Developing and exploring the validity of a patient reported experience measure for adult inpatient diabetes care.

AIM: To develop and explore the validity of a Patient Reported Experience Measure (PREM) for adult inpatient diabetes care. METHOD: 27 in-depth interviews were conducted to inform the development of the 42-item PREM which was cognitively tested with 10 people. A refined 38-item PREM was piloted with 228 respondents completing a paper (n = 198) or online (n = 30) version. The performance of the PREM was evaluated by exploring (i) uptake/number of responses and (ii) survey validity by investigating whether the PREM data were of adequate quality and delivered useful information. RESULTS: The PREM had low drop-out or missing data rates suggesting it was appropriately constructed. Analysis of item frequencies and variances, and problem score calculations concluded that questions provided sufficient score differentiation. CONCLUSIONS: This new PREM allows for experiences of inpatient diabetes care to be measured, understood and reported on to help identify priority areas for improving care quality.

The first steps in the development of a cancer-specific patient-reported experience measure item bank (PREM-item bank): towards dynamic evaluation of experiences.

OBJECTIVE: Since the implementation of value-based healthcare, there has been a growing emphasis on utilizing patient-reported experience measures (PREMs) to enhance the quality of care. However, the current PREMs are primarily generic and static, whereas healthcare is constantly evolving and encompasses a wide variety of aspects that impact care quality. To continuously improve care requires a dynamic PREM. The aim of this study was to propose an item bank for the establishment of a dynamic and care-specific patient-reported evaluation. METHODS: In co-creation with patients, a mixed methods study was conducted involving: (1) an explorative review of the literature, (2) a focus group analysis with (ex-)patients, (3) qualitative analyses to formulate themes, and (4) a quantitative selection of items by patients and experts through prioritization. RESULTS: Eight existing PREMs were evaluated. After removing duplicates, 141 items were identified. Through qualitative analyses of the focus group in which the patient journey was discussed, eight themes were formulated: "Organization of healthcare," "Competence of healthcare professionals," "Communication," "Information & services," "Patient empowerment," "Continuity & informal care," "Environment," and "Technology." Seven patients and eleven professionals were asked to prioritize what they considered the most important items. From this, an item bank with 76 items was proposed. CONCLUSION: In collaboration with patients and healthcare professionals, we have proposed a PREM-item bank to evaluate the experiences of patients' receiving cancer care in an outpatient clinic. This item bank is the first step to dynamically assess the quality of cancer care provided in an outpatient setting.

Development, validation and feasibility of a Patient Satisfaction Questionnaire for evaluating the quality performance of a diagnostic small fibre neuropathy service: A qualitative study.

INTRODUCTION AND AIM: Small fibre neuropathy (SFN) is a peripheral neuropathy, leading to neuropathic pain and autonomic dysfunction. An evidence-based standardized patient diagnostic SFN service has been implemented in the Netherlands for improving patient-centred SFN care. However, the quality of care of this diagnostic SFN service has never been assessed from a patient perspective. The aim of this study was to develop and validate an SFN-Patient Satisfaction Questionnaire (SFN-PSQ) to measure the quality performance of a standardized diagnostic SFN service. METHODS: A descriptive qualitative study to create the SFN-PSQ was performed using the (COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist. For item generation and content development, domains and/or items from validated PSQs were selected. The content development and content validity were performed using a Delphi method with SFN expert caregivers with different backgrounds. By using the three-step-test method in individual cognitive interviews, the content validity by patients was finalized. RESULTS: In one online Delphi panel round, the content of the first concept of the SFN-PSQ was validated, which resulted in the second concept of the SFN-PSQ. From July 2019 till March 2020, nine patients consented to participate in the individual cognitive interviews. The most significant changes of the new questionnaire were adding domains and items concerning the waiting list, the diagnostic services and consultation by the hospital psychiatrist. Also, a differentiation was made for both an inpatient and outpatient diagnostic SFN service. Furthermore, the clarity and intelligibility of the domains/items were improved, resulting in an increased comprehension of the SFN-PSQ. Ultimately, the new developed SFN-PSQ consisted of 10 domains and 51 items, suitable for measuring patient satisfaction of the neurological analysis in patients with SFN. CONCLUSION: Through item generation, expert opinions and interviews with patients, the SFN-PSQ was developed and validated, and feasibility was confirmed. The structure of the questionnaire, based on the logistic and diagnostic SFN pathway, could be used as a model in other hospitals to improve the quality, continuity and access of SFN care and other chronic diseases taking into account potential cross-cultural differences. PATIENT OR PUBLIC CONTRIBUTION: Caregivers were involved in the item generation and content development of the questionnaire. Patients were directly involved in testing the content validity and feasibility of the SFN-PSQ. CLINICAL TRIAL REGISTRATION: Not applicable.

