Patient-Informed Value Elements in Cost-Effectiveness Analyses of Major Depressive Disorder Treatment: A Literature Review and Synthesis.

OBJECTIVES: Prior work identified 6 key value elements (attributes of treatment and desired outcomes) for individuals living with major depressive disorder (MDD) in managing their condition: mode of treatment, time to treatment helpfulness, MDD relief, quality of work, interaction with others, and affordability. The objective of our study was to identify whether previous cost-effectiveness analyses (CEAs) for MDD treatment addressed any of these value elements. A secondary objective was to identify whether any study engaged patients, family members, and caregivers in the model development process. METHODS: We conducted a systematic literature review to identify published model-based CEAs. We compared the elements of the published studies with the MDD patient value elements elicited in prior work to identify gaps and areas for future research. RESULTS: Of 86 published CEAs, we found that 7 included patient out-of-pocket costs, and 32 included measures of productivity, which were both priorities for individuals with MDD. We found that only 2 studies elicited measures from patients for their model, and 2 studies engaged patients in the modeling process. CONCLUSIONS: Published CEA models for MDD treatment do not regularly include value elements that are a priority for this patient population nor do they include patients in their modeling process. Flexible models that can accommodate elements consistent with patient experience are needed, and a multistakeholder engagement approach would help accomplish this.

A Patient Interview-Based Needs Assessment and Evaluation of Experiences with Periviable Pregnancies.

Given the complex ethical and emotional nature of births during the periviable period for both health care providers and families, this investigation sought to identify strategies for improved counseling of pregnant patients facing preterm birth at the cusp of viability at a tertiary care center in Hawai'i. As part of a larger quality improvement project on periviability counseling, 10 patients were interviewed during either individual or small focus groups using a progression of hypothetical scenarios. Interviews were analyzed independently by 3 investigators to identify themes of patient experience and potential areas for improvement when counseling patients who are carrying periviable pregnancies. Several common themes emerged from the interviews. Patients expressed the desire for more information throughout the process delivered in a jargon-free manner with unified messaging from the medical teams, and emotional support. These findings add to a limited body of literature which addresses patient perceptions of interactions with health care providers in the face of uncertainty, particularly in a Pacific Islander population. The authors recommend increasing provider training and developing a more structured process to counsel pregnant women facing periviable pregnancy loss to improve the patient experience.

Inequalities in patients' experiences with cancer care: the role of economic and health literacy determinants.

BACKGROUND: Patients with fewer socioeconomic and health literacy resources are disadvantaged in their access and use of healthcare, which may give rise to worse experiences with care and thus inequalities in patient experiences. However, only a limited number of studies have examined how socioeconomic and health literacy factors shape inequalities in patients' experiences with cancer care. OBJECTIVE: To examine whether patients' experiences with cancer care differ according to their economic status and health literacy. METHODS: Secondary analysis of data on 2789 adult patients diagnosed with cancer from the Swiss Cancer Patient Experiences-2 (SCAPE-2) study, a cross-sectional survey conducted in eight hospitals across Switzerland from September 2021 to February 2022. Regression analysis was applied to examine the independent effect of patients' economic status and health literacy on various outcomes of experiences with cancer care, covering eight different dimensions of patient-centred care, controlling for confounding factors. RESULTS: Adjusted regression analysis showed that patients with lower economic status reported significantly worse experiences with cancer care in 12 out of 29 specific care experiences, especially in the dimensions of 'respect for patients' preferences' and 'physical comfort' where all items of experiences were associated with economic status. Additionally, lower health literacy was associated with worse patient experiences in 23 specific care experiences. All items in the dimensions of 'respect for patients' preferences', 'physical comfort' and 'emotional support' were associated with health literacy. DISCUSSION: This study revealed significant inequalities in experiences with cancer care shaped by the economic status and health literacy of patients across different dimensions of patient-centred care. It is essential to address the needs of more disadvantaged patients who face obstacles in their access and use of the healthcare system, not only to mitigate inequalities in cancer care but also to avoid inequalities in health outcomes.

Evaluation of Unsolicited Feedback from Patients with Cancer and Their Families as a Strategy to Improve Cancer Care Delivery.

BACKGROUND: Unsolicited patient feedback (compliments and complaints) should allow the healthcare system to address and improve individual and overall patient, family, and staff experiences. We evaluated feedback at a tertiary cancer centre to identify potential areas for optimizing care delivery. METHODS: unsolicited feedback submitted to the Patient Relations Department, relating to the Divisions of Medical and Radiation Oncology, at the Ottawa Hospital, was analyzed. RESULTS: Of 580 individual reports submitted from 2016 to 2022, patient demographics were available for 97% (563/580). Median patient age was 65 years (range 17-101), and 53% (301/563) were female. The most common cancer types were breast (127/545, 23%) and gastrointestinal (119/545, 22%) malignancies, and most (64%, 311/486) patients had metastatic disease. Feedback was submitted mainly by patients (291/579, 50%), and predominantly negative (489/569, 86%). The main reasons for complaints included: communication (29%, 162/566) and attitude/conduct of care (28%, 159/566). While feedback rates were initially stable, an increase occurred from 2019 to 2021. CONCLUSIONS: Unsolicited feedback remains mostly negative, and relates to physician communication. If we are to drive meaningful changes in care delivery, more standardized means of assessing feedback and implementation strategies are needed. In addition, in an era of increased healthcare provider burnout, strategies to enhance formal positive feedback are also warranted.

Psychometrics of the modified Family-Centered Care Assessment short version for childhood obesity.

Background: Incorporating principles of family-centered care into pediatric weight management interventions can improve the effectiveness and quality of treatment and reduce attrition rates. To assess the family-centeredness of interventions, reliable, valid, and easy-to-administer scales are needed. The purpose of the study was to develop a shortened version of the modifed Family Centered Care Assessment (mFCCA) and assess its psychometric properties. Methods: The mFCCA, a scale to assess the family-centeredness of interventions for childhood obesity, was administered to families following the Connect for Health randomized control trial evaluating the effectiveness of a primary care-based pediatric weight management intervention. We iteratively removed items from the mFCCA and used Rasch modeling to examine the reliability and validity of the shortened scale. Results: We included data from 318 parents and the exploratory factor analysis showed the presence of a single factor. The results of the Rasch modeling demonstrated acceptable internal consistency of the scale (0.7) and strong validity as evidenced by the overall model fit and range of item difficulty. Following the psychometric analyses, we reduced the number of items from 24 to 8 items. Conclusions: The mFCCA short version demonstrates good psychometrics and can be used to evaluate the family-centeredness of childhood obesity interventions with reduced participant burden, thereby improving outcomes for children with obesity. Trial registration: Clinicaltrials.gov NCT02124460 registered on April 24, 2014.

Pharmaceutical and biotech industry perspectives on optimizing patient experience and treatment adherence through subcutaneous drug delivery design.

Subcutaneous (SC) drug delivery can be a safe, effective alternative to the traditional intravenous route of administration, potentially offering notable advantages for both patients and healthcare providers. The SC Drug Development & Delivery Consortium convened in 2018 to raise awareness of industry challenges to advance the development of patient-centric SC drug delivery strategies. The SC Consortium identified better understanding of patient preferences and perspectives as necessary to optimize SC product design attributes and help guide design decisions during SC product development. This manuscript provides a comprehensive overview of patient-centric factors for consideration in the SC drug delivery design and development process with the aim of establishing a foundation of existing knowledge for patient experiences related to SC drug delivery. This overview is informed by the outcomes of a multi-step survey of Consortium members and key pharmaceutical stakeholders. Framed in the context of the patient's treatment journey, the survey findings offer future perspectives to fill data gaps to advance patient-centric SC drug delivery.

Bone-anchored prostheses for transfemoral amputation: a systematic review of outcomes, complications, patient experiences, and cost-effectiveness.

Introduction: Bone-anchored prostheses (BAP) are an advanced reconstructive surgical approach for individuals who had transfemoral amputation and are unable to use the conventional socket-suspension systems for their prostheses. Access to this technology has been limited in part due to the lag between the start of a new procedure and the availability of evidence that is required before making decisions about widespread provision. This systematic review presents as a single resource up-to-date information on aspects most relevant to decision makers, i.e., clinical efficacy, safety parameters, patient experiences, and health economic outcomes of this technology. Methods: A systematic search of the literature was conducted by an information specialist in PubMed, MEDLINE, Embase, CINAHL, Cochrane Library, the Core Collection of Web of Science, CADTH's Grey Matters, and Google Scholar up until May 31, 2023. Peer-reviewed original research articles on the outcomes of clinical effectiveness (health-related quality of life, mobility, and prosthesis usage), complications and adverse events, patient experiences, and health economic outcomes were included. The quality of the studies was assessed using the Oxford Centre for Evidence-Based Medicine Levels of Evidence and ROBINS-I, as appropriate. Results: Fifty studies met the inclusion criteria, of which 12 were excluded. Thirty-eight studies were finally included in this review, of which 21 reported on clinical outcomes and complications, 9 case series and 1 cohort study focused specifically on complications and adverse events, and 2 and 5 qualitative studies reported on patient experience and health economic assessments, respectively. The most common study design is a single-arm trial (pre-/post-intervention design) with varying lengths of follow-up. Discussion: The clinical efficacy of this technology is evident in selected populations. Overall, patients reported increased health-related quality of life, mobility, and prosthesis usage post-intervention. The most common complication is a superficial or soft-tissue infection, and more serious complications are rare. Patient-reported experiences have generally been positive. Evidence indicates that bone-anchored implants for prosthesis fixation are cost-effective for those individuals who face significant challenges in using socket-suspension systems, although they may offer no additional advantage to those who are functioning well with their socket-suspended prostheses.

Language-discordant care in pediatric neurosurgery: parent and provider perspectives on challenges and multilevel solutions to reduce disparities.

OBJECTIVE: In the United States, Spanish is the second most spoken language, with nearly 42 million individuals speaking Spanish at home. Spanish speakers have been noted to have higher rates of unfavorable neurosurgical outcomes; however, to the authors' knowledge, no study has explored the experiences of patients, caregivers, and providers receiving or delivering neurosurgical care in language-discordant settings. In this study, the authors sought to identify challenges faced by pediatric neurosurgery providers and Spanish-speaking parents communicating with a language barrier and propose solutions to address those challenges. METHODS: Spanish-speaking parents and pediatric neurosurgery providers were invited to participate in semistructured interviews. Purposeful sampling was used to recruit Spanish-speaking parents whose child had recently undergone neurological surgery at the authors' institution and to identify pediatric neurosurgery clinical team members to interview, including physicians, advanced practice providers, and interpreters. Codes were inductively developed and applied to transcripts by two researchers. Thematic analysis was conducted to identify challenges faced by parents and providers. RESULTS: Twenty individuals were interviewed, including parents (n = 8), advanced practice providers (n = 5), physicians (n = 3), interpreters (n = 2), a social worker (n = 1), and a nurse (n = 1). Three challenges were identified. 1) Compared with English-speaking parents, providers noted that Spanish-speaking parents were less likely to ask questions or raise new concerns. Concurrently, Spanish-speaking parents expressed a desire to better understand their child's future medical needs, care, and development. 2) There is a dearth of high-quality resources available in the Spanish language to supplement patient and parent neurosurgical education. 3) Both parents and providers invariably prefer in-person interpreters; however, their availability is limited. CONCLUSIONS: Three challenges were identified by Spanish-speaking parents of pediatric neurosurgery patients and providers when receiving or delivering care through a language barrier. The authors discuss multilevel solutions that, if deployed, could directly address these shared challenges. Furthermore, optimizing communication may help mitigate the disparities experienced by non-English-speaking Hispanic/Latino individuals when receiving neurosurgical care.

Is Primary Care Patient Experience Associated with Provider-Patient Language Concordance and Use of Interpreters for Spanish-preferring Patients: A Systematic Literature Review.

BACKGROUND: Healthcare provided by a bilingual provider or with the assistance of an interpreter improves care quality; however, their associations with patient experience are unknown. We reviewed associations of patient experience with provider-patient language concordance (LC) and use of interpreters for Spanish-preferring patients. METHOD: We reviewed articles from academic databases 2005-2023 following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and Joanna Briggs Institute Checklists to rate study quality. We reviewed 217 (of 2193) articles, yielding 17 for inclusion. RESULTS: Of the 17 included articles, most articles focused on primary (n = 6 studies) or pediatric care (n = 5). All were cross-sectional, collecting data by self-administered surveys (n = 7) or interviews (n = 4). Most assessed the relationship between LC or interpreter use and patient experience by cross-sectional associations (n = 13). Two compared subgroups, and two provided descriptive insights into the conversational content (provider-interpreter-patient). None evaluated interventions, so evidence on effective strategies is lacking. LC for Spanish-preferring patients was a mix of null findings (n = 4) and associations with better patient experience (n = 3) (e.g., receiving diet/exercise counseling and better provider communication). Evidence on interpreter use indicated better (n = 2), worse (n = 2), and no association (n = 2) with patient experience. Associations between Spanish-language preference and patient experience were not significant (n = 5) or indicated worse experience (n = 4) (e.g., long waits, problems getting appointments, and not understanding nurses). CONCLUSION: LC is associated with better patient experience. Using interpreters is associated with better patient experience but only with high-quality interpreters. Strategies are needed to eliminate disparities and enhance communication for all Spanish-preferring primary care patients, whether with a bilingual provider or an interpreter.

Experience of pediatric to adult transition in immunology services: patient experience questionnaire and micro-costing analysis.

The effective transition from pediatric to adult care for individuals with chronic medical conditions should address the medical, psychosocial and educational needs of the cohort. The views and experiences of service users and their families are an integral component of service development. This study sought to evaluate the current provision of transition services from pediatric immunology services to adult immunology services for patients with a diagnosis of an inborn error of immunity at St. James's Hospital, Dublin. We gathered patient perspectives on the experience of the transition process using a structured survey. In addition, we adopted a micro-costing technique to estimate the cost of implementing the current standard of care for these patients. Results of a micro-costing analysis suggest that the most significant component of cost in assessing these patients is on laboratory investigation, an area where there is likely significant duplication between pediatric and adult care. Perspectives from patients suggested that the transition period went well for the majority of the cohort and that they felt ready to move to adult services, but the transition was not without complications in areas such as self-advocacy and medication management. The transition process may benefit from enhanced communication and collaboration between pediatric and adult services.

Lower urinary tract symptoms in men: the TRIUMPH cluster RCT.

Background: Conservative therapies are recommended as initial treatment for male lower urinary tract symptoms. However, there is a lack of evidence on effectiveness and uncertainty regarding approaches to delivery. Objective: The objective was to determine whether or not a standardised and manualised care intervention delivered in primary care achieves superior symptomatic outcome for lower urinary tract symptoms to usual care. Design: This was a two-arm cluster randomised controlled trial. Setting: The trial was set in 30 NHS general practice sites in England. Participants: Participants were adult men (aged ≥ 18 years) with bothersome lower urinary tract symptoms. Interventions: Sites were randomised 1 : 1 to deliver the TReatIng Urinary symptoms in Men in Primary Health care using non-pharmacological and non-surgical interventions trial intervention or usual care to all participants. The TReatIng Urinary symptoms in Men in Primary Health care using non-pharmacological and non-surgical interventions intervention comprised a standardised advice booklet developed for the trial from the British Association of Urological Surgeons' patient information sheets, with patient and expert input. Patients were directed to relevant sections by general practice or research nurses/healthcare assistants following urinary symptom assessment, providing the manualised element. The healthcare professional provided follow-up contacts over 12 weeks to support adherence to the intervention. Main outcome measures: The primary outcome was the validated patient-reported International Prostate Symptom Score 12 months post consent. Rather than the minimal clinically important difference of 3.0 points for overall International Prostate Symptom Score, the sample size aimed to detect a difference of 2.0 points, owing to the recognised clinical impact of individual symptoms. Results: A total of 1077 men consented to the study: 524 in sites randomised to the intervention arm (n = 17) and 553 in sites randomised to the control arm (n = 13). A difference in mean International Prostate Symptom Score at 12 months was found (adjusted mean difference of -1.81 points, 95% confidence interval -2.66 to -0.95 points), with a lower score in the intervention arm, indicating less severe symptoms. Secondary outcomes of patient-reported urinary symptoms, quality of life specific to lower urinary tract symptoms and perception of lower urinary tract symptoms all showed evidence of a difference between the arms favouring the intervention. No difference was seen between the arms in the proportion of urology referrals or adverse events. In qualitative interviews, participants welcomed the intervention, describing positive effects on their symptoms, as well as on their understanding of conservative care and their attitude towards the experience of lower urinary tract symptoms. The interviews highlighted that structured, in-depth self-management is insufficiently embedded within general practitioner consultations. From an NHS perspective, mean costs and quality-adjusted life-years were similar between trial arms. The intervention arm had slightly lower mean costs (adjusted mean difference of -£29.99, 95% confidence interval -£109.84 to £22.63) than the usual-care arm, and a small gain in quality-adjusted life-years (adjusted mean difference of 0.001, 95% confidence interval -0.011 to 0.014). Conclusions: The intervention showed a small, sustained benefit for men's lower urinary tract symptoms and quality of life across a range of outcome measures in a UK primary care setting. Qualitative data showed that men highly valued the intervention. Intervention costs were marginally lower than usual-care costs. Limitations of the study included that trial participants were unmasked, with limited diversity in ethnicity and deprivation level. Additional research is needed to assess the applicability of the intervention for a more ethnically diverse population.. Trial registration: This trial is registered as ISRCTN11669964. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: 16/90/03) and is published in full in Health Technology Assessment; Vol. 28, No. 13. See the NIHR Funding and Awards website for further award information.

Urinary problems among men become more common with age. Nearly one-third of all men aged > 65 years experience some urinary symptoms, which can have a substantial effect on their daily lives. Symptoms include needing to pass urine more often, urgently or during the night, and difficulties in passing urine. Men are usually diagnosed and treated by their general practitioner, and should be offered advice on controlling their symptoms themselves (e.g. lifestyle changes and exercises) before trying tablets or surgery. However, it is not known how helpful such advice is, and how general practices can effectively provide it. Thirty general practices in the West of England and Wessex took part in the study. Practices were split into two groups, with each practice providing either the TReatIng Urinary symptoms in Men in Primary Health care using non-pharmacological and non-surgical interventions care package or the practice's usual care to all of its patients in the trial. The TReatIng Urinary symptoms in Men in Primary Healthcare using nonpharmacological and non-surgical interventions care package included a booklet of advice to help control urinary symptoms, with a nurse or healthcare assistant directing men to relevant sections according to their symptoms, and providing follow-up contacts. We mainly assessed the benefits of the TReatIng Urinary symptoms in Men in Primary Healthcare using nonpharmacological and non-surgical interventions care package, compared with usual care, by using a questionnaire on urinary symptoms completed by participants. A total of 1077 men with urinary symptoms that bothered them joined the study. The main result was that men reported greater improvement in urinary symptoms with the TRIUMPH care package than with usual care, 12 months after joining the study. We also found that men receiving the TRIUMPH care package had a slight improvement in quality of life and outlook on their urinary symptoms. There was no difference between the two groups in the number of patients referred to hospital for treatment, the type, number and severity of side effects or cost to the NHS. Overall, the TRIUMPH care package was more effective in treating men with urinary symptoms than usual care by their general practice.

Race, Ethnicity, and Other Patient and Clinical Encounter Characteristics Associated with Patient Experiences of Access to Care.

The Press Ganey (PG) Outpatient Medical Practice Survey measures patients' experiences of healthcare access in the U.S. We aimed to identify differences in experiences of access to care by patient race, ethnicity, and other sociodemographic characteristics, an important first step in informing health policy and ensuring equitable healthcare delivery. We performed a cross-sectional analysis of PG surveys for adult outpatient visits within the University of Pennsylvania Health System from 2014-2017, including 119,373 unique patients. Compared with White patients, Black (odds ratio [OR] 0.84; 95% confidence interval [CI] 0.80-0.87), Asian (OR 0.62; 95% CI 0.58-0.66), and other/unknown race patients (OR 0.83; 95% CI 0.72-0.94) were each less likely to report the maximum score for timely access to care. Patients of all minoritized groups, as well as those whose primary language was not English, reported lower scores in secondary access measures related to communication and respect, compared to White and primarily English-speaking patients, respectively. Efforts to improve the experience of access to care among racial and ethnic minoritized patients are imperative to achieve equity in healthcare delivery.

Narrative comments about pediatric inpatient experiences yield substantial information beyond answers to closed-ended CAHPS survey questions.

PURPOSE: Adults' comments on patient experience surveys explain variation in provider ratings, with negative comments providing more actionable information than positive comments. We investigate if narrative comments on the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) survey of inpatient pediatric care (Child HCAHPS) account for global perceptions of the hospital beyond that explained by reports about specific aspects of care. METHODS: We analyzed 545 comments from 927 Child HCAHPS surveys completed by parents and guardians of hospitalized children with at least a 24-h hospital stay from July 2017 to December 2020 at an urban children's hospital. Comments were coded for valence (positive/negative/mixed) and actionability and used to predict Overall Hospital Rating and Willingness to Recommend the Hospital along with Child HCAHPS composite scores. RESULTS: Comments were provided more often by White and more educated respondents. Negative comments and greater actionability of comments were significantly associated with Child HCAHPS global rating measures, controlling for responses to closed-ended questions, and child and respondent characteristics. Each explained an additional 8% of the variance in respondents' overall hospital ratings and an additional 5% in their willingness to recommend the hospital. CONCLUSIONS: Child HCAHPS narrative comment data provide significant additional information about what is important to parents and guardians during inpatient pediatric care beyond closed-ended composites. PRACTICE IMPLICATIONS: Quality improvement efforts should include a review of narrative comments alongside closed-ended responses to help identify ways to improve inpatient care experiences. To promote health equity, comments should be encouraged for racial-and-ethnic minority patients and those with less educational attainment.

Making Oneself "Fit": Community Perspectives on Disaggregated Race and Ethnicity Data Collection and Reporting in Healthcare Settings.

Patient race/ethnicity data collection in most U.S. health systems abide by federal standards, determined by the federal Office of Management and Budget. Yet, decades of research show that reliance on these categories alone limits understanding of within-group health disparities, systematically erasing key groups from health data. Because granular race/ethnicity data is complex and patients may be hesitant to disclose this personal information, it is important for health leaders to consider community perspectives when making decisions about race/ethnicity data procedures. As such, this study uses community focus groups to understand: (1) how individuals representing different racial/ethnic identities perceive the collection of race/ethnicity in healthcare settings; (2) differences in opinions between disaggregated race/ethnicity data collection instruments and those using federal standards; and (3) recommended practices for collecting race/ethnicity from patients. Participants self-selected into 13 focus groups and one key informant interview based on the race/ethnicity with which they most closely identified. Audio recordings from these groups were transcribed and evaluated using thematic content analysis. Among the 83 total participants in this study, there was a strong preference for more flexible and specific options for self-identifying race/ethnicity in healthcare settings. Participants also felt comfortable disclosing granular race/ethnicity to health providers but expressed discomfort with disclosing this information for other purposes. Recommendations for healthcare leaders include ensuring patients receive detailed communication about race/ethnicity data use and purpose, allowing multiple category selection, keeping the list of disaggregated response options short so as to not overwhelm patients, and providing a free text option to ensure inclusivity.

Evidence on bringing specialised care to the primary level-effects on the Quadruple Aim and cost-effectiveness: a systematic review.

BACKGROUND: To achieve the Quadruple Aim of improving population health, enhancing the patient experience of care, reducing costs and improving professional satisfaction requires reorganisation of health care. One way to accomplish this aim is by integrating healthcare services on different levels. This systematic review aims to determine whether it is cost-effective to bring a hospital specialist into primary care from the perspectives of commissioners, patients and professionals. METHODS: The review follows the PRISMA guidelines. We searched PubMed, Scopus and EBSCO (CINAHL and Academic Search Ultimate) for the period of 1992-2022. In total, 4254 articles were found, and 21 original articles that reported on both quality and costs, were included. The JBI and ROBINS-I tools were used for quality appraisal. In data synthesis, vote counting and effect direction plots were used together with a sign test. The strength of evidence was evaluated with the GRADE. RESULTS: Cost-effectiveness was only measured in two studies, and it remains unclear. Costs and cost drivers for commissioners were lower in the intervention in 52% of the studies; this proportion rose to 67% of the studies when cost for patients was also considered, while health outcomes, patient experience and professional satisfaction mostly improved but at least remained the same. Costs for the patient, where measured, were mainly lower in the intervention group. Professional satisfaction was reported in 48% of the studies; in 80% it was higher in the intervention group. In 24% of the studies, higher monetary costs were reported for commissioners, whereas the clinical outcomes, patient experience and costs for the patient mainly improved. CONCLUSIONS: The cost-effectiveness of the hospital specialist in primary care model remains inconclusive. Only a few studies have comprehensively calculated costs, evaluating cost drivers. However, it seems that when the service is well organised and the population is large enough, the concept can be profitable for the commissioner also. From the patient's perspective, the model is superior and could even promote equity through improved access. Professional satisfaction is mostly higher compared to the traditional model. The certainty of evidence is very low for cost and low for quality. TRIAL REGISTRATION: PROSPERO CRD42022325232, 12.4.2022.

Review of Muslim Patient Needs and Its Implications on Healthcare Delivery.

BACKGROUND: In the rapidly changing environment of healthcare, striving toward health equity and providing patient-centered care is imperative to the patient's experience. To achieve these goals, a comprehensive understanding of the diverse patient populations seeking these services, their needs, and the multitude of religious, cultural, and structural elements that impact their well-being is required. Muslim patients represent a considerable demographic, both in number and complexity of religious and cultural beliefs and practices. This scoping review examines the intersection of religion and cultural values with healthcare delivery in the context of the Muslim patient experience. OBJECTIVES: The objective of this review is to identify key concepts and challenges that impact the Muslim patient experience. SEARCH METHODS: The research databases Cochrane Library, OVID Medline, and PubMED were used to conduct a comprehensive systemic review of original, empirical peer-reviewed publications with the following search terms: "Muslim healthcare," "Muslim patient," and "Muslim experience." SELECTION CRITERIA: Inclusion and exclusion criteria were used to narrow down articles to those that addressed Muslim patient needs and their healthcare experience. RESULTS: A total of 21 articles met the criteria of this scoping review. Five central topics were identified during thematic analysis: Ramadan and Fasting, Barriers in the Patient-Physician Relationship, Trauma and Perceived Discrimination, Mental Health Awareness and Stigma, and Awareness of Advanced Care Planning. CONCLUSION: This scoping review demonstrates that in order to provide patient-centered care addressing the unique needs of Muslim patients, religious and cultural values need to be explored under the frameworks of cultural humility and structural competency.

Patients' experience of accessing hepatitis C treatment through the Myanmar national hepatitis C treatment program: a qualitative evaluation.

BACKGROUND: Globally, 56.8 million people are living with hepatitis C and over three-quarters of those reside in low and middle-income countries (LMICs). Barriers and enablers to hepatitis C care among people who inject drugs in high-income countries are well documented. However, there is scant literature describing the patient experience in LMICs. Understanding the barriers and enablers to care from the patient perspective is important to inform service refinements to improve accessibility and acceptability of hepatitis C care. METHODS: We conducted a qualitative evaluation of the patient experience of accessing the national hepatitis C program at eight hospital sites in Myanmar. Semi-structured interviews were conducted with four to five participants per site. Interview data were analysed thematically, with deductive codes from Levesque et al.'s (2013) Framework on patient-centred access to healthcare. RESULTS: Across the eight sites, 38 participants who had completed treatment were interviewed. Barriers to accessing care were mostly related to attending for care and included travel time and costs, multiple appointments, and wait times. Some participants described how they did not receive adequate information on hepatitis C, particularly its transmission routes, and on the level of cirrhosis of their liver and what they were required to do after treatment (i.e. reduce alcohol consumption, liver cirrhosis monitoring). Many participants commented that they had few or no opportunities to ask questions. Provision of treatment at no cost was essential to accessibility, and gratitude for free treatment led to high acceptability of care, even when accessing care was inconvenient. CONCLUSIONS: These findings highlight the importance of streamlining and decentralising health services, adequate human resourcing and training, and affordable treatment in maximising the accessibility and acceptability of hepatitis C care in LMICs. Findings from this work will inform future service delivery refinements for national program and other decentralised programs to improve accessibility and acceptability of hepatitis C care in Myanmar.

Patient Engagement and Patient Experience Data in Regulatory Review and Health Technology Assessment: A Global Landscape Review.

BACKGROUND: Working with patients through meaningful patient engagement (PE) and incorporating patient experience data (PXD) is increasingly important in medicines and medical device development. However, PE in the planning, organization, generation, and interpretation of PXD within regulatory and health technology assessment (HTA) decision-making processes remains challenging. We conducted a global review of the PE and PXD landscape to identify evolving resources by geography to support and highlight the potential of integration of PE and PXD in regulatory assessment and HTA. METHODS: A review of literature/public information was conducted (August 2021-January 2023), led by a multistakeholder group comprising those with lived or professional experience of PE and PXD, to identify relevant regulatory and HTA initiatives and resources reviewed and categorized by geography and focus area. RESULTS: Overall, 53 relevant initiatives/resources were identified (global, 14; North America, 11; Europe, 11; Asia, nine; UK, six; Latin America, one; Africa, one). Most focused either on PE (49%) or PXD (28%); few (11%) mentioned both PE and PXD (as largely separate activities) or demonstrated an integration of PE and PXD (11%). CONCLUSIONS: Our analysis demonstrates increasing interest in PE, PXD, and guidance on their use individually in decision-making. However, more work is needed to offer guidance on maximizing the value of patient input into decisions by combining both PE and PXD into regulatory and HTA processes; the necessity of integrating PE in the design and interpretation of PXD programs should be highlighted. A co-created framework to achieve this integration is part of a future project.

Community Teens' COVID-19 Experience: Implications for Engagement Moving Forward.

Data collected from pediatric primary care settings during the pandemic suggest an increase in internalizing symptoms and disparities in care based upon minoritized identity status(es). To inform care moving forward, the current study characterized the pandemic and related technology usage experiences of teenaged pediatric patients from communities with high hardship indexes. As part of a larger mixed-methods study, 17 teens (Mean age = 15.99 ± .99) and 10 caregivers independently voiced experiences related to the pandemic during remote focus group and interview sessions. Thematic analyses were used to assess qualitative data; descriptive analyses were used to characterize qualitative data. Despite no direct queries about the pandemic, 41% of teens and 40% of caregivers described their lived experiences during the pandemic. Two subthemes emerged within the primary theme of COVID-19: (1) Wellness/Mental Health and (2) Smartphone Use and Utility. Although distress and negative effects were voiced, questionnaire data indicated normative psychosocial functioning for both teen self-report and caregiver proxy report. Informed by the voiced experiences of teens and their caregivers from communities with high hardship indexes, methods for better assessing and managing internalizing symptoms in teen patients are presented. A multi-modal and multi-informant approach that leverages technology to garner information about teens' experiences and deliver care may help improve the well-being of teens in communities systemically burdened with disparities.