Assessment of long-term psychosocial outcomes in N-methyl-D-aspartate receptor encephalitis - the SAPIENCE study protocol.

BACKGROUND: N-methyl-D-aspartate-receptor (NMDAR) encephalitis is a rare neurological autoimmune disease with severe neuropsychiatric symptoms during the acute phase. Despite good functional neurological recovery, most patients continue to experience cognitive, psychiatric, psychological, and social impairments years after the acute phase. However, the precise nature and evolving patterns over time of these long-term consequences remain unclear, and their implications for the well-being and quality of life of predominantly young patients have yet to be thoroughly examined. METHODS: SAPIENCE is a European multi-center (n = 3) prospective observational cohort study studying the long-term cognitive, psychiatric, psychological, and social outcome in patients with NMDAR encephalitis. The study consists of three interconnected levels. Level 1 comprises a qualitative interview and focus groups with patients and their caregivers. Level 2 consists of a condensed form of the interview, standardized questionnaires, and a detailed neuropsychological examination of patients. Level 3 involves an online survey that will be open to patients world-wide and explores patient-reported outcomes (PROMs), and patient-reported experiences (PREMs) in association with clinical and cognitive outcomes. Levels 1 to 3 will progressively contribute developing of structured interviews, survey questions, and treatment guidelines by informing one another. DISCUSSION: SAPIENCE is an in-depth study of the long-term effects of NMDAR encephalitis and bridges the gap between standardized assessments and individual patient experiences, intending to improve patient care and to increase awareness of the psychosocial long-term consequences of the disease. Through collaboration of experts in clinical neurology and social and health psychology across Europe, SAPIENCE aims to create online assessment tools and formulate guidelines for patient-centered post-acute care that will help enhance the quality of life for patients and caregivers.

Approaches for enhancing patient-reported experience measurement with ethnically diverse communities: a rapid evidence synthesis.

BACKGROUND: Patient-reported experience measures (PREMs) are used to drive and evaluate unit and organisational-level healthcare improvement, but also at a population level, these measures can be key indicators of healthcare quality. Current evidence indicates that ethnically diverse communities frequently experience poorer care quality and outcomes, with PREMs data required from this population to direct service improvement efforts. This review synthesises evidence of the methods and approaches used to promote participation in PREMs among ethnically diverse populations. METHODS: A rapid evidence appraisal (REA) methodology was utilised to identify the disparate literature on this topic. A search strategy was developed and applied to three major electronic databases in July 2022 (Medline; PsycINFO and CINAHL), in addition to websites of health agencies in Organisation for Economic Co-operation and Development countries via grey literature searches. A narrative evidence synthesis was undertaken to address the review question. RESULTS: The review resulted in 97 included studies, comprised 86 articles from electronic database searches and 11 articles from the grey literature. Data extraction and synthesis identified five strategies used in PREM instruments and processes to enhance participation among ethnically diverse communities. Strategies applied sought to better inform communities about PREMs, to create accessible PREMs instruments, to support PREMs completion and to include culturally relevant topics. Several methods were used, predominantly drawing upon bicultural workers, translation, and community outreach to access and support communities at one or more stages of design or administration of PREMs. Limited evidence was available of the effectiveness of the identified methods and strategies. PREMs topics of trust, cultural responsiveness, care navigation and coordination were identified as pertinent to and frequently explored with this population. CONCLUSIONS: The findings provide a basis for a maturity model that may guide change to increase participation of ethnically diverse communities in PREMs. In the short-medium term, health systems and services must be able to recognise and respond to cultural and linguistic diversity in the population when applying existing PREMs. In the longer-term, by working in collaboration with ethnically diverse communities, systems and services may co-create adapted or novel PREMs that tackle the factors that currently inhibit uptake and completion among ethnically diverse communities.

Evaluating cancer patient-reported experience measures against health literacy best practices.

PURPOSE: Positive patient experiences can lead to better adherence to cancer treatment and greater patient health outcomes. The primary aim of this descriptive study was to determine whether commonly used cancer PREMs have been developed according to health literacy best practices. The secondary and third aims were to examine the development of PREMs and to assess their comprehensiveness against principles of patient-centered care. METHODS: To assess adherence to best practice literacy principles regarding readability and understandability of commonly used cancer PREMs, three validated readability calculators and a validated instrument were utilized. To better understand how PREMs were developed, data about survey items, patient involvement, and expert consultation were collected. Finally, the Picker framework was used to evaluate the comprehensiveness of PREMs against principles of patient-centered care. RESULTS: Thirty-five PREMs studies met inclusion criteria for the study. The mean reading grade level of cancer PREMs was 9.7 (SD = 0.75, range = 8.2-11.2) with best practice recommendation being a grade 6 reading grade level. Twenty-eight PREMs were rated on understandability, with a mean score of 74% (SD = 10.6, range = 46-93%, with optimal score of greater than 80%). The mean number of items across PREMs was 49 (SD = 31, range = 13-136). Recommendations for the number of items to include in a questionnaire is 25-30 items. Most PREMs (n = 33, 94.3%) asked ≥ 1 double-barreled question. All PREMs addressed ≥ 2 patient-centered care principles. CONCLUSION: Cancer PREMs included in this study did not meet evidence-informed thresholds for readability and understandability. As such, it is possible that there may be gaps in how we understand the care experiences of low health literacy populations. Future development of PREMs should engage patients with low health literacy to ensure their perspectives are accurately captured and that PREMs are designed to meet the needs of all patients.

Factors associated with patients' experience of accessibility to general practice: results from a national survey in Norway.

BACKGROUND: This study aimed to explore the influence of patient-, general practitioners (GP)-, and GP practice-level predictor variables on patient-experienced accessibility to GPs and GP practices. Additionally, we aimed to enhance our understanding of patient-experienced accessibility by analysing the free-text comments from patients who reported lowest accessibility scores to GPs and GP practices. METHODS: We performed a secondary analysis of data from a 2021-2022 national Norwegian survey on patient experiences with their GP and GP practice. We identified seven accessibility-related items including experience and acceptance of regular waiting time and for urgent appointments, time spent with the GP, waiting time in the wating-room, and getting in touch with the GP practice by telephone. A composite accessibility score was computed. Predictor variables consisted of patient's self-reported characteristics, as well as background data about the GP and GP practice from National GP registry. The analysis included multiple linear regression of the composite accessibility score and seven accessibility items. Finally, a qualitative analysis was conducted of free-text survey comments among patients that had a score of 0 (unfavourable) on all the seven accessibility items. RESULTS: The key factor for patient-experienced accessibility to general practice was seeing their own GP, showing a statistically significant positive correlation (p<0.001) across all seven accessibility items and the composite accessibility score in regression analyses. Other associations with positive experience included better self-reported health, and at the GP-level, a specialization in general medicine. Conversely, a negative experience was associated with longer time since the last GP consultation, female patients, and a higher number of GPs at the practice. Qualitative data confirmed accessibility challenges, detailing quantitative scores and highlighted that low accessibility scores were related to difficulties in seeing one's own GP. CONCLUSIONS: This study highlights the importance of continuity between patient and their GP in improving patients' experiences of accessibility to general practice. Several GP and GP practice-level factors were related to patient-reported accessibility. These results can be used to inform initiatives aimed at improving accessibility to general practice.

Patient-driven research priorities for patient-centered measurement.

BACKGROUND: Patient-centred measurement (PCM) emphasizes a holistic approach wherein the voices of patients are reflected in the standardized use of patient-reported outcome and experience measures and are represented throughout the continuum of measurement activities. Given the challenges of routinely integrating patient self-reports into clinical care decisions, the perspectives of all healthcare system stakeholders, especially patients, is necessary to advance the science of PCM. The purpose of the analysis we report on here was to identify patient-driven research priorities for advancing the science of PCM. METHODS: We analyzed data from seven focus groups that were conducted across British Columbia, Canada and that included a total of 73 patients, using qualitative inductive analysis and constant comparative methods. RESULTS: We found that the patients conveyed a desire for PCM to contribute to healthcare decisions, specifically that their individual healthcare needs and related priorities as they see them are always front and centre, guiding all healthcare interactions. The patients' commentaries highlighted intersecting priorities for research on advancing the science of PCM that would help transform care by (1) enhancing the patient-provider relationship, (2) giving voice to patients' stories, (3) addressing inclusivity, (4) ensuring psychological safety, (5) improving healthcare services and systems to better meet patient needs, and (6) bolstering healthcare system accountability. CONCLUSIONS: These priorities provide direction for future research efforts that would be positioned to make progress towards better health, better care, and better use of resources for individuals and for society.

Healthcare perceptions of persons with traumatic brain injuries across providers: shortcomings in the chronic phase of care.

OBJECTIVE: This investigation sought to examine the perceptions of individuals with mild, moderate, and severe traumatic brain injury (TBIs) toward healthcare providers across rehabilitation contexts (acute, rehabilitation, and chronic). METHODS: The mCARE-TBI survey was distributed via Qualtrics throughout the US and Canada. Sixty-four survey responses met criteria for analysis. Participants were ≥18 years old, one-year post onset, reported no unrelated neurological deficits prior to the single TBI, and reported no prior diagnosed psychiatric disorders. The mCARE was the primary outcome measure. Comparisons were made between provider ratings on each question. RESULTS: Significant differences were found between chronic-phase care, compared to acute care and rehabilitation. Group differences were found in transitioning home after discharge and in between each therapy discipline and both nurses and doctors, as well as for really listening and pairwise differences between therapy disciplines and both nurses and doctors. Group effects were found for showing compassion and care and being positive. CONCLUSIONS: All disciplines need to improve communication, and transition care/discharge planning. Dismissal of ongoing impairments continues to be an area of perceived concern with doctors in particular. Communication training is needed, particularly for nurses and doctors.

Effectiveness of Telemedicine for Musculoskeletal Disorders: Umbrella Review.

BACKGROUND: Several systematic reviews (SRs) assessing the use of telemedicine for musculoskeletal conditions have been published in recent years. However, the landscape of evidence on multiple clinical outcomes remains unclear. OBJECTIVE: We aimed to summarize the available evidence from SRs on telemedicine for musculoskeletal disorders. METHODS: We conducted an umbrella review of SRs with and without meta-analysis by searching PubMed and EMBASE up to July 25, 2022, for SRs of randomized controlled trials assessing telemedicine. We collected any kind of patient-reported outcome measures (PROMs), patient-reported experience measures (PREMs), and objective measures, including direct and indirect costs. We assessed the methodological quality with the AMSTAR 2 tool (A Measurement Tool to Assess systematic Reviews 2). Findings were reported qualitatively. RESULTS: Overall, 35 SRs published between 2015 and 2022 were included. Most reviews (n=24, 69%) were rated as critically low quality by AMSTAR 2. The majority of reviews assessed "telerehabilitation" (n=29) in patients with osteoarthritis (n=13) using PROMs (n=142 outcomes mapped with n=60 meta-analyses). A substantive body of evidence from meta-analyses found telemedicine to be beneficial or equal in terms of PROMs compared to conventional care (n=57 meta-analyses). Meta-analyses showed no differences between groups in PREMs (n=4), while objectives measures (ie, "physical function") were mainly in favor of telemedicine or showed no difference (9/13). All SRs showed notably lower costs for telemedicine compared to in-person visits. CONCLUSIONS: Telemedicine can provide more accessible health care with noninferior results for various clinical outcomes in comparison with conventional care. The assessment of telemedicine is largely represented by PROMs, with some gaps for PREMs, objective measures, and costs. TRIAL REGISTRATION: PROSPERO CRD42022347366; https://osf.io/pxedm/.

Engaging primary care professionals in OECD's international PaRIS survey: a documentary analysis.

Healthcare professionals have first-hand experience with patients in clinical practice and the dynamics in the healthcare system, which can be of great value in the design, implementation, data analysis and dissemination of research study results. Primary care professionals are particularly important as they provide first contact, accessible, coordinated, comprehensive and continuous people-focused care. However, in-depth examination of the engagement of health professionals in health system research and planning activities-how professionals are engaged and how this varies across national contexts- is limited, particularly in international initiatives. There is a need to identify gaps in the planning of engagement activities to inform the design and successful implementation of future international efforts to improve the responsiveness of health systems to the changing needs of patients and professionals. The aim of this study was to explore how primary care professionals were engaged in the design and implementation plans of an international health policy study led by the Organisation for Economic Co-operation and Development (OECD). The OECD's international PaRIS survey measures and disseminates information on patient-reported outcome and experience measures (PROMs and PREMs) of people living with chronic conditions who are managed in primary care. A documentary analysis of 17 written national implementation plans (country roadmaps) was conducted between January and June 2023. Two reviewers independently performed the screening and data abstraction and resolved disagreements by discussion. We reported the intended target primary care professionals, phase of the study, channel of engagement, level of engagement, and purpose of engagement. All 17 countries aimed to engage primary care professionals in the execution plans for the international PaRIS survey. While organisations of primary care professionals, particularly of family doctors, were the most commonly targeted group, variation was found in the timing of engagement activities during the different phases of the study and in the level of engagement, ranging from co-development (half of the countries co-developed the survey together with primary care professionals) to one-off consultations with whom. International guidance facilitated the participation of primary care professionals. Continuous collaborative efforts at the international and national levels can foster a culture of engagement with primary care organisations and individual professionals and enhance meaningful engagement of primary care professionals.

Factors associated with patients' experience of access to their multidisciplinary primary health care clinic: A multilevel analysis.

BACKGROUND: Understanding patients' experiences accessing primary health care (PHC) is necessary to improve service organisation. This study aims to examine individual, organisational, and contextual factors associated with patients' experience of accessing the multidisciplinary PHC clinic to which they are attached. METHODS: This cross-sectional study builds on survey data collected in multidisciplinary PHC clinics located in 14 regions in the province of Quebec (Canada). Between September 2022 and June 2023, an online questionnaire was sent to patients with an email contact and attached to a family physician. Two patient-reported experience measures were assessed: (1) difficulty obtaining an appointment with their regular family physician or nurse practitioner and (2) perceived unmet healthcare needs. A self-reported online questionnaire based on the advanced access model was also sent to PHC professionals and administrative staff to assess the use of advanced access strategies in their practice. Multilevel logistic regression models were fit. Stratified analyses were conducted according to the number of consultations received. FINDINGS: In total, 122,397 patients and 847 family physicians, 97 nurse practitioners and 347 administrative staff nested into 104 clinics answered the survey. In the overall sample, having a chronic disorder was the only individual factor associated with the patient experience of access. Organizational factors including estimation of demand and supply, use of a referral algorithm, and strategies to optimise consultations were associated with a better access experience. Patients from medium size clinics compared to small clinics had better experiences of care for both outcomes. Stratified analysis indicated similar results for patients who consulted at the clinic 1-5 times in the last 12 months as observed in the overall sample. CONCLUSIONS: This study indicates that enhancing organizational processes can improve patients' access experiences.

A National Registry for People With All Stages of Kidney Disease: The National Kidney Foundation (NKF) Patient Network.