Content validity of patient-reported measures evaluating experiences of the quality of transitions in healthcare settings-a scoping review.

No reviews so far have been conducted to define the constructs of patient-experienced quality in healthcare transitions or to identify existing generic measures of patients' experience of the quality within healthcare transitions. Our aim was to identify domains relevant for people experiencing healthcare transitions when evaluating the quality of care they have received, map the comprehensiveness of existing patient-reported experience measures (PREM), and evaluate the PREMs' content validity. The method was guided by the Joanna Briggs Institutes' guidance for scoping reviews. The search was performed on 07 December 2021 and updated 27 May 2024, in the electronic databases Medline (Ovid), Embase (Ovid), and Cinahl (EBSCO). The search identified 20,422 publications, and 190 studies were included for review. We identified 30 PREMs assessing at least one aspect of adults' experience of transitions in healthcare. Summarising the content, we consider a model with two domains, organisational and human-relational, likely to be adequate. However, a more comprehensive analysis and adequate definition of the construct is needed. None of the PREMs were considered content valid.

Quality of care transition, patient safety incidents, and patients' health status: a structural equation model on the complexity of the discharge process.

BACKGROUND: The transition of patients between care contexts poses patient safety risks. Discharges to home from inpatient care can be associated with adverse patient outcomes. Quality in discharge processes is essential in ensuring safe transitions for patients. Current evidence relies on bivariate analyses and neglects contextual factors such as treatment and patient characteristics and the interactions of potential outcomes. This study aimed to investigate the associations between the quality and safety of the discharge process, patient safety incidents, and health-related outcomes after discharge, considering the treatments' and patients' contextual factors in one comprehensive model. METHODS: Patients at least 18 years old and discharged home after at least three days of inpatient treatment received a self-report questionnaire. A total of N = 825 patients participated. The assessment contained items to assess the quality and safety of the discharge process from the patient's perspective with the care transitions measure (CTM), a self-report on the incidence of unplanned readmissions and medication complications, health status, and sociodemographic and treatment-related characteristics. Statistical analyses included structural equation modeling (SEM) and additional analyses using logistic regressions. RESULTS: Higher quality of care transition was related to a lower incidence of medication complications (B = -0.35, p < 0.01) and better health status (B = 0.74, p < 0.001), but not with lower incidence of readmissions (B = -0.01, p = 0.39). These effects were controlled for the influences of various sociodemographic and treatment-related characteristics in SEM. Additional analyses showed that these associations were only constant when all subscales of the CTM were included. CONCLUSIONS: Quality and safety in the discharge process are critical to safe patient transitions to home care. This study contributes to a better understanding of the complex discharge process by applying a model in which various contextual factors and interactions were considered. The findings revealed that high quality discharge processes are associated with a lower likelihood of patient safety incidents and better health status at home even, when sociodemographic and treatment-related characteristics are taken into account. This study supports the call for developing individualized, patient-centered discharge processes to strengthen patient safety in care transitions.

Patient-reported experience measures in deprescribing for hospitalised older patients: a prospective, multicentre, observational study.

