campo-Engelstein L. Conscientious objection and LGBTQ discrimination in the United States. Throughout the past year, a number of different states have introduced bills aimed at expanding the right of healthcare providers to object to providing certain treatments on religious or moral grounds, including over 16 states according to the American Civil Liberties Union.[1] In their paper, "Identifying and Addressing Barriers to Transgender Healthcare: Where We Are and What We Need to Do About It", Warner and Mehta highlighted the anticipation of potential discrimination or mistreatment being a barrier to care for transgender and gender non-conforming patients.[2] We hope to validate the concern for potential discrimination and highlight the unprecedented legislation of discrimination across the country under the guise of religious and moral conscience. [Extracted from the article]

Background: There is growing international momentum for standardising patient outcome assessment and using patient-reported outcome measures (PROMs) to capture outcomes that matter to patients. The International Consortium for Health Outcomes Measurement (ICHOM) Standard Sets were developed to capture the outcomes of care for costly conditions including osteoarthritis. This study evaluated the feasibility of implementing the ICHOM Standard Set for Hip and Knee Osteoarthritis in 'real world' public and private hospital settings. Methods: A mixed-methods design was used to capture comprehensive data on patient outcomes, implementation costs, and the implementation experiences of patients, clinicians and administrative staff. The ICHOM Standard Set was implemented at two hospital sites (1 public, 1 private) in May 2016. Patients undergoing primary hip or knee replacement for osteoarthritis were recruited from pre-admission clinics and a private orthopaedic clinic. Baseline Standard Set data were collected before surgery and at pre-determined post-operative timepoints. Data on the costs of Standard Set implementation were also collected. Semi-structured interviews were conducted with key stakeholders (n = 15) to evaluate the ease of implementation, and explore barriers and enablers to implementation and sustainability. Results: The cost of Standard Set implementation and ongoing data collection for 17 months totalled $AUD94,955. Preference data (collected prior to completing the Standard Set) revealed that most participants preferred paper-based (83%) or web-based questionnaire completion (14%), with only a small proportion preferring iPad-based completion (3%). Several PROMs within the Standard Set were responsive to change (effect size range 0.19–0.85), with significant improvements in important health outcomes identified 6 weeks after surgery. Patient interviews showed a variable understanding of why patient-reported data collection is undertaken; however, patients perceived that PROMs provided relevant information to treating clinicians, and that the burden of questionnaire completion was minimal. Staff interviews revealed that PROMs are considered valuable, dedicated personnel are required to support data collection, gaps in information technology resources must be addressed, and that the Standard Set offers benefits beyond what currently-used measures provide. Conclusion: The Standard Set can be feasibly implemented in hospital settings, but with important caveats around staffing and technical support, consideration of patient preferences, and promotion of active clinician engagement. [ABSTRACT FROM AUTHOR]

Although international research has defined best-practice intervention for children from vulnerable families as integrated and comprehensive, limited implementation and longitudinal evaluation of this approach has been conducted. The Spilstead Model (SM) of early years milieu intervention provides a uniquely integrated one stop shop model of care incorporating a comprehensive range of best-practice programs within a trauma-informed approach. Results from an initial evaluation involving 23 families (mean child age 3.7 years) indicated large effect size improvements 12 months post entry in family functioning as well as child development and emotional wellbeing (ES 0.8 -1.46, p < 0.001). This study aimed to evaluate the sustainability of these outcomes for both children and families via follow-up of the initial study co-hort 10 years post the initial evaluation. The study targeted families who participated in the original evaluation. Clinician and parent-rated adolescent measures paralleled the original assessments of parent, child and family functioning. Qualitative evaluation was also conducted via a semi-structured interview with parents. 83% of the original sample participated. Mean youth age was 13.2 years. Results indicated sustained improvements in parent-child relationship, child-wellbeing and reduction of parent stress with large effect size (1.14 – 1.92 p < 0.001). On average 73% of the adolescents scored within the normal range on each measure of functioning. Few had repeated school grades or been suspended. None had been arrested. Emerging themes from the qualitative evaluation confirmed the value of the integrated model. The results further support the value of the one stop shop Spilstead Model and have the potential to inform international policy and practice. [ABSTRACT FROM AUTHOR]

Background: Practitioner and family experiences of pediatric re/habilitation can be inequitable. The Young Children's Participation and Environment Measure (YC-PEM) is an evidence-based and promising electronic patient-reported outcome measure that was designed with and for caregivers for research and practice. This study examined historically minoritized caregivers' responses to revised YC-PEM content modifications and their perspectives on core intelligent virtual agent functionality needed to improve its reach for equitable service design. Methods: Caregivers were recruited during a routine early intervention (EI) service visit and met five inclusion criteria: (1) were 18 + years old; (2) identified as the parent or legal guardian of a child 0–3 years old enrolled in EI services for 3 + months; (3) read, wrote, and spoke English; (4) had Internet and telephone access; and (5) identified as a parent or legal guardian of a Black, non-Hispanic child or as publicly insured. Three rounds of semi-structured cognitive interviews (55–90 min each) used videoconferencing to gather caregiver feedback on their responses to select content modifications while completing YC-PEM, and their ideas for core intelligent virtual agent functionality. Interviews were transcribed verbatim, cross-checked for accuracy, and deductively and inductively content analyzed by multiple staff in three rounds. Results: Eight Black, non-Hispanic caregivers from a single urban EI catchment and with diverse income levels (Mdn = $15,001–20,000) were enrolled, with children (M = 21.2 months, SD = 7.73) enrolled in EI. Caregivers proposed three ways to improve comprehension (clarify item wording, remove or simplify terms, add item examples). Environmental item edits prompted caregivers to share how they relate and respond to experiences with interpersonal and institutional discrimination impacting participation. Caregivers characterized three core functions of a virtual agent to strengthen YC-PEM navigation (read question aloud, visual and verbal prompts, more examples and/or definitions). Conclusions: Results indicate four ways that YC-PEM content will be modified to strengthen how providers screen for unmet participation needs and determinants to design pediatric re/habilitation services that are responsive to family priorities. Results also motivate the need for user-centered design of an intelligent virtual agent to strengthen user navigation, prior to undertaking a community-based pragmatic trial of its implementation for equitable practice. [ABSTRACT FROM AUTHOR]

Background: Patient-reported outcome measures (PROMs) provide a measure of self-perceived health status or health-related quality of life. They have been used to support provider-patient decisions, healthcare delivery, and value-based healthcare models. A barrier to routine collection of PROMs is the perception that PROMs lack clinical utility. As such, it is important to establish clinicians' acceptability of the PROM prior to large-scale implementation. This study explored the acceptability of the routine use and collection of a generic PROM in healthcare services from the perspective of healthcare staff. Methods: Individual semi-structured interviews were completed from September 2020 to March 2021 with 26 staff from two multi-disciplinary community healthcare services in Melbourne, Australia. Interviews explored their experiences of using the EQ-5D-5L in their routine care. Interviews were recorded and transcribed verbatim. Data were analysed according to a framework approach, using inductive and deductive techniques. Results: Participants discussed the acceptability of the EQ-5D-5L with reference to four themes: practicalities of use; holistic nature; influence on client care; and influence on health service. Participants found the EQ-5D-5L quick and easy to administer, and appreciated that it measured multiple domains of health that were relevant to their clients' care. They believed the EQ-5D-5L helped to identify client problems, and inform service delivery. They also reported features that were less acceptable, including a lack of item specificity to some healthcare disciplines. Participants reported the challenge of managing conflict between their assessment of the client's health and the client's perspective of their own health, leading some to question whether the client could provide an accurate reflection of their own health. Conclusions: The EQ-5D-5L has several features that healthcare staff viewed as acceptable for routine collection and use in healthcare. Training on the validity of the patient reported perspective and broadening the scope of PROMs collection beyond the EQ-5D-5L should be considered to facilitate large-scale implementation. [ABSTRACT FROM AUTHOR]

Background: To manage injuries effectively, players, head coaches, and medical personnel need to have excellent knowledge, attitudes, and behaviours in relation to the identification of risk factors for injuries, the implementation of injury prevention initiatives, as well as the implementation of effective injury management strategies. Understanding the injury context, whereby specific personal, environmental, and societal factors can influence the implementation of injury prevention initiatives and injury management strategies is critical to player welfare. To date, no qualitative research investigating the context of injuries, has been undertaken in elite-level women's football. The aim of our study was to explore the knowledge, attitudes, and behaviours of players, head coaches, and medical personnel in the Irish Women's National League (WNL) to injury prevention and injury management. Methods: We used qualitative research methods to explore the knowledge, attitudes, and behaviours of players, head coaches, and medical personnel in the Irish WNL to injury prevention and injury management. Semi-structured interviews were undertaken with 17 players, 8 medical personnel, and 7 head coaches in the Irish WNL. The data were analysed using thematic analysis. Our study is located within an interpretivist, constructivist research paradigm. Results: The participants had incomplete knowledge of common injuries in elite-level football, and many held beliefs about risk factors for injuries, such as menstrual cycle stage, which lacked evidence to support them. Jumping and landing exercises were commonly used to reduce the risk of injuries but evidence-based injury prevention exercises and programmes such as the Nordic hamstring curl, Copenhagen adduction exercise, and the FIFA 11+ were rarely mentioned. Overall, there was dissatisfaction amongst players with their medical care and strength and conditioning (S & C) support, with resultant inadequate communication between players, head coaches, and medical personnel. Conclusion: Poor quality and availability of medical care and S & C support were considered to be a major obstacle in the effective implementation of injury risk reduction strategies and successful return-to-sport practices. More original research is required in elite-level women's football to explore injury risk factors, injury prevention initiatives, and contextual return-to-sport strategies, so that players, head coaches, and medical personnel can use evidence that is both up-to-date and specific to their environment. [ABSTRACT FROM AUTHOR]

Background: Value-based healthcare provider reimbursement models have been proposed as an alternative to traditional fee-for-service arrangements that can align financial reimbursement more closely to the outcomes of value to patients and society. This study aimed to investigate stakeholder perceptions and experiences of different reimbursement systems for healthcare providers in high-performance sport, with a focus on fee-for-service versus salaried provider models. Methods: Three in-depth semi-structured focus group discussions and one individual interview were conducted with key stakeholders across the Australian high-performance sport system. Participants included healthcare providers, health managers, sports managers and executive personnel. An interview guide was developed using the Exploration, Preparation, Implementation, Sustainment framework, with key themes deductively mapped to the innovation, inner context and outer context domains. A total of 16 stakeholders participated in a focus group discussion or interview. Results: Participants identified several key advantages of salaried provider models over fee-for-service arrangements, including: the potential for more proactive and preventive models of care; enhanced inter-disciplinary collaboration; and the ability for providers to have a deeper understanding of context and how their role aligns with a broader set of priorities for an athlete and the organisation. Noted challenges of salaried provider models included the potential for providers to revert to reactive care delivery when not afforded adequate capacity to provide services, and difficulties for providers in demonstrating and quantifying the value of their work. Conclusions: Our findings suggest that high-performance sporting organisations seeking to improve primary prevention and multidisciplinary care should consider salaried provider arrangements. Further research to confirm these findings using prospective, experimental study designs remains a priority. [ABSTRACT FROM AUTHOR]

The objective of this study is to assess the initial perception of referring providers and radiologists to a virtual consultation solution (the Virtual Radiology Reading Room, VR3). VR3 is specifically designed to replace the radiology reading room phone and enable the radiologist to continue to work as part of the clinical care team fielding radiology consults without being confined to the same physical space. Surveys of providers' and radiologists' initial experience were conducted approximately 6 months after initial deployment. Users were asked about their overall impression, and how well the solution integrates with their workflow as well as how it compares to traditional phone calls to the reading room. Forty of 71 referring providers and 27 of 44 radiologists responded to our survey. VR3 was rated 4.7 out of 5 stars by referrers and 4.1 by radiologists. Seventy percent of referrers and radiologists preferred VR3 to the phone while 4.5% of referrers and 11% of radiologists preferred the phone. Referring providers and radiologists expressed a positive initial perception of the Virtual Radiology Reading Room and prefer it to traditional phone calls to the reading room. [ABSTRACT FROM AUTHOR]

Background: The use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in pediatric clinical practice can enhance clinical care and bring children and families' perspectives into evaluations of healthcare services. Implementing these measures is complex and requires a thorough assessment of the context of implementation The purpose of this study is to describe the barriers and facilitators to PROMs and PREMs implementation and to recommend strategies for implementing these measures in a pediatric health system. Methods: We used a qualitative descriptive approach to analyse data from interviews to understand the experiences of PROMs and PREMs users across different pediatric settings in a single Canadian healthcare system. Results: There were 23 participants representing a variety of roles within the healthcare system and pediatric populations. We found five main factors that affected implementation of PROMs and PREMs in pediatric settings: 1) Characteristics of PROMs and PREMs; 2) Individual's beliefs; 3) Administering PROMs and PREMs; 4) Designing clinical workflows; and 5) Incentives for using PROMs and PREMs. Thirteen recommendations for integrating PROMs and PREMs in pediatric health settings are provided. Conclusions: Implementing and sustaining the use of PROMs and PREMs in pediatric health settings presents several challenges. The information presented will be useful for individuals who are planning or evaluating the implementation of PROMs and PREMs in pediatric settings. Plain English summary: Patient-reported outcome measures are standardized questionnaires that ask patients about their health and well-being and are useful for tracking patient progress and outcomes of care. Patient-reported experience measures ask patients about their experiences while receiving care and are useful for quality improvement and experience research. Clinicians can use them to help identify patients' needs, monitor a person's health status, and to give extra information that helps with planning treatment. These measures also provide data that health services can use to understand whether their programs are helpful from the patients' perspective. We know that using these measures is beneficial, but there are many challenges to overcome before they are used consistently in a health system. In pediatrics there are special considerations, like whether a caregiver or child should be answering the questions, or whether a parent should be able to see their child's answers. In this study, we interviewed people in the pediatric health system who are successfully using patient-reported outcome and experience measures about the challenges they face and the strategies they find helpful for using these measures. This information will be helpful for people who are planning to start using these measures in pediatric health care. [ABSTRACT FROM AUTHOR]

Background: Patient-reported experience measures (PREMs) assess quality-of-care from patients' perspectives. PREMs can be used to enhance patient-centered care and facilitate patient engagement in care. With increasing quality improvement studies in clinical practice, the use of PREMs has surged. As a result, knowledge about stakeholder experiences of using PREMs to assess quality of care across diverse clinical settings is needed to inform PREM implementation efforts. To address this, this review examines the qualitative literature on patient and healthcare provider experiences of using PREMs in clinical practice. Methods: Medline, Embase and PsycInfo were systematically searched from inception to May 2021. Additional searching of reference lists for all included articles and relevant review articles were performed. Retrieved articles were screened for eligibility by one reviewer and 25% cross-checked by a second reviewer across all stages of the review. Full texts meeting eligibility criteria were appraised against the COREQ checklist for quality assessment and thematic analysis was used to analyze textual data extracted from the results. Results: Electronic searches identified 2683 records, of which 20 studies met eligibility criteria. Extracted data were synthesized into six themes: facilitators to PREM implementation; barriers to PREM implementation; healthcare providers' perspectives towards using PREMs; patients' perspectives towards using PREMs; advantages of using PREMs in clinical practice; limitations and practical considerations to reduce resistance of PREM usage. The primary factors facilitating and impeding the use of PREMs include organizational-, staff- and patient-related factors. Conclusion: Results can be used to guide the usage and implementation of PREMs in clinical settings by addressing the identified barriers and building on the perceived benefits to encourage adoption of PREMs. Results around facilitators to PREM implementation and practical considerations could also promote appropriate use of PREMs by healthcare providers, helping to improve practice and the quality of care based on patient feedback. [ABSTRACT FROM AUTHOR]

Background: Patient-reported outcome measures (PROMs) play an important role in promoting and supporting patient and family-centered care. Implementing interventions like PROMs in routine clinical care require key stakeholders to change their behavior. The aim of this study was to utilize the Theoretical Domains Framework (TDF) to identify barriers and enablers to the implementation of PROMs in pediatric outpatient asthma clinics from healthcare providers' perspective. Methods: This TDF-guided qualitative descriptive study is part of a larger multi-phase project to develop the KidsPRO program, an electronic platform to administer, collect, and use PROMs in pediatrics. Semi-structured qualitative interviews were conducted with 17 participants, which included pediatricians, nurses, allied health professionals and administrative staff from outpatient asthma clinics. All the interviews were transcribed, deductively coded, inductively grouped in themes, and categorized into barriers and enablers. Results: We identified 33 themes within 14 TDF domains, which were further categorized and tabulated into 16 barriers and 17 enablers to implementing PROMs in asthma clinics. Barriers to behavioral change were attributed to personal, clinical, non-clinical, and other system-level factors; they ranged from limited awareness of PROMs to language barriers and patient's complex family background. Enablers ranged from a personal commitment to providing patient and family-centered care to administering PROMs electronically. Conclusion: This implementation of science-based systematic inquiry captured the complexity of PROMs implementation in pediatric outpatient clinical care for asthma. Considering the consistency in barriers and enablers to implementing PROMs across patient populations and care settings, many findings of this study will be directly applicable to other pediatric healthcare settings. [ABSTRACT FROM AUTHOR]

Background: Given the urgent need for vaccines and treatments for coronavirus disease 2019 (COVID-19), the Symptoms of Infection with Coronavirus-19 (SIC), a comprehensive, patient-reported outcome (PRO) measure of signs and symptoms associated with COVID-19, was developed in full alignment with current US regulatory guidance to support evaluations of vaccines and treatments in development. Methods: An initial version of the SIC was developed to address concepts identified through a targeted literature review and consultation with experts in infectious diseases and clinicians routinely managing COVID-19 in a hospital setting. A qualitative study was conducted in sites in the United States among 31 participants aged ≥ 18 years who were English-speaking and willing and able to provide informed consent and a self-reported history by telephone or online method. The measure was refined based on additional feedback from the clinicians and three iterative rounds of combined concept elicitation and cognitive debriefing interviews conducted with patients, caregivers, and healthy volunteers. Results: Among 39 scientific articles identified in the literature review, 35 COVID-19 signs and symptoms were reported and confirmed during interviews with clinicians, patients, and caregivers. Patients and healthy participants suggested changes for refining the draft SIC to ensure consistent interpretation and endorsed both the 24-h recall period and use of an 11-point numeric rating scale (NRS) for capturing change in symptom severity. The final version of the SIC captures the daily presence or absence of 30 symptoms and a rating of severity for 25 of the 30 symptoms using an NRS for those symptoms reported as present. Conclusions: The SIC comprehensively addresses observations described in the literature, by clinicians, and by patients, and captures patients' experiences with COVID-19 in a manner that minimizes complexity and facilitates completion for both patients and healthy volunteers. This measure is thus appropriate for use in clinical trials of both therapeutics and vaccines for COVID-19. [ABSTRACT FROM AUTHOR]

In this plain language podcast, highlights from the European Society for Medical Oncology (ESMO) Congress 2021 are discussed from the perspective of both a patient and a healthcare professional. The patient advocacy track at the congress was co-developed with patients, and was integrated into the overall programme. It included four sessions on the financial impact of cancer, treatments that use the body's immune system to fight cancer, technology, and rare cancers. This comes at a time when there is an increasing focus on the value of real-world data (data from a real-life setting, rather than in a clinical trial) and a more active role for patients and patient organisations as partners in research. Challenges and opportunities arising during the COVID-19 pandemic were also discussed, including logistical complexities in healthcare and consequent uncertainty for patients in accessing care, and opportunities including increased use of telemedicine and broader participation offered by virtual/on-site hybrid congress formats, as used in ESMO 2021. Data discussed on combination treatments for patients with bladder cancer suggest an improved chance of remission for patients intolerant or resistant to existing treatment. Some of the data from studies in kidney cancer also suggest that treatment breaks or longer periods between treatment can improve quality of life and reduce treatment costs, without reducing treatment effectiveness. Although data on bladder and kidney cancer studies were seen to be promising, the authors recognise the time it takes for such findings to reach clinical practice, and the importance of managing expectations in the patient community. The authors conclude their discussion by reflecting on key challenges and opportunities moving forward, including restoring and improving care and efficiency of cancer services, and working together with patient advocates and advocacy organisations as essential partners in achieving this. Er-ortu1YQmrre2dQLiQse ESMO Podcast video [ABSTRACT FROM AUTHOR]

Background: Use of digital health services, such as digital patient-reported outcomes, depends on many different human factors as well as digital design solutions. One factor is clinicians' attitude towards the system, their reasoning behind the using system and their perceptions of patients' ability to engage with digital health systems. This study aimed to explore hospital clinicians' attitudes towards digital patient-reported outcomes used in the routine care and treatment of inflammatory bowel disease, and to explore the potential role of clinicians' attitudes in influencing patients' use of digital patient-reported outcomes. Results: Twelve clinicians using digital patient-reported outcome assessments in the care of inflammatory bowel disease were interviewed about their experiences of, and perspectives on, using this service. Most participants supported the use of digital patient-reported outcome assessments in the care of most patients. Participants reported that most patients found the digital solution easy to use. They perceived digital patient-reported outcomes to have three main purposes: prioritising resources; improving patients' quality of life; and improving quality of care. The patient-clinician relationship was of great importance to participants. Participants varied in their intention to use digital PRO, as some viewed the system as a positive but optional add-on for patients, whilst others intended to use the system with all eligible patients. Conclusion: Clinicians' general support of using digital patient-reported outcomes might facilitate their use among patients with inflammatory bowel disease. The participants saw benefits in doing so for patients, clinicians and the wider health service. Clinicians' attitudes towards the use of digital PRO in the care of their patients may influence patients' uptake of health service. [ABSTRACT FROM AUTHOR]

Background: Assess the feasibility of using goal attainment scaling (GAS) in care planning for older adults with complex needs. GAS is an individualized approach to goal setting and follow up using a quantified scale. To date, little is known about the feasibility of GAS among this population. Methods: We conducted a qualitative study with a sample of 28 older adults and 23 providers from diverse settings to evaluate the value and challenges of this approach. We conducted semi-structured interviews and iteratively coded and analyzed interview transcripts for themes related to value, challenges, and implementation. Results: Most older adults and providers reported that the GAS approach added value to the care encounter. GAS supported collaboration and patient accountability for their goals, though it could be demotivating to some patients. Some older adults and providers noted that GAS could be confusing and that it was uncomfortable to talk about negative outcomes (i.e., the − 2 and − 1 boxes of the scale). Factors that facilitated implementation included using visual copies of the GAS forms, having an established patient-provider relationship, practicing the approach, and having previous goal-related clinical training. Conclusions: GAS was feasible to implement across diverse settings, and, despite challenges, both older adults and providers reported that it added value to care planning encounters with the potential to improve delivery of person-centered care. Further efforts to demonstrate the applicability and benefit of this method for older adults are warranted, particularly to address implementation of the approach. [ABSTRACT FROM AUTHOR]

Background: Childhood obesity can affect physical as well as psychosocial wellbeing. Therefore, childhood obesity care aims to improve all dimensions of health related quality of life (HRQoL). HRQoL can be measured with the generic questionnaire PedsQL4.0 and the weight-specific IWQOL-Kids. In the Netherlands, HRQoL assessment is conducted by the coordinating professional (CP). The aim of this qualitative study was to examine how and when to implement the measurement and discussion of HRQoL using the PedsQL4.0 and IWQOL-Kids within the integrated care for children with obesity in the Netherlands. Semi-structured interviews were conducted with fourteen CPs, in which the following was discussed: a) familiarity and attributions with regard to the assessment of HRQoL; b) wishes and needs with regard to the usage of the questionnaires; c) its practical incorporation. Results: Interviews revealed that most CPs gained insight into the HRQoL by talking with families. One CP used the PedsQL4.0, the remaining CPs were unfamiliar with the two questionnaires. Even though some barriers, for instance a lack of time, might hinder the implementation of the PedsQL4.0 and IWQOL-Kids, all participants think the usage of either one or both questionnaires would have additional value to the support and care for children with obesity. There was no consensus about the questionnaire of preference. Conclusions: When the right preconditions are met, HRQoL questionnaires have the potential to support CPs in improving the care for children with obesity, tailored to each individual child. [ABSTRACT FROM AUTHOR]

Background: Physical activity behavior is a complex and multidimensional phenomenon. For its analysis, transdisciplinary biopsychosocial approaches yield great potential. In health research, the biopsychosocial model has experienced a renaissance. Researchers have tried to grasp the complex interplay of biological, psychological, and social factors. With this scoping review, we aimed to examine how the 'biopsychosocial' has been conceptualized in scientific work related to physical activity behavior. Methods: The scoping review was informed by the PRISMA guidelines for scoping reviews (PRISMA-ScR). A systematic literature search was conducted in Web of Science, SportDiscus, PsycArticles, PsycInfo, and PubMed. Only articles published in peer-reviewed journals that contained all three components of a biopsychosocial approach (e.g., bio/physio/genetic, psycho/mental, and socio/cultural/environmental) were included. We only included articles in our narrative synthesis that integrated physical activity behavior into a biopsychosocial model, or investigated or described physical activity behavior on the basis of such a model. Results: Thirteen studies met the inclusion criteria; eight articles pursued a biopsychosocial approach in the tradition of Engel, five employed a socio-ecological approach. The models in the analyzed articles referred to either correlates of physical activity behavior, or the influence of physical activity on health or aging. Only a minority of the articles, however, referred to interactions between biological, psychological, and social factors. Conclusions: The included articles were quite heterogeneous in their approach to physical activity from a biopsychosocial perspective. The included articles illustrate that the adoption of a biopsychosocial perspective may assist to capture and understand the complex phenomenon of physical activity behavior and might inform future transdisciplinary physical activity research. [ABSTRACT FROM AUTHOR]

Background: According to studies of phenylketonuria (PKU), the Brazilian population's metabolic control shows unsatisfactory indexes from childhood. Research on patients' perceived difficulties or barriers to adherence to treatment can help us to comprehend how these outcomes are associated. The present study aimed to: (1) describe the development of an inventory for identifying the most frequent and relevant perceived barriers to PKU treatment from the perspective of patients, caregivers, and healthcare professionals; (2) evaluate certain psychometric characteristics of the new measure; and, (3) explore potential predictors (sociodemographic and medical characteristics) that may contribute to increasing the number of perceived barriers and examine whether the number of barriers is associated with the degree of adherence shown by the patient. Results: Participants in the study were 23 patients with PKU (M age = 18.0 years; SD = 7.3; range 6 to 34 years; 69% early-treated) in classical (n = 11) and mild (n = 12) form, and 11 caregivers. The inventory, developed to ascertain perceived barriers to treatment, was completed by patients (≥ 13 years) and caregivers of patients aged 6 to 17 years. Analyses were conducted to investigate whether barrier inventory scores were associated with adherence to treatment as measured by phenylalanine levels in patients' medical records. Scores on the inventory differed across the patient age groups: adolescents had lower scores (i.e. reported fewer barriers) compared with those of adults (U = 8.000, p = 0.008); patients with better recent metabolic control also reported fewer perceived barriers than did patients with poor adherence (U = 20.000, p = 0.009); and the number of perceived barriers was positively associated with recent blood phenylalanine concentration (Kendall's taub = 0.41; p = 0.001). Conclusions: These results suggest that the inventory has merit in assessing perceived barriers and support the need for further research on barriers perceived by PKU patients. [ABSTRACT FROM AUTHOR]

Background: Patient reported outcomes (PROs) provide information on a patient's health status coming directly from the patient. Measuring PROs with patient reported outcome measures (PROMs) has gained wide interest in clinical practice for individual patient care, as well as in quality improvement, and for providing transparency of outcomes to stakeholders through public reporting. However, current knowledge of selecting and implementing PROMs for these purposes is scattered, and not readily available for clinicians and quality managers in healthcare organizations. The objective of this study is to develop a framework with tools to support the systematic selection, implementation and evaluation of PROs and PROMs in individual patient care, for quality improvement and public reporting. Methods: We developed the framework in a national project in the Netherlands following a user-centered design. The development process of the framework contained five iterative components: (a) identification of existing tools, (b) identification of user requirements and designing steps for selection and implementation of PROs and PROMs, (c) discussing a prototype of the framework during a national workshop, (d) developing a web version, (e) pre-testing of the framework. A total of 40 users with different perspectives (clinicians, patient representatives, quality managers, purchasers, researchers) have been consulted. Results: The final framework is presented as the PROM-cycle that consists of eight steps in four phases: (1) goal setting, (2) selecting PROs and PROMs, (3) developing and testing of quality indicator(s), (4) implementing and evaluating the PROM(s) and indicator(s). Users emphasized that the first step is the key element in which the why, for whom and setting of the PROM has to be defined. This information is decisive for the following steps. For each step the PROM-cycle provides guidance and tools, with instruments, checklists, methods, handbooks, and standards supporting the process. Conclusion: We developed a framework to support the selection and implementation of PROs and PROMs. Each step provides guidance and tools to support the process. The PROM-cycle and its tools are publicly available and can be used by clinicians, quality managers, patient representatives and other experts involved in using PROMS. Through periodic evaluation and updates, tools will be added for national and international use of the PROM-cycle. [ABSTRACT FROM AUTHOR]

Background: The literature on the specification and measurement of the outcomes of the healthcare transition from pediatric to adult centered-care is scarce and methodologically weak. To address these gaps, we conducted a series of studies to develop a multidimensional, multi-informant (young adults, parents, and healthcare providers) measure of healthcare transition outcomes for young adults with type 1 diabetes (T1D), the Healthcare Transition Outcomes Inventory (HCTOI). The current study describes the development and refinement of the HCTOI item pool. Methods: Following Patient Reported Outcomes Measurement Information System (PROMIS) standards, the research team conducted qualitative interviews to define six content domains of healthcare transition outcomes from the perspectives of multiple stakeholders, developed an initial item pool of the HCTOI based on the six domains, analyzed expert item ratings and feedback for content validation, and conducted cognitive interviews with informants (patients, parents, and healthcare providers) for further item pool refinement. Results: Qualitative findings revealed six healthcare transition outcome domains: 1) Biomedical markers of T1D control; 2) Navigation of a new health care system; 3) Possession of T1D self-management skills and knowledge; 4) Integration of T1D care into emerging adult roles; 5) Balance of parental involvement with autonomy; and 6) Attainment of T1D "ownership." An initial pool of 88 items focused on the extent to which a young adult with T1D is successful on each of the six domains. Experts rated all content domains and all but six items as relevant. In addition to suggesting additional items, experts were concerned about the length of the measure, response burden, and whether every informant type would have sufficient knowledge to rate items in particular content domains. Cognitive interviews resulted in retaining all six content domains, but dropping some items and yielded fewer items for the healthcare provider version (47 items versus 54 items for the young adult- and parent-versions). Conclusions: Expert review and cognitive interviews confirmed that all six domains of HCT outcomes were relevant and both procedures resulted in retaining a sufficient number of clear and representative items for each content domain. The HCTOI represents the first multi-informant, rigorously developed item pool that comprehensively measures the multiple components of the transition from pediatric to adult specialty healthcare. [ABSTRACT FROM AUTHOR]

Introduction: Calls for enabling ‘critical thinking’ are ubiquitous in health professional education. However, there is little agreement in the literature or in practice as to what this term means and efforts to generate a universal definition have found limited traction. Moreover, the variability observed might suggest that multiplicity has value that the quest for universal definitions has failed to capture. In this study, we sought to map the multiple conceptions of critical thinking in circulation in health professional education to understand the relationships and tensions between them.Methods: We used an inductive, qualitative approach to explore conceptions of critical thinking with educators from four health professions: medicine, nursing, pharmacy, and social work. Four participants from each profession participated in two individual in-depth semi-structured interviews, the latter of which induced reflection on a visual depiction of results generated from the first set of interviews.Results: Three main conceptions of critical thinking were identified: biomedical, humanist, and social justice-oriented critical thinking. ‘Biomedical critical thinking’ was the dominant conception. While each conception had distinct features, the particular conceptions of critical thinking espoused by individual participants were not stable within or between interviews.Discussion: Multiple conceptions of critical thinking likely offer educators the ability to express diverse beliefs about what ‘good thinking’ means in variable contexts. The findings suggest that any single definition of critical thinking in the health professions will be inherently contentious and, we argue, should be. Such debates, when made visible to educators and trainees, can be highly productive. [ABSTRACT FROM AUTHOR]

Background: Rationing is a controversial topic among US physicians. Understanding their attitudes and behaviors around rationing may be essential to a more open and sensible professional discourse on this important but controversial topic.Objective: To describe rationing behavior and associated factors among US physicians.Design: Survey mailed to US physicians in 2012 to evaluate self-reported rationing behavior and variables related to this behavior.Setting: US physicians across a full spectrum of practice settings.Participants: A total of 2541 respondents, representing 65.6 % of the original mailing list of 3872 US addresses.Interventions: The study was a cross-sectional analysis of physician attitudes and self-reported behaviors, with neutral language representations of the behaviors as well as an embedded experiment to test the influence of the word "ration" on perceived responsibility.Main Outcome Measures: Overall percentage of respondents reporting rationing behavior in various contexts and assessment of attitudes toward rationing.Key Results: In total, 1348 respondents (53.1 %) reported having personally refrained within the past 6 months from using specific clinical services that would have provided the best patient care, because of health system cost. Prescription drugs (n = 1073 [48.3 %]) and magnetic resonance imaging (n = 922 [44.5 %]) were most frequently rationed. Surgical and procedural specialists were less likely to report rationing behavior (adjusted odds ratio [OR] [95 % CI], 0.8 [0.9-0.9] and 0.5 [0.4-0.6], respectively) compared to primary care. Compared with small or solo practices, those in medical school settings reported less rationing (adjusted OR [95 % CI], 0.4 [0.2-0.7]). Physicians who self-identified as very or somewhat liberal were significantly less likely to report rationing (adjusted OR [95 % CI], 0.7 [0.6-0.9]) than those self-reporting being very or somewhat conservative. A more positive opinion about rationing tended to align with greater odds of rationing.Conclusions: More than one-half of respondents engaged in behavior consistent with rationing. Practicing physicians in specific subgroups were more likely to report rationing behavior. [ABSTRACT FROM AUTHOR]

Background: To optimize home care, it is essential to determine how care recipients experience quality of care. Traditionally, quality of care is measured with normative quality indicators such as safety, efficiency, or prevalence rates such as falls. The growing interest for qualitative patient-reported experience measures in home care requires insight into the needs of care receivers, providers, and organizations as key-stakeholders. Each stakeholder has their own needs that are important to communicate and use to conduct thorough comparisons before implementing new experience measures. This study aims to understand the needs of clients, formal/informal caregivers, and managers/policy officers in measuring client's experienced quality of care in home care. Methods: Four focus group interviews and 25 semi-structured interviews with key-stakeholders were conducted and analyzed by means of content analysis. The value-proposition canvas was used as a thematic framework to explore the purpose of experience quality of care measures and related pains and gains. Results: There were two main purposes for measuring experienced quality of care: first improving the primary care process of individual clients and second for learning and improving in home care team. Using experienced quality of care measures for external accountability and transparency on an organizational or national level were considered less relevant. Among others, participants described not having time and no clear procedure for conducting an evaluation as a pain of the current methods used to evaluate perceived quality of home care. As gains they put forward the ability to informally evaluate experiences during care delivery and to openly discuss complaints with a familiar caregiver. Conclusions: This study advocates that home care organizations should be aware of the goal of quality of care measures. They should consider selecting experienced quality of care measures mainly for improving primary care processes of individual clients. The results also underline the relevance of adopting next to quantitative evaluations, more narrative evaluation methods which support communicating openly on care experiences, leading to concrete point-of-improvement. The findings of this study can serve as a guide for both the development or selection of adequate methods, from the perspectives of key-stakeholders, in assessing experienced quality in home care. [ABSTRACT FROM AUTHOR]

Introduction: Outcome of emergency admissions is usually limited to mortality with little attempt to capture the views of health status of survivors. This is because of the challenge of determining patient reported outcome measures (PROMs) for the period before their emergency admission. The aim was to assess the feasibility of collecting retrospective PROMs to capture the pre-admission health status of patients admitted as emergencies. Methods: Prospective study of two cohorts: patients undergoing primary coronary angioplasty for acute ST elevation myocardial infarction (STEMI) in five hospitals and emergency laparotomy (EL) for gastro-intestinal conditions in 11 hospitals. Three rates were calculated: proportion of patients eligible for inclusion; proportion of eligible patients invited to participate; proportion of invitees who participated. Staff views were thematically analysed to understand factors that affected recruitment. Results: About 85% of patients were eligible of whom most were invited to participate (84% EL; 79% STEMI). The proportions of invitees agreeing to participate differed between STEMI (92%) and EL (72%), probably reflecting greater post-intervention morbidity in the latter. Variation between hospitals was observed in the proportion deemed eligible (EL 72–97%; STEMI 63–100%), proportion invited (EL 60–93%; STEMI 71–96%) and the proportion of invitees agreeing to participate (EL 55–92%; STEMI 67–100%). While this might reflect case-mix differences between hospitals, it suggests there is scope for less well performing hospitals to improve their recruitment processes. The extent to which this initial feasibility study was able to assess selection bias was limited to the age and sex of patients. There was no bias evident for EL patients but for STEMI, younger men were more likely to participate. Conclusion: It appears to be feasible to collect retrospective PROMs from patients admitted unexpectedly as emergencies for the two conditions studied. The relevance of these findings to other causes of emergency admissions needs to be established. In addition, these findings justify the case for a large, multi-site study that could explore unresolved concerns about selection bias, particularly those arising from the clinical characteristics of patients. It would also enable estimates of the extent of variation in PROMs between hospitals to determine the usefulness of using PROMs in emergency admissions. [ABSTRACT FROM AUTHOR]

Background: Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians to enhance person-centered care. However, integration of these instruments into palliative care clinical practice has been inconsistent. This study focused on the design of an electronic Quality of Life and Practice Support System (QPSS) prototype and its initial use in palliative inpatient and home care settings. Our objectives were to ascertain desired features of a QPSS prototype and the experiences of clinicians, patients, and family caregivers in regard to the initial introduction of a QPSS in palliative care, interpreting them in context. Methods: We applied an integrated knowledge translation approach in two stages by engaging a total of 71 clinicians, 18 patients, and 17 family caregivers in palliative inpatient and home care settings. Data for Stage I were collected via 12 focus groups with clinicians to ascertain desirable features of a QPSS. Stage II involved 5 focus groups and 24 interviews with clinicians and 35 interviews with patients or family caregivers during initial implementation of a QPSS. The focus groups and interviews were recorded, transcribed, and analyzed using the qualitative methodology of interpretive description. Results: Desirable features focused on hardware (lightweight, durable, and easy to disinfect), software (simple, user-friendly interface, multi-linguistic, integration with e-health systems), and choice of assessment instruments that would facilitate a holistic assessment. Although patient and family caregiver participants were predominantly enthusiastic, clinicians expressed a mixture of enthusiasm, receptivity, and concern regarding the use of a QPSS. The analyses revealed important contextual considerations, including: (a) logistical, technical, and aesthetic considerations regarding the QPSS as a technology, (b) diversity in knowledge, skills, and attitudes of clinicians, patients, and family caregivers regarding the integration of electronic QOL assessments in care, and (c) the need to understand organizational context and priorities in using QOL assessment data. Conclusion: The process of designing and integrating a QPSS in palliative care for patients with life-limiting conditions and their family caregivers is complex and requires extensive consultation with clinicians, administrators, patients, and family caregivers to inform successful implementation. [ABSTRACT FROM AUTHOR]

Background: The Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) was developed by the National Cancer Institute as an adverse event assessment system to evaluate patients' symptoms, which tend to be underestimated in cancer clinical trials. The aim of this study was to assess the psychometric properties of the Japanese version of the PRO-CTCAE and the degree of adverse event assessment discordance between clinicians and patients. Methods: A total of 187 cancer patients receiving systemic therapy were enrolled. Reproducibility, criterion validity, and responsiveness of the Japanese version of PROCTCAE were assessed. The EORTC QLQ-C30 was used as an external anchor. Discordance of assessment of adverse events between clinician and patients were also assessed using the CTCAE and PRO-CTCAE. Results: A total of 187 participants (187 for criterion validity, 80 for reproducibility, and 100 for responsiveness), were analyzed (Mage = 62.4 years). All patients responded to at least one symptom item (M = 16). The mean (SD) intra-class correlation coefficients of overall reproducibility for the Japanese PRO-CTCAE was 0.63 (0.02). The correlation coefficient for the corresponding items in the EORTC QLQ-C30 and the Japanese PRO-CTCAE was high (Pearson r = 0.56–0.76). The analysis of responsiveness revealed significant dose-response trends (Jonckheere-Terpstra test, ps < 0.001). Depending on the adverse events, a discrepancy was observed in evaluation between the clinician and patient. Conclusions: These results revealed that there is underestimation in the assessment of adverse events in Japan, and that the Japanese version of the PRO-CTCAE had acceptable reliability and validity for common and clinically important symptoms. [ABSTRACT FROM AUTHOR]