RATIONALE & OBJECTIVE: The National Kidney Foundation (NKF) launched the first national US kidney disease patient registry, the NKF Patient Network, that is open to patients throughout the continuum of chronic kidney disease (CKD). The Network provides individualized education and will facilitate patient-centered research, clinical care, and health policy decisions. Here, we present the overall design and the results of a feasibility study that was conducted July through December 2020. STUDY DESIGN: Longitudinal observational cohort study of patient-entered data with or without electronic health care record (EHR) linkage in collaboration with health systems. SETTING & PARTICIPANTS: People with CKD, age≥18 years, are invited through their provider, NKF communications, or national outreach campaign. People self-enroll and share their data through a secure portal that offers individualized education and support. The first health system partner is Geisinger. EXPOSURE: Any cause and stage of CKD, including dialysis and kidney transplant recipients. OUTCOME: Feasibility of the EHR data transfer, participants' characteristics, and their perspectives on usability and content. ANALYTICAL APPROACH: Data were collected and analyzed through the registry portal powered by the Pulse Infoframe healthie 2.0 platform. RESULTS: During the feasibility study, 80 participants completed their profile, and 42 completed a satisfaction survey. Mean age was 57.5 years, 51% were women, 83% were White, and 89% were non-Hispanic or Latino. Of the participants, 60% were not aware of their level of estimated glomerular filtration rate and 91% of their urinary albumin-creatinine ratio. LIMITATIONS: Challenges for the Network are lack of awareness of kidney disease for many with CKD, difficulty in recruiting vulnerable populations or those with low digital readiness, and loss to follow-up, all leading to selection bias. CONCLUSIONS: The Network is positioned to become a national and international platform for real-world data that can inform the development of patient-centered research, care, and treatments.

Patient satisfaction with HIV care service in Spain: results from a cross-sectional patient survey.

Understanding patient satisfaction with healthcare services can help identify patients' unmet needs and increase treatment adherence. This study aimed to evaluate the satisfaction of people living with HIV with overall HIV care service in Navarra, Spain, using a cross-sectional survey. The survey included a patient-reported experience measure (PREMs) consisting of five statements, and participants were also asked to rate the overall care they receive from the HIV service. Chi-square tests were used to detect differences between groups for statements and Kruskal-Wallis rank test was used to detect differences in ranking of the HIV service. The 395 participants gave the HIV service a mean score of 9.3 points out of 10 (standard deviation 1.1). Only 15 (4%) gave a score of under 8 out of 10, and adherence to antiretroviral therapy was associated with higher ranking of the service. Agreement for all five statements ranged from 80% to 96%. Those without stable housing, with mental health problems, and unemployed felt less supported to manage their HIV. These results highlight the need to regularly assess patient satisfaction with the HIV care and that care should account for social and economic factors that could influence health.

The development and cognitive testing of a patient-reported experience measure for patients with chronic pain of temporomandibular disorders.

INTRODUCTION: The importance of the patients' clinical experience has been reinforced several times over the last decade by healthcare organisations and policy makers. Routine gathering of experience data can help in enhancing patient-centred care and provide guidance to quality improvement schemes. Patient-reported experience measures can help to that end. The aim of this study was to develop a patient-reported experience measure to evaluate the experience of patients with temporomandibular disorders while receiving healthcare. METHODS: Input from several sources was utilised to develop the tool; previous literature, patients with temporomandibular disorders, and experts in the field. A qualitative study was conducted following the COnsensus-based Standards for the selection of health Measurement Instruments guidance to generate the items of the questionnaire, which subsequently underwent cognitive testing. RESULTS: Seventeen patients took part in the qualitative study, in addition to six healthcare professionals. The preliminary questionnaire consisted of 28 questions with six response options. CONCLUSIONS: This patient-reported experience measure is a brief tool to evaluate the clinical experience of patients with temporomandibular disorders. Patients' involvement ensured face and content validity of the questionnaire, in addition to the relevance, comprehensibility and comprehensiveness of the items.

Patient reported experiences of Swedish patients being investigated for cancer during the Covid-19 pandemic.

BACKGROUND: Patient reported experiences in individuals being investigated for cancer have been recorded in a nationwide survey in Sweden, providing an opportunity to assess the impact of the Covid-19-pandemic. MATERIAL AND METHODS: Questionnaires from 45920 patients were analyzed to assess the experience of being investigated for cancer. Data from before the Covid-19-pandemic (2018-2019) was compared to data acquired during the pandemic (2020-2021), using chi-square and Wilcoxon rank sum tests. Both, patients who were cleared from suspicion of cancer and those who were diagnosed with cancer were included. RESULTS: Fewer patients in total visited health services during the pandemic. However, patients that did seek help did so to a similar extent during as prior to the pandemic. Patient waiting time was perceived to be shorter during the pandemic and judged as neither too long nor too short by most patients. The emotional support to patients improved during the pandemic, whereas the support to next of kin declined. A majority of patients received the results from the investigation in a meeting with the physician. Although there was a preference for receiving results in a meeting with the physician, the pandemic has brought an increasing interest in receiving results by phone. CONCLUSION: Swedish cancer healthcare has shown resilience during the Covid-19-pandemic, maintaining high patient satisfaction while working under conditions of extraordinary pressure. Patients became more open to alternatives to physical "in person" health care visits which could lead to more digital visits in the future. However, support to significant others demands special attention.

Perspectives of inpatients with palliative care needs, their families, clinicians and key stakeholders on measuring quality of hospital care via patient experience measures: A qualitative study.

BACKGROUND: Globally there are high numbers of patients with palliative care needs receiving care in hospitals. Patient reported experience measures (PREMs) provide useful data to guide improvement work. How to implement PREMs within palliative care populations is unclear. AIM: To explore the perspectives of inpatients with palliative care needs, their family members, and the clinical team regarding the use of a generic PREM as compared with a PREM designed for people with palliative care needs and related implementation factors. DESIGN: A qualitative study was undertaken using semi-structured interviews and focus groups and integrated thematic analysis. SETTING/PARTICIPANTS: Inpatients with palliative care needs, their family members, and clinical team members were recruited from three wards in an Australian metropolitan hospital. RESULTS: Twenty-seven interviews and three focus groups were conducted. Six themes emerged: (1) PREMs for people with palliative care needs ought to be tailored to the needs of this population; (2) PREMs should appraise whether the needs of families have been met in addition to those of patients; (3) PREMs for inpatients with palliative care needs ought to be easy to use, brief and incorporate space for free text alongside each question; (4) Implementation of PREMs for people with palliative care needs ought to consider who administers these, when and how often; (5) PREM data need to be specific enough to inform process change and/or care provision; (6) Patients and families require meaningful feedback to encourage PREM completion. CONCLUSIONS: This study provides practical guidance for PREM selection and implementation to inform improvements to care for inpatients with palliative care needs.

Uptake of pediatric patient-reported outcome and experience measures and challenges associated with their implementation in Alberta: a mixed-methods study.

BACKGROUND: Implementing Patient-reported Outcome Measures (PROMs) and Patient-reported Experience Measures (PREMs) is an effective way to deliver patient- and family-centered care (PFCC). Although Alberta Health Services (AHS) is Canada's largest and fully integrated health system, PROMs and PREMs are yet to be routinely integrated into the pediatric healthcare system. This study addresses this gap by investigating the current uptake, barriers, and enablers for integrating PROMs and PREMs in Alberta's pediatric healthcare system. METHODS: Pediatric clinicians and academic researchers with experience using PROMs and PREMs were invited to complete a quantitative survey. Additionally, key stakeholders were qualitatively interviewed to understand current challenges in implementing pediatric PROMs and PREMs within AHS. Quantitative data gathered from 22 participants were descriptively analyzed, and qualitative data from 14 participants were thematically analyzed. RESULTS: Participants identified 33 PROMs and 6 PREMs showing diversity in the types of pediatric PROMs and PREMs currently being used in Alberta and their mode of administration. The qualitatively identified challenges were associated with patients, family caregivers, and clinicians. The absence of system-level support, such as integration within electronic medical records, is considered a significant system-level challenge. CONCLUSIONS: The significant variation in the types of PROMs and PREMs used, the rationale for their use, and their mode of administration demonstrate the diverse and sporadic use of these measures in Alberta. These findings highlight the need for province-wide uniform implementation of pediatric PROMs and PREMs in Alberta. Our results could benefit healthcare organizations in developing evidence-based PROM and PREM implementation strategies in pediatrics.

Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks.

BACKGROUND: Patient experience is a core component of healthcare quality. Patient-reported experience measures (PREMs) are increasingly used to assess this, but there are few paediatric PREMs. This paper reports the first stage of developing two such measures, one for children and young people (0-18 years) (CYP) with a life-threatening or life-shortening condition (LT/LSC), and one for their parents. It comprised parallel scoping reviews of qualitative evidence on the elements of health service delivery and care that matter to, or impact on, CYP (Review 1) and parents (Review 2). METHODS: Medline and PsychINFO (1/1/2010 - 11/8/2020) and CINAHL Complete (1/1/2010 - 4/7/2020) were searched and records identified screened against inclusion criteria. A thematic approach was used to manage and analyse relevant data, informed by existing understandings of patient/family experiences as comprising aspects of staff's attributes, their actions and behaviours, and organisational features. The objective was to identity the data discrete elements of health service delivery and care which matter to, or impact on, CYP or parents which, when organised under higher order conceptual domains, created separate conceptual frameworks. RESULTS: 18,531 records were identified. Sparsity of data on community-based services meant the reviews focused only on hospital-based (inpatient and outpatient) experiences. 53 studies were included in Review 1 and 64 in Review 2. For Review 1 (CYP), 36 discrete elements of healthcare experience were identified and organized under 8 higher order domains (e.g. staff's empathetic qualities; information-sharing/decision making; resources for socializing/play). In Review 2 (parents), 55 elements were identified and organized under 9 higher order domains. Some domains were similar to those identified in Review 1 (e.g. professionalism; information-sharing/decision-making), others were unique (e.g. supporting parenting; access to additional support). CONCLUSIONS: Multiple and wide-ranging aspects of the way hospital healthcare is organized and delivered matters to and impacts on CYP with LT/LSCs, and their parents. The aspects that matter differ between CYP and parents, highlighting the importance of measuring and understanding CYP and parent experience seperately. These findings are key to the development of patient/parent experience measures for this patient population and the resultant conceptual frameworks have potential application in service development.

Development and pilot of a community low-vision, service-specific Patient-Reported Experience Measure.

PURPOSE: Patient-Reported Experience Measures (PREMs) act to identify the patient's objective experience while receiving care. PREM data can provide feedback to professionals on patients' personal experience of care processes, quality of care and insight into patient expectations. This can support service improvements and person-centeredness of care. Despite this, PREMs are not currently routinely collected for any primary eye care services in Wales, inclusive of the National Low Vision Service Wales (LVSW). The primary aim of this project was to develop and pilot a community low-vision, service-specific, PREM (LVSWPREM). METHODS: The development of the LVSWPREMs was performed in partnership with LVSW service users. Fourteen people attended three successive, 1.5-h online focus groups, and informed the development of a draft of LVSWPREMs inclusive of item generation and face validity. Following several rounds of iterative improvements based on the feedback gathered during the focus groups, LVSWPREM V4.0 was agreed upon and piloted for a period of 3 months within Hywel Dda University Health Board. Reliability of the final LVSWPREM V4.0 was assessed using Cronbach α. RESULTS: The final LVSWPREMs consisted of two parts: (1) LVSW-specific items and (2) a generic PREM tool approved by the Welsh Government for use across National Health Service Wales. Reliability analyses with item deletion were conducted for each construct separately using Cronbach α and were 0.94 and 0.63 for parts 1 and 2, respectively. CONCLUSION: The LVSWPREM is a validated, reliable tool, which can be used to provide information regarding patients' experience of accessing a community-based, low-vision service. Developed in partnership with people with vision impairment, it has the potential to be useful as a means of patient engagement and improvement in the delivery of high-quality healthcare.

Using patient comments from a standardised experience survey to investigate their perceptions and prioritise improvement actions: a thematic and syntactic analysis.

BACKGROUND: Although patient experience surveys flourish in many countries with the aim to improve quality of care, questions remain concerning their ability to become effective drivers of change within institutions. The patient comments from the French national patient experience hospital survey were analysed using an innovative structured approach to characterise patient experience and identify field actions for the institutions. METHODS: The comments were taken from the two open-ended questions comprised in the patient experience survey of the Hospices Civils de Lyon between 2018 and 2019. The comments analysis methodology consisted in three steps: thematic analysis; syntactic analysis; generation of statistics for the creation of a patient journey and prioritisation of sub-themes. The STROBE statement checklist was followed. RESULTS: Over a year, 79.7% of the 7 362 respondents left at least one comment at the end of the survey and were included in the study, for a total of 5 868 surveys and 10 061 comments. These led to the identification of 28 general themes and 184 specific sub-themes. From the patient journey created, 23 sub-themes were prioritised and gathered into four key categories: relationship between patient and staff; environment; surgery and pain management; information and care coordination. For each of them, the actions and expectations formulated by the respondents were described. CONCLUSIONS: The analysis of patient comments obtained from a standardised survey allowed to characterise the patient journey using data that describes patient experience, enabling a prioritisation of actions aiming to improve practice and quality of care at the institution, department, and staff level.

The design, implementation, and impact of an automated patient-reported outcome data collection and adverse event surveillance tool: a randomized trial.

BACKGROUND: Incorporating patient-reported outcome measures into routine clinical care can improve the patient experience, increase engagement, and establish a structured method for gathering adverse event (AE) data. Systematically collecting this information on a large scale can also inform new solutions for removing treatment barriers like medication nonadherence. This study evaluated whether implementing a patient-reported outcome data collection and adverse event surveillance tool would result in greater treatment continuation for patients receiving care on a telehealth platform. METHODS: We used iterative plan-study-do-act cycles to evaluate how this data collection and surveillance tool-a short prompt for patients to provide information on treatment satisfaction and side effects-impacted treatment continuation, the outcome of interest. We tested two cycles in n = 2,000 patients receiving care for erectile dysfunction on a telehealth platform as a randomized controlled trial, and accounted for incidents where true randomization was not possible during implementation. The first cycle tested the tool alone, while the second cycle tested the tool in conjunction with a messaging template system that provided standardized side effect counseling. RESULTS: Compared to patients in the control group, patients in the intervention group were more likely to refill their prescription over the duration of the study period (75% vs. 71%, Kaplan Meier log-rank test, p = 0.04). Receiving standardized counseling as part of the AE response system was positively associated with treatment continuation (p = 0.0005). CONCLUSIONS: Prompting patients to report side effects and outcomes outside of routine clinical visits has the potential to improve quality of care in virtual treatment. TRIAL REGISTRATION: This trial has been retrospectively registered as a clinical trial (ClinicalTrials.gov Identifier: NCT05895539, registered June 8, 2023).

Association of patient experience and the quality of hospital care.

The association between patient experience and the quality of hospital care is controversial. We assess the association between clinical outcomes and patient-reported experience measures (PREMs) in hospitals in Saudi Arabia. Knowledge on this issue informs value-based health-care reforms. A retrospective observational study was conducted in 17 hospitals in Saudi Arabia during the period of 2019-22. Hospital data were collected on PREMs, mortality, readmission, length of stay (LOS), central line-associated bloodstream infection (CLABSI), catheter-associated urinary tract infection (CAUTI), and surgical site infection. Descriptive analysis was used to describe hospital characteristics. Spearman's rho correlation tests were used to assess the correlation between these measures, and multivariate generalized linear mixed model regression analysis was used to study associations while controlling for hospital characteristics and year. Our analysis showed that PREMs were negatively correlated with hospital readmission rate (r = -0.332, P ≤ .01), LOS (r = -0.299, P ≤ .01), CLABSI (r = -0.297, P ≤ .01), CAUTI (r = -0.393, P ≤ .01), and surgical site infection (r = -0.298, P ≤ .01). The results indicated that CAUTI and LOS converged negatively with PREMs (ß = -0.548, P = .005; ß = -0.873, P = .008, respectively) and that larger hospitals tended to have better patient experience scores (ß =0.009, P = .003). Our findings suggest that better performance in clinical outcomes is associated with higher PREM scores. PREMs are not a substitute or surrogate for clinical quality. Yet, PREMs are complementary to other objective measures of patient-reported outcomes, the process of care, and clinical outcomes.