BACKGROUND: Hospitalisation provides an opportunity for medication review and deprescribing. Patient-reported experience measures (PREM) for deprescribing in older patients in hospital are not well described. AIMS: To pilot test and describe PREM for deprescribing in older patients, compare PREM by patient characteristics and investigate patients' awareness of medication changes on hospital discharge. METHODS: This prospective, multicentre, observational cohort study at two tertiary hospitals in Sydney, Australia, evaluated the PREM questionnaire developed by the NSW Therapeutic Advisory Group. It was completed by patients (or their next of kin) recruited from acute geriatric medicine and orthogeriatric services. Association with nine patient characteristics was analysed using the Chi-squared test and multivariable regression. Awareness of medication changes and test-retest reliability were analysed using descriptive statistics. RESULTS: Overall, 201 participants completed the questionnaire, with 170 eligible for analysis; 34 (20%) of 170 were aware of reduction or cessation of their usual medications on discharge and reported involvement in decision-making and receiving enough information to reduce or stop one or more of their usual medications (positive PREM). Independent predictors of positive PREM included respondent (next of kin), hospital (Hospital 1), language (English) and specialty (acute geriatric medicine). Overall, 92 (59.4%) of 155 patients with medication changes were aware of those changes on hospital discharge. CONCLUSIONS: These PREM are a feasible tool to examine older patients' experiences of deprescribing in hospital and might be applied to evaluate interventions to improve awareness, shared decision-making and provision of information when deprescribing for older patients.

Danish translation and cultural adaptation of the 'What do you think of hospital' patient reported experience measure for children and adolescents in outpatient settings.

PURPOSE: The aim of this study was to translate the patient reported experience measure (PREM) questionnaire"What do you think of the hospital? Help us to get better!" into Danish used in outpatient clinics and to explore its face and content validity. DESIGN AND METHODS: The translation process followed WHO recommendations and included forward translation, expert panel evaluation, back translation, pre-testing and cognitive interviews with 23 children and adolescents. RESULTS: Children and adolescents were positive to using PREM as a way to express their experiences. The layout of the questionnaire was important as use of colours was more appealing and the topics of the questionnaire were better visualised. The concepts in the original questionnaire related to distinguishing between different rooms for examination and conversation are not used in a Danish context. Otherwise, only minor translation adjustments were needed to match the Danish target group. CONCLUSION: Children and adolescents found that the Danish version of the PREM questionnaire tool was easy to read and understand, and the layout emphasised that they are the target group. After pre-testing among 23 children and adolescents, the questionnaire is now ready for pilottest in a larger group. PRACTICE IMPLICATIONS: The present study provides a tool to generate knowledge and evaluate the experiences of children and adolescents in an outpatient clinic. Using the questionnaire, healthcare staff may monitor the quality of the experiences of children and adolescents and collect data for research purposes. Likewise, it will be possible to compare hospitals and organizations nationally.

Development and content validity of the Experienced Patient-Centeredness Questionnaire (EPAT)-A best practice example for generating patient-reported measures from qualitative data.

INTRODUCTION: To effectively foster patient-centeredness (PC), it is crucial to measure its implementation. So far, there is no German measure to assess PC comprehensively. The aim of this study is to develop and select items for the Experienced Patient-Centeredness (EPAT) Questionnaire, a patient-reported experience measure (PREM). The EPAT intends to assess PC from the perspective of adult patients treated for different chronic diseases in inpatient and outpatient settings in Germany. Furthermore, we aim at providing a best-practice example for developing PREMs from qualitative data. METHODS: The development process comprised a three-phase mixed-method design: (1) preparation, (2) item generation and (3) item selection and testing of content validity. We generated items using qualitative content analysis based on information from focus groups, key informant interviews and literature search. We selected items using relevance rating and cognitive interviews. Participants were patients from four chronic disease groups (cancer, cardiovascular disease, mental disorder, musculoskeletal disorder) and healthcare experts (e.g., clinicians, researchers, patient representatives). RESULTS: We conducted six focus groups with a total of 40 patients, key informant interviews with 10 experts and identified 48 PREMs from international literature. After team discussion, we reached a preliminary pool of 152 items. We conducted a relevance rating with 32 experts and 34 cognitive interviews with 21 patients. We selected 125 items assessing 16 dimensions of PC and showed high relevance and comprehensibility. CONCLUSIONS: The EPAT questionnaire is currently undergoing psychometric testing. The transparent step-by-step report provides a best practice example that other researchers may consider for developing PREMs. Integrating literature and experts with a strong focus on patient feedback ensured good content validity. The EPAT questionnaire will be helpful in assessing PC in routine clinical practice in inpatient and outpatient settings for research and quality improvement. PATIENT OR PUBLIC CONTRIBUTION: Patients were not involved as active members of the research team. While developing the funding proposal, we informally reached out to several patient organizations who all gave us positive feedback on the study aims, thereby confirming their relevance. Those patient organizations endorsed the funding proposal with formal letters of support and supported recruitment by disseminating advertisements for study participation.

Patient-reported symptoms and experience following Guillain-Barré syndrome and related conditions: Questionnaire development and validation.

BACKGROUND: Guillain-Barré syndrome (GBS) is a rare inflammatory peripheral nerve disorder with variable recovery. Evidence is lacking on experiences of people with GBS and measurement of these experiences. OBJECTIVE: We aimed to develop and validate an instrument to measure experiences of people with GBS. DESIGN: We used a cross-sectional design and online self-administered questionnaire survey. Question domains, based on a previous systematic review and qualitative study, covered experiences of GBS, symptom severity at each stage, healthcare and factors supporting or hindering recovery. Descriptive, exploratory factor and reliability analyses and multivariable regression analysis were used to investigate the relationships between variables of interest, explore questionnaire reliability and validity and identify factors predicting recovery. SETTING AND PARTICIPANTS: People with a previous diagnosis of GBS were recruited through a social media advert. RESULTS: A total of 291 responders, of different sexes, and marital statuses, were included, with most diagnosed between 2015 and 2019. Factor analysis showed four scales: symptoms, information provided, factors affecting recovery and care received. Positive social interactions, physical activity including physiotherapy and movement, changes made at home and immunoglobulin treatment were important for recovery. Multivariable models showed that immunoglobulin and/or plasma exchange were significant predictors of recovery. Employment and recovery factors (positive interactions, work support and changes at work or home, physical activity and therapy), though associated with recovery, did not reach statistical significance. CONCLUSION: The questionnaire demonstrated good internal reliability of scales and subscales and construct validity for people following GBS. PATIENT CONTRIBUTION: Patients were involved in developing and piloting the questionnaire.

How paediatric departments in Sweden facilitate giving children a voice on their experiences of healthcare: A cross-sectional study.

BACKGROUND: In January 2020, the United Nations Convention on the Rights of the Child was incorporated into Swedish law. According to Swedish regulations, patients are to be given the opportunity to participate in quality improvement. Sometimes, the patients are children who have the right to be heard on matters concerning them, such as their experience of a hospital visit. OBJECTIVE: This study aimed to describe how Swedish paediatric departments facilitate children's voices on their healthcare experiences and how their perspectives are taken into account in quality improvement work. METHODS: This study has a descriptive cross-sectional design. Data were collected using a study-specific survey sent by e-mail to all the heads of the paediatric departments in Sweden, with both inpatient and outpatient care. The response rate was 74% (28 of 38 departments). RESULTS: The results demonstrated a variation in questionnaires used and to whom they were targeted; less than half of the participating departments reported having had questionnaires aimed at children. The results also indicated a major variation in other working methods used to allow children to voice their experiences in Swedish paediatric departments. The results indicate that the national co-ordination in facilitating the children's rights to be heard on their experiences in healthcare organisations can be improved. CONCLUSION: Further research is required to ascertain which method is the most practically effective in paediatric departments, in what way children prefer to be heard regarding their experience of and perspectives on healthcare, and what questions need to be asked. A validated national patient-reported experience measure developed with and aimed at children could provide them with equal opportunities to voice their experiences in healthcare, regardless of their diagnoses or which paediatric department they visit.

Assessing the experience of person-centred coordinated care of people with chronic conditions in the Netherlands: Validation of the Dutch P3CEQ.

BACKGROUND: Countries are adapting their health and social care systems to better meet the needs of growing populations with (multiple) chronic conditions. To guide this process, assessment of the 'patient experience' is becoming increasingly important. For this purpose, the Person-Centred Coordinated Care Experience Questionnaire (P3CEQ) was developed in the United Kingdom, and translated into several languages. AIM: This study aimed to assess the internal and construct validity of the Dutch P3CEQ to capture the experience of person-centred coordinated care of people with chronic conditions in the Netherlands. PARTICIPANTS AND METHODS: Adults with chronic conditions (N = 1098) completed the Dutch P3CEQ, measures of health literacy and patient activation, and reported the use and perceived quality of care services. Data analysis included Principal Component and reliability analysis (internal validity), analysis of variance and Student's T-tests (construct validity). RESULTS: The two-component structure found was pretty much the same as in the UK validation study. Sociodemographic correlates also resembled those found in the United Kingdom. Women, persons who were less educated, less health-literate or less activated experienced less person-centred coordinated care. P3CEQ scores correlated positively with general practitioner performance scores and quality ratings of the total care received. CONCLUSION: The Dutch P3CEQ is a valid instrument to assess the experience of person-centred coordinated care among people with chronic conditions in the Netherlands. Awareness of inequity and more attention to communication skills in professional training are needed to ensure that care professionals better recognize the needs of women, lower educated or less health-literate persons, and improve their experiences of care. PATIENT CONTRIBUTION: The P3CEQ has been developed in collaboration with a range of stakeholders. Eighteen persons with (multiple) chronic conditions participated as patient representatives and codesign experts in (four) codesign workshops. Other patient representatives participated in cognitive testing of the English-language instrument. The usability of the P3CEQ to capture the experience of person-centred coordinated care of older persons has been examined by interviewing 228 older European service users, including 13 living in the Netherlands, as part of the SUSTAIN project. More than a thousand persons with chronic conditions participated in the validation study of the Dutch P3CEQ.

CONTACT-Patient-Centred Care Questionnaire to assess care for patients treated with oral anticancer drugs: Development and psychometric validation.

OBJECTIVE: Instruments to measure quality of patient-centred care (PCC) for the rapidly growing population of patients treated with oral anticancer drugs (OACD) are lacking. The aim of this study was to develop a valid and reliable instrument to assess PCC in the context of OACD. METHODS: The CONTACT-Patient-Centred Care Questionnaire (CONTACT-PCCQ) was developed based on a validated set of key elements (KEs) for patient-centred education and counselling in patients taking OACD, and face validity was evaluated by means of cognitive interviews. In 16 Belgian hospitals, adult patients treated with OACD were asked to complete the questionnaire. Construct validity was investigated through exploratory factor analyses (EFAs) and internal consistency of the subscales was examined using Cronbach's alpha. RESULTS: The initial 86-item instrument was completed by 464 patients. Each EFA confirmed the a priori PCC-based structure of the subscales. However, EFA revealed more than one factor for two of the subscales. Therefore, multiple subsections within these subscales were created. Based on factor loadings and item content, six items were removed. This resulted in a final 80-item instrument with seven subscales and five subsections. Cronbach's alpha for the subscales and subsections ranged between 0.732 and 0.918, which implies adequate internal consistency. CONCLUSION: A final instrument with 80 items divided into seven subscales, covering all six dimensions of PCC, was obtained. The CONTACT-PCCQ has acceptable psychometric properties, supporting its use as a measure to assess care experiences of patients treated with OACD.

Psychometric properties of the person-centred coordinated care experience questionnaire (P3CEQ) in a Norwegian radiotherapy setting.

BACKGROUND: The number of older adults with cancer is increasing. Radiotherapy is an important treatment modality for cancer and may cause side effects and distress. Patient-reported experience measures aim to measure patients' experiences with health care. This can help healthcare services to improve in line with patients' needs. To assess how Norwegian patients receiving radiotherapy experience their care, a valid and reliable tool is required. We selected the person-centred coordinated care experience questionnaire as a tool. OBJECTIVE: The aim of the study is to validate the Norwegian version of the person-centred coordinated care experience questionnaire in a radiotherapy setting. METHODS: A feasibility study of the person-centred coordinated care experience questionnaire and a cross-sectional study-testing psychometric properties of the questionnaire in a Norwegian radiotherapy setting-were conducted. Participants were recruited from two different hospitals in Norway. Patient characteristics and item scores are described using descriptive statistics. We performed an exploratory factor analysis and applied principal component analysis with a varimax rotation. Cronbach's α was used to assess internal consistency. RESULTS: In total, 24 patients participated in the feasibility test, and 176 were included in the cross-sectional study where we explored the psychometric properties of the person-centred coordinated care experience questionnaire. Three factors were identified. Internal consistency was established for the 10-item scale, with Cronbach's α = 0.698. CONCLUSIONS: Conclusions must consider the Norwegian setting and healthcare context. We found that the Norwegian version of the person-centred coordinated care experience questionnaire is a relevant, valid and reliable tool to provide insight into different areas of patients' experiences upon receiving radiotherapy. However, further testing on a larger sample is necessitated.

A comparison of patient appraisal of professional skills for GPs in training participating in differing education programs.

BACKGROUND: Medical boards and healthcare providers internationally are coming under increasing pressure to attract international medical graduates (IMGs) and overseas trained doctors (OTDs) to cope with predicted general practice (GP) doctor shortages. Various pathways to registration are made available for this purpose. There is very little understanding of the effects of different training pathways to licensing and registration on the ability of IMGs and OTDs, as well as locally trained doctors, to acquire the desirable professional skills deemed necessary for working effectively in the primary care sector. METHODS: Feedback from patients was collected at the end of their scheduled consultation with their doctor using a questionnaire consisting of 13 Likert scale items that asked them to rate their experience of the consultation. Feedback was obtained for doctors going through the Royal Australian College of General Practice (RACGP) Practice Experience Program (PEP) and the Australian General Practice Training Program (AGPT), with the former intended primarily for IMGs and OTDs, and the latter for local medical graduates including from New Zealand. Patient feedback was also obtained for patients visiting already Fellowed and experienced GPs for comparative purposes, resulting in data for three groups of doctors (two trainee, one already Fellowed). Rater consistency and agreement measures, analysis of variance, principal component analysis, t-tests and psychometric network analysis were undertaken between and within groups to identify similarities and differences in patient experience and professionalism of doctors. RESULTS: There was a small but significant difference in average patient raw scores given to PEP and AGPT doctors (90.25, 90.97%), with the highest scores for 'Respect shown' (92.24, 93.15%) and the lowest for 'Reassurance' 89.38, 89.84%). Male patients gave lower scores (89.56%) than female patients (91.23%) for both groups of doctors. In comparison, patients gave experienced GPs an average 91.38% score, with male patients giving a lower average score than female patients (90.62, 91.93%). Two components were found in the patient data (interpersonal communication, caring/empathy) that account for over 80% of the variance. When patient scores were aggregated by doctor, the average PEP and AGPT doctor scores received were 90.27 and 90.99%, in comparison to the average experienced GP score of 91.43%. Network analysis revealed differences in the connectedness of items between these two groups as well as in comparison with experienced GPs, suggesting that PEP doctors' skills are less cohesively developed in the areas of listening ability, explaining and providing reassurance. CONCLUSIONS: The small but statistically significant differences between doctor groups reported in this preliminary study are supplemented by percentile analysis, network analysis and principal component analysis to identