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Patients' Experiences in the Transition From Hospital to Home Palliative Care: A Systematic Review and Thematic Synthesis of Qualitative Studies.
Introduction: The concept of transition refers to the shift from hospital-based care to home-based palliative care, encompassing the physical, emotional, and logistical adjustments patients and families face. This study aimed to synthesize the experiences of people in palliative situations at home. Methods: A systematic review using thematic synthesis was guided using Preferred Reporting Items for Systematic Reviews and Meta-Analyzes (PRISMA) to organize the extracted information. Preparation of the qualitative synthesis followed ENTREQ-Enhancing transparency in reporting the synthesis of qualitative research recommendations. The literature search was carried out in MEDLINE, CINAHL, Psychology and Behavioral Sciences Collection, ProQuest, and Worldcat, until October 31, 2023, for articles addressing the experiences of people over 18 years of age in a palliative situation at home. Data analysis employed thematic synthesis, involving inductive coding, development of themes, and interpretative synthesis to provide a comprehensive understanding of patient experiences. Results: Of the 441 articles identified, 17 studies were included. Data analysis was guided by Meleis 's Theory of Transitions, and six distinct categories were included in the conditions of the transition (facilitators or inhibitors): "Personal Facilitators," "Community Facilitators," "Social Facilitators," "Personal Inhibitors," "Community Inhibitors," and "Social Inhibitors." Conclusions: Findings indicate that the unique nature of the palliative condition and self-perception requires nursing care adapted to the person's experiences. The data collected and the analysis carried out in this thematic synthesis of the literature collectively contributed to identifying the facilitating and inhibiting factors regarding the complex transition process, considering the Theory of Transitions. The findings highlight the importance of personalized care approaches that address patients' emotional, social, and logistical needs during the transition to home-based palliative care. They underscore the need for enhanced communication, caregiver support, and accessible healthcare resources to improve patient and family experiences, guiding future interventions and policy development in palliative care.
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Capturing Real-World Rare Disease Patient Journeys: Are Current Methodologies Sufficient for Informed Healthcare Decisions?
Rationale: Despite growing emphasis among healthcare decision-makers on patient perspectives and real-world outcomes to inform care and access decisions, understanding of patient journey experiences in rare diseases remains limited due to data collection and evaluation challenges. Aims and objectives: This systematic literature review (SLR) assessed study designs, methodologies, and outcomes reported in real-world investigations of rare disease patient journeys. Methods: Searches in PubMed and Google Scholar targeted English-language publications and congress proceedings from 1 January 2014, to 30 April 2024, including rare disease patients, caregivers, or healthcare providers. Keywords included 'Journey', 'Path', or 'Odyssey'. Two reviewers independently assessed eligibility and abstracted data. Descriptive analyses and quality assessments were conducted. Results: Thirty-one studies met inclusion criteria, with 296,548 participants spanning over 600 rare diseases. Most studies used prospective observational (61%) and cross-sectional (26%) designs and were conducted in Europe (45%). Interviews (39%) and surveys (29%) were common methodologies. Patients (87%) were the primary research focus, compared to caregivers (32%) or providers (10%). The most studied journey stages were 'Pre-diagnosis/Screening' (97%) and 'Diagnosis' (84%), while 'Disease Awareness' (16%) and 'Treatment Adherence' (6%) were less common. Across 164 outcomes reported, frequent outcomes included 'Healthcare Resource Utilization' (94%), 'Symptoms' (74%), and 'Time-to-Diagnosis' (71%). Fewer studies reported 'Costs' (19%), 'Caregiver/Family Burden' (16%), and 'Productivity' (13%). Time-to-diagnosis averaged 11.8 years and a median of 6.1 years. All but one study (97%) was rated low or very low quality due to observational designs. Conclusion: Most rare disease patient journey evidence focuses on 'Pre-diagnosis/Screening' and 'Diagnosis' stages using qualitative methods and surveys. While symptoms, time-to-diagnosis, and resource utilization were commonly reported, evidence gaps included treatment adherence, caregiver burden and productivity. Longitudinal assessments to collect real-world care and treatment burden outcomes, including caregiver perspectives, can enhance both clinician and policy decision-making for individuals living with rare diseases.
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Effects of implementation strategies on nursing practice and patient outcomes: a comprehensive systematic review and meta-analysis.
Background: Implementation strategies targeting individual healthcare professionals and teams, such as audit and feedback, educational meetings, opinion leaders, and reminders, have demonstrated potential in promoting evidence-based nursing practice. This systematic review examined the effects of the 19 Cochrane Effective Practice and Organization Care (EPOC) healthcare professional-level implementation strategies on nursing practice and patient outcomes. Methods: A systematic review was conducted following the Cochrane Handbook, with six databases searched up to February 2023 for randomized studies and non-randomized controlled studies evaluating the effects of EPOC implementation strategies on nursing practice. Study selection and data extraction were performed in Covidence. Random-effects meta-analyses were conducted in RevMan, while studies not eligible for meta-analysis were synthesized narratively based on the direction of effects. The quality of evidence was assessed using GRADE. Results: Out of 21,571 unique records, 204 studies (152 randomized, 52 controlled, non-randomized) enrolling 36,544 nurses and 340,320 patients were included. Common strategies (> 10% of studies) were educational meetings, educational materials, guidelines, reminders, audit and feedback, tailored interventions, educational outreach, and opinion leaders. Implementation strategies as a whole improved clinical practice outcomes compared to no active intervention, despite high heterogeneity. Group and individual education, patient-mediated interventions, reminders, tailored interventions and opinion leaders had statistically significant effects on clinical practice outcomes. Individual education improved nurses' attitude, knowledge, perceived control, and skills, while group education also influenced perceived social norms. Although meta-analyses indicate a small, non-statistically significant effect of multifaceted versus single strategies on clinical practice, the narrative synthesis of non-meta-analyzed studies shows favorable outcomes in all studies comparing multifaceted versus single strategies. Group and individual education, as well as tailored interventions, had statistically significant effects on patient outcomes. Conclusions: Multiple types of implementation strategies may enhance evidence-based nursing practice, though effects vary due to strategy complexity, contextual factors, and variability in outcome measurement. Some evidence suggests that multifaceted strategies are more effective than single component strategies. Effects on patient outcomes are modest. Healthcare organizations and implementation practitioners may consider employing multifaceted, tailored strategies to address local barriers, expand the use of underutilized strategies, and assess the long-term impact of strategies on nursing practice and patient outcomes. Trial registration: PROSPERO CRD42019130446.
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Barriers and facilitators to the uptake of electronic collection and use of patient-reported measures in routine care of older adults: a systematic review with qualitative evidence synthesis
Objective The aims of this systematic review were to (1) synthesize the available qualitative evidence on the barriers and facilitators influencing implementation of the electronic collection and use of patient-reported measures (PRMs) in older adults' care from various stakeholder perspectives and (2) map these factors to the digital technology implementation framework Non-adoption, Abandonment, challenges to the Scale-up, Spread, Sustainability (NASSS) and behavior change framework Capability, Opportunity, Motivation, Behaviour (COM-B).Materials and Methods A search of MEDLINE, CINAHL Plus, and Web of Science databases from 1 January 2001 to 27 October 2021 was conducted and included English language qualitative studies exploring stakeholder perspectives on the electronic collection and use of PRMs in older adults' care. Two authors independently screened studies, conducted data extraction, quality appraisal using the Critical Appraisal Skills Programme (CASP), data coding, assessed confidence in review findings using Grading of Recommendations Assessment, Development, and Evaluation Confidence in the Evidence from Reviews of Qualitative Research (GRADE CERQual), and mapped the findings to NASSS and COM-B. An inductive approach was used to synthesize findings describing the stakeholder perspectives of barriers and facilitators.Results Twenty-two studies were included from the 3368 records identified. Studies explored older adult, caregiver, healthcare professional, and administrative staff perspectives. Twenty nine of 34 review findings (85%) were graded as having high or moderate confidence. Key factors salient to older adults related to clinical conditions and socio-cultural factors, digital literacy, access to digital technology, and user interface. Factors salient to healthcare professionals related to resource availability to collect and use PRMs, and value of PRMs collection and use.Conclusion Future efforts to implement electronic collection and use of PRMs in older adults' care should consider addressing the barriers, facilitators, and key theoretical domains identified in this review. Older adults are more likely to adopt electronic completion of PRMs when barriers associated with digital technology access, digital literacy, and user interface are addressed. Future research should explore the perspectives of other stakeholders, including those of organizational leaders, digital technology developers and implementation specialists, in various healthcare settings and explore factors influencing implementation of PREMs.PROSPERO registration number CRD42022295894 Older adults are likely to have high care needs. Health outcomes and experiences can inform these care needs. Surveys can be used to collect health outcomes and experiences. Health care services have used paper surveys. It might be better to use electronic surveys. It saves time and cost for health care services. This study reviewed factors affecting use of electronic surveys. We included research findings from qualitative studies. These studies gathered views of older adults, carers, and health care staff. Many factors affect older adults' use of electronic surveys. Older adults need access to technology. Knowledge on how to use technology was important. Technology should be easy to use. Future work should research use of electronic surveys in different health care settings.
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Racism against healthcare users in inpatient care: a scoping review.
Background: Racism in the healthcare system has become a burgeoning focus in health policy-making and research. Existing research has shown both interpersonal and structural forms of racism limiting access to quality healthcare for racialised healthcare users. Nevertheless, little is known about the specifics of racism in the inpatient sector, specifically hospitals and rehabilitation facilities. The aim of this scoping review is therefore to map the evidence on racial discrimination experienced by people receiving treatment in inpatient settings (hospitals and rehabilitation facilities) or their caregivers in high-income countries, focusing specifically on whether intersectional axes of discrimination have been taken into account when describing these experiences. Methods: Based on the conceptual framework developed by Arksey and O'Malley, this scoping review surveyed existing research on racism and racial discrimination in inpatient care in high-income countries published between 2013 and 2023. The software Rayyan was used to support the screening process while MAXQDA was used for thematic coding. Results: Forty-seven articles were included in this review. Specifics of the inpatient sector included different hospitalisation, admission and referral rates within and across hospitals; the threat of racial discrimination from other healthcare users; and the spatial segregation of healthcare users according to ethnic, religious or racialised criteria. While most articles described some interactions between race and other social categories in the sample composition, the framework of intersectionality was rarely considered explicitly during analysis. Discussion: While the USA continue to predominate in discussions, other high-income countries including Canada, Australia and the UK also examine racism in their own healthcare systems. Absent from the literature are studies from a wider range of European countries as well as of racialised and disadvantaged groups other than refugees or recent immigrants. Research in this area would also benefit from an engagement with approaches to intersectionality in public health to produce a more nuanced understanding of the interactions of racism with other axes of discrimination. As inpatient care exhibits a range of specific structures, future research and policy-making ought to consider these specifics to develop targeted interventions, including training for non-clinical staff and robust, transparent and accessible complaint procedures.
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A Systematic Review and Quality Assessment of Cardiovascular Disease-Specific Health-Related Quality-of-Life Instruments Part I: Instrument Development and Content Validity
Objectives: Health-related quality-of-life (HRQoL) instruments for cardiovascular diseases (CVD) have been commonly used to measure important patient-reported outcomes (PROs) in clinical trials and practices. This study aimed at systematically identifying and assessing the content validity of CVD-specific HRQoL instruments in clinical studies. Methods: The research team searched Cumulative Index to Nursing and Allied Health Literature, Embase, and PubMed from inception to January 20, 2022. The research team included studies that reported the development and content validity for CVD-specific instruments. Two reviewers independently assessed the methodological quality using the Consensus-based Standards for the Selection of Health Measurement Instruments methods on evaluating content validity of PROs. Content analysis was used to categorize the items included in the instruments. Results: The research team found 69 studies reporting the content validity of 40 instruments specifically developed for CVD. Fourteen (35.0%) were rated "sufficient" with very low to moderate quality of evidence. For PRO development, all instruments were rated "doubtful" or "inadequate." Twenty-eight (70.0%) instruments cover the core concepts of HRQoL. Conclusions: The quality of development and content validity vary among existing CVD-specific instruments. The evidence on the content validity should be considered when choosing HRQoL instrument in CVD clinical studies and health economic evaluations.
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Topical treatments for atopic dermatitis (eczema): Systematic review and network meta-analysis of randomized trials
Background:Atopic dermatitis (AD) is a common skin condition with multiple topical treatment options, but uncertain comparative effects. Objective:We sought to systematically synthesize the benefits and harms of AD prescription topical treatments. Methods:For the 2023 American Academy of Allergy, Asthma & Immunology and American College of Allergy, Asthma, and Immunology Joint Task Force on Practice Parameters AD guidelines, we searched MEDLINE, EMBASE, CENTRAL, CINAHL, LILACS, ICTRP, and GREAT databases to September 5, 2022, for randomized trials addressing AD topical treatments. Paired reviewers independently screened records, extracted data, and assessed risk of bias. Random-effects network meta-analyses addressed AD severity, itch, sleep, AD-related quality of life, flares, and harms. The Grading of Recommendations Assessment, Development and Evaluation approach informed certainty of evidence ratings. We classified topical corticosteroids (TCS) using 7 groups-group 1 being most potent. This review is registered in the Open Science Framework (https://osf.io/q5m6s). Results:The 219 included trials (43,123 patients) evaluated 68 interventions. With high-certainty evidence, pimecrolimus improved 6 of 7 outcomes-among the best for 2; high-dose tacrolimus (0.1%) improved 5-among the best for 2; low-dose tacrolimus (0.03%) improved 5-among the best for 1. With moderate- to high-certainty evidence, group 5 TCS improved 6-among the best for 3; group 4 TCS and delgocitinib improved 4-among the best for 2; ruxolitinib improved 4-among the best for 1; group 1 TCS improved 3-among the best for 2. These interventions did not increase harm. Crisaborole and difamilast were intermediately effective, but with uncertain harm. Topical antibiotics alone or in combination may be among the least effective. To maintain AD control, group 5 TCS were among the most effective, followed by tacrolimus and pimecrolimus. Conclusions:For individuals with AD, pimecrolimus, tacrolimus, and moderate-potency TCS are among the most effective in improving and maintaining multiple AD outcomes. Topical antibiotics may be among the least effective.
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Oral health and healthy ageing: A scoping review
Background: Good oral health is an important part of healthy ageing, yet there is limited understanding regarding the status of oral health care for older people globally. This study reviewed evidence (policies, programs, and interventions) regarding oral health care for older people. Methods: A systematic search of six databases for published and grey literature in the English language by the end of April 2022 was undertaken utilising Arksey and O'Malley's scoping review framework. Results: The findings from oral health policy documents (n = 17) indicated a lack of priorities in national health policies regarding oral health care for older people. The most common oral health interventions reported in the published studies (n = 62) included educational sessions and practical demonstrations on oral care for older adults, nurses, and care providers. Other interventions included exercises of facial muscles and the tongue, massage of salivary glands, and application of chemical agents, such as topical fluoride. Conclusion: There is currently a gap in information and research around effective oral health care treatments and programs in geriatric dental care. Efforts must be invested in developing guidelines to assist both dental and medical healthcare professionals in integrating good oral health as part of healthy ageing. Further research is warranted in assessing the effectiveness of interventions in improving the oral health status of the elderly and informing approaches to assist the integration of oral health into geriatric care.
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Thirteen Nonpharmacological Interventions for Increasing the Quality of Life in Patients with Advanced Cancer: A Network Meta-analysis
Background: A variety of nonpharmacological interventions that improve the quality of life of patients with advanced cancer have been difficult for medical staff to select through randomized controlled trials or traditional meta-analyses. Thus, a network meta-analysis is necessary. Objective: This study used network meta-analysis to analyze the effect of 13 different nonpharmacological interventions on improving the living quality of patients with advanced cancer. Methods: Five English databases were searched up to January 2019. The search strategy only included terms relating to or describing the intervention. Results: The study included 13 different nonpharmacological interventions. The overall efficacy was summarized through a holistic study of quality of life. The study found that the combined effect sizes of 13 nonpharmacological interventions crossed the invalid line (weighted mean difference, -13 [95% confidence interval, -33 to 8.5] to 1.7 [95% confidence interval, -18 to 22]), indicating that none of the intervention was significantly different from each other. By evaluating the heterogeneity of this outcome, no significant evidence of heterogeneity ( P > .05) was observed. Probability ranking according to the surface under the cumulative ranking curve showed that there was a great possibility for the CanWalk intervention and structured multidisciplinary intervention to improve outcomes for cancer patients. Conclusions: Thirteen nonpharmacological interventions did not significantly impact quality of life. Regarding the probability rank, CanWalk intervention may be the most promising way that advanced cancer patients can help themselves to a better life. Because of the limitations of the current studies, the conclusion needs further evidence. Implications for practice: Nurses should consider recommending moderate physical activity for patients with advanced cancer.
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The voice of caregivers of children and adolescents with spinal cord injuries: A scoping review.
Context: Participation in SCI research with caregivers of children and adolescents with spinal cord injury (SCI) can occur in a range of different ways. This review explores the extent to which caregivers' participation is connected to what might be called a voice. Objectives: To explore the voice of caregivers by collating available research with the participation of caregivers of children and adolescents with SCI, and synthesizing how the research has been conducted. Methods: The databases CINAHL, ERIC, MEDLINE, PsycInfo, and Scopus were searched for articles published between January 2008 and March 2022. Descriptive and narrative information was extracted and factors describing how caregivers participated were identified using an inductive approach. Results: Twenty-nine articles were identified, of which 28 had affiliations connected to the USA, and 25 to Shriners Hospitals for Children. In most of the articles, the caregivers were invited to participate in the research to complete or develop measures. Information from the caregivers was often captured using close-structured questions and summarized quantitatively with little or no exploration of the perspectives of the caregivers. Conclusion: The voice of caregivers of children and adolescents with SCI in research is limited by representativeness, the pre-determined emphasis, a lack of involvement in the process, and the reported narrative. By reflecting on voice, caregivers can have their experiences and perspectives acted upon to a greater extent to bring change, ultimately leading to improved care and health for children and adolescents with SCI.
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Effectiveness of interventions to enhance shared decision-making in wound care: A systematic review.
Aims: To explore the effectiveness of interventions to enhance patient participation in shared decision-making in wound care and tissue viability. Background: Caring for people living with a wound is complex due to interaction between wound healing, symptoms, psychological wellbeing and treatment effectiveness. To respond to this complexity, there has been recent emphasis on the importance of delivering patient centred wound care and shared decision-making to personalise health care. However, little is known about the effectiveness of existing interventions to support shared decision-making in wound care. Design: Systematic review of interventional studies to enhance shared decision-making in wound care or tissue viability. This was reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines 2020. Methods: Interventional primary research studies published in English up to January 2023 were included. Screening, data extraction and quality appraisal were undertaken independently by two authors. Data sources: Medline, EMBASE, Cochrane Central Register of Controlled Trails (trials database), CINAHL, British Nursing Index (BNI), WorldCat (thesis database), Scopus and registries of ongoing studies (ISRCTN registry and clinicaltrials.gov). Results: 1063 abstracts were screened, and eight full-text studies included. Findings indicate, interventions to support shared decision-making are positively received. Goal or need setting components may assist knowledge transfer between patient and clinician, and could lower short term decisional conflict. However, generally findings within this study had very low certainty due to the inconsistencies in outcomes reported, and the variation and complexity of single and multiple interventions used. Conclusions: Future research on shared decision-making interventions in wound care should include the involvement of stakeholders and programme theory to underpin the interventions developed to consider the complexity of interventions. Implications for the profession and patient care: Patients setting out their needs or goals and exploring patient questions are important and should be considered in clinical care. Registration: The review protocol was prospectively registered (PROSPERO database: CRD42023389820). No patient or public contribution: Not applicable as this is a systematic review.
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Violence against nurses by patients and visitors in the emergency department: An integrative review.
Aim: This integrative review explored violence against emergency nurses by patients/visitors, examining its nature, contributing factors and consequences. Design: Integrative review. Data sources: Articles were obtained from PubMed, CINAHL, EMBASE, Web of Science and PsycInfo databases, up until December 2021. Review methods: 26 articles were reviewed, evaluating study quality with the Crowe Critical Appraisal Tool and synthesizing conclusions through theme development and coding. Results: This review delves into the issue of violence perpetrated against emergency nurses by patients and visitors. It elucidates three overarching themes: the nature of violence, the contributing factors and the consequences of such acts. Conclusion: The findings inform healthcare policy for the development of prevention approaches while identifying research gaps and emphasizing the need for alternative study designs and methodologies. Impact: This review has implications for nursing practice, policymaking and research, emphasizing the need for stakeholder engagement and tailored interventions for at-risk emergency nurses. No patient or public contribution: This project was an integrative review of the literature therefore no patient or public contribution was necessary. What already is known: Violence by patients and visitors in healthcare settings, especially in emergency departments, has garnered considerable attention. What this paper adds: This review specifically examines violence-targeting emergency department nurses from patients and visitors, assessing its characteristics, contributing factors and consequences. Implications for practice/policy: The findings will guide stakeholder engagement in developing interventions to support vulnerable emergency nurses.
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Assessing quality of life in solid organ transplant recipients: A systematic review of the development, content, and quality of available condition- and transplant-specific patient-reported outcome measures.
Purpose: We aimed to identify the condition- and transplant-specific patient-reported outcome measures (PROMs) available to measure quality of life (QoL) in solid organ transplant (SOT) recipients, examine their development and content, and critically appraise the quality of their measurement properties, to inform recommendations for clinical and research use. Methods: We systematically searched MEDLINE, Embase, CINAHL, PsycINFO, Cochrane CENTRAL, and Scopus from inception to 27th January 2023. Search hits were screened for eligibility by two independent reviewers; papers reporting the development and/or validation of condition- and transplant-specific PROMs measuring QoL in adult SOT recipients were considered eligible. We abstracted and synthesised data on PROM characteristics, development (item generation and/or reduction), and content (QoL dimensions). Quality appraisal and synthesis were informed by the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) guidelines, and included methodological and quality assessment of measurement properties, GRADE levels of evidence, feasibility and interpretability. Results: We identified 33 papers reporting 26 QoL PROMs validated in SOT recipients (kidney n = 10 PROMs; liver n = 6; lung n = 3; heart n = 2; pancreas n = 1; multiple organs n = 4). Patient discussions (n = 17 PROMs) and factor analysis (n = 11) were the most common item generation and reduction techniques used, respectively. All PROMs measured ≥3 of nine QoL dimensions (all measured emotional functioning); KDQoL-SF and NIDDK-QA measured all nine. Methodological quality was variable; no PROM had low evidence or better for all measurement properties. All PROMs were COSMIN recommendation category 'B', primarily because none had sufficient content validity. Conclusions: There are many condition- and transplant-specific QoL PROMs validated in SOT recipients, particularly kidney. These findings can help inform PROM selection for clinicians and researchers. However, caution is required when adopting measures, due to the substantial heterogeneity in development, content, and quality. Each PROM has potential but requires further research to be recommendable. Greater consideration of patient and professional involvement in PROM development in this setting is needed to ensure sufficient content validity.
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A Systematic Review of Voice-Related Patient-Reported Outcome Measures for Use with Adults.
Purpose: This paper's purpose is to provide a resource for clinicians and researchers of select voice-related patient-reported outcome measures (PROMs) available in the English language. Method: A systematic search for voice-related PROMs was conducted between September 2020 and July 17, 2021. Databases included APA PsychInfo, Nursing and Allied Health Source, MEDLINE via the EBSCO interface, and Science Direct. Reference lists for PROMs-related articles were mined for reference to PROMs protocols. Results: Thirty voice-related PROMs were identified and categorized as either developed primarily for use in the clinic (n = 12), developed primarily for use in a specific research study (n = 6), or translated into English for publication (n = 12). Twelve PROMs were summarized: Aging Voice Index, Disease Specific Self-Efficacy in Spasmodic Dysphonia, Evaluation of the Ability to Sing Easily, Evaluating Voice Disability - Quality of Life Questionnaire, Glottal Function Index, Linear Analog Scale of Assessment of Voice Quality, Quality of Life in Recurrent Respiratory Papillomatosis, Speech Disability Questionnaire, Trans Woman Voice Questionnaire, Vocal Cord Dysfunction Questionnaire, Vocal Fatigue Index, and the Vocal Tract Discomfort Scale. Conclusion: The PROMs can be categorized into English-language voice-related PROMs developed primarily for clinical use, English-language PROMs developed primarily for research use, and English-language PROMs translated into English. The extent of reliability and validity testing completed varies in the PROMs developed primarily for clinical use. A PROM's psychometric properties as well as the language in which the PROM was tested, should guide clinicians and researchers as they consider which instrument(s) to use.
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Barriers and facilitators of meaningful patient participation at the collective level in healthcare organizations: A systematic review
Introduction Collective patient participation, such as patient participation in policy making, has become increasingly important to achieve high-quality care. However, there is little knowledge on how to let patients participate in a meaningful manner at this level. The aim of this systematic literature review was to provide an overview of barriers, facilitators, and associated impact of collective patient participation. Methods PubMed and EMBASE were searched until May 2023 for studies that evaluated collective patient participation. Study characteristics, methods for patient participation, barriers and facilitators, and impact (if measured) of patient participation were extracted from the articles. Results We included 59 articles. Identified barriers and facilitators of collective patient participation were grouped into five categories: (1) preconditions for patient participation, (2) strategy for patient participation, (3) preparation of patients and staff for patient participation, (4) support for patients and staff during patient participation, and (5) evaluation of patient participation. Impact of patient participation was reported in 34 included studies at three levels: quality of care and research, the team and organization, and the participants themselves. Only three studies reported quantitative outcomes. Conclusion Interestingly, similar challenges were experienced during a period of twenty years, indicating that little progress has been made in structuring patient participation. Our overview of barriers and facilitators will therefore help to improve and structure collective patient participation.
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The association between abusive behaviour and physician-patient relations: A systematic review
OBJECTIVE: This systematic review aims to explore the association between abusive behaviour and physician-patient relations in healthcare settings. STUDY DESIGN: Systematic review. METHODS: We searched for related studies on databases such as PubMed, Embase, and the Cochrane library, without restrictions on language, from inception until July 15, 2022. The risk of bias and the methodological quality was evaluated using the Newcastle-Ottawa Scale and Risk of Bias in Non-randomised Studies of Interventions tool. RESULTS: Ten studies were included in this systematic review, the participants of which were physicians and patients. The research from all the studies highlighted the detrimental effects of abusive behaviour on the relationship between physicians and patients, regardless of who the abusers were. CONCLUSIONS: Abusive behaviour in a clinical setting has a negative influence on the physician-patient relationship, whoever the perpetrator might be. The research sheds light on the importance of teaching communication skills to physicians and training them to manage conflicts and aggressive behaviours in healthcare settings.
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Recruitment of patients, carers and members of the public to advisory boards, groups and panels in public and patient involved health research: a scoping review.
Objectives: The objectives of this scoping review are to: (1) identify the distribution of and context of the recruitment strategies used, (2) explore the facilitators, benefits, barriers and ethical issues of the identified recruitment strategies, (3) distinguish the varying terminology for involvement (ie, panels, boards, individual) and (4) determine if the individual recruitment strategies used were to address issues of representation or bias. Design: A scoping review. Setting: This scoping review follows the framework by Peters et al. Seven electronic databases were explored including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library and PsycINFO (conducted July 2021). The search strategy was codeveloped among the research team, PPI research experts and a faculty librarian. Two independent reviewers screened articles by title and abstract and then at full text based on predetermined criteria. Primary and secondary outcome measures: Explore recruitment strategies used, facilitators, benefits, barriers and ethical issues of the identified recruitment strategies. Identify terminology for involvement. Explore recruitment strategies used to address issues of representation or bias. Results: The final sample was from 51 sources. A large portion of the extracted empirical literature had a clinical focus (37%, n=13) but was not a randomised control trial. The most common recruitment strategies used were human networks (78%, n=40), such as word of mouth, foundation affiliation, existing networks, clinics or personal contacts. Within the reviewed literature, there was a lack of discussion pertaining to facilitators, benefits, barriers and ethical considerations of recruitment strategies was apparent. Finally, 41% (n=21) of studies employed or proposed recruitment strategies or considerations to address issues of representation or bias. Conclusion: We conclude with four key recommendations that researchers can use to better understand appropriate routes to meaningfully involve patients, carers and members of the public to cocreate the evidence informing their care.
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Knowledge Translation in Glomerulonephritis: Successes in Translational Research From the Bench to Bedside.
Purpose of review: Glomerulonephritis refers to a rare group of diseases characterized by glomerular inflammation, which collectively are a common cause of kidney failure. Until recently, there was a lack of high-quality clinical trials to inform the care of patients with glomerulonephritides. We identified examples of successful translational research spanning from basic science to clinical applications, and highlight gaps in implementation science. Sources of information: The focus of our review was derived from discussions between health care professionals, researchers, and patient partners. We also performed literature searches pertaining to the treatment of glomerulonephritis in PubMed and Google Scholar. Methods: Examples of successful knowledge translation were generated through review of new evidence in the past 5 years and by iterative discussions by the authors. We then conducted a narrative review of several themes related to knowledge translation in glomerulonephritis. This was complemented by an interview with a patient partner to provide an example of a patient's perspective living with glomerulonephritis. Key findings: We summarized selected recent advances in glomerulonephritis and its knowledge translation in the following domains: (1) identification of auto-antibodies in membranous nephropathy and minimal change disease; (2) clinical trials of novel targeted therapies for IgA nephropathy and lupus nephritis, which have led to approval of new treatments; (3) developments in research networks and clinical trials in glomerulonephritis; (4) recognition of the importance in developing standardized patient reported outcome measures in clinical trials; and (5) barriers in knowledge translation including access to medication. Limitations: A systematic search of the literature and formal assessment of quality of evidence were beyond the scope of this review.
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The roles of nurses in supporting health literacy: A scoping review
INTRODUCTION: The importance of health literacy in achieving optimum health is highly significant, particularly in the nursing profession where it is an integral part of the roles and functions of nurses. Therefore, this scoping review aims to describe the roles of nurses in promoting patient health literacy and identify the determinant factors of health literacy in nursing practices. METHODS: An integrative search was conducted through four databases, namely, ScienceDirect, ProQuest, SAGE Journal, and PubMed, using various keyword combinations such as "health literacy," "health information," "patient health literacy," "patient literacy," and "nurses." Furthermore, the inclusion criteria employed were peer-reviewed articles focused on the nursing profession, explicitly discussing health literacy related to nursing, and including original studies, such as cross-sectional, quasi-experimental, and qualitative studies. The selected review articles were all published between 2017 and 2022. RESULTS: In total, 13 articles met the criteria and were applied in this scoping review. Most of these discuss health literacy related to nursing practice in clinical and community settings, as well as educational institutions. Health literacy is an essential aspect of professional nursing practice. Consequently, the supportive roles of nurses include acting as caregivers, facilitators, and educators to help patients overcome their literacy limitations and attain improved wellbeing. CONCLUSION: Nurses can improve the health literacy skills of patients by making health information related to their illnesses easier to access, understand, evaluate, and use. They must also recognize various factors influencing health literacy and use the factors as opportunities to optimize health literacy improvement. A health literacy approach can be applied by nurses to solve health problems and improve the quality of care for patients.
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The immaturity of patient engagement in value-based healthcare-A systematic review
INTRODUCTION: In recent years, Value-Based Healthcare (VBHC) has been gaining traction, particularly in hospitals. A core VBHC element is patient value, i.e., what matters most to the patient and at what cost can this be delivered. This interpretation of value implies patient engagement in patient-doctor communication. Although patient engagement in direct care in the VBHC setting is well described, patient engagement at the organizational level of improving care has hardly been studied. This systematic review maps current knowledge regarding the intensity and impact of patient engagement in VBHC initiatives. We focus on the organizational level of a continuous patient engagement model. METHODS: We performed a systematic review following PRISMA guidelines using five electronic databases. The search strategy yielded 1,546 records, of which 21 studies were eligible for inclusion. Search terms were VBHC and patient engagement, or similar keywords, and we included only empirical studies in hospitals or transmural settings at the organizational level. RESULTS: We found that consultation, using either questionnaires or interviews by researchers, is the most common method to involve patients in VBHC. Higher levels of patient engagement, such as advisory roles, co-design, or collaborative teams are rare. We found no examples of the highest level of patient engagement such as patients co-leading care improvement committees. CONCLUSION: This study included 21 articles, the majority of which were observational, resulting in a limited quality of evidence. Our review shows that patient engagement at the organizational level in VBHC initiatives still relies on low engagement tools such as questionnaires and interviews. Higher-level engagement tools such as advisory roles and collaborative teams are rarely used. Higher-level engagement offers opportunities to improve healthcare and care pathways through co-design with the people being served. We urge VBHC initiatives to embrace all levels of patient engagement to ensure that patient values find their way to the heart of these initiatives.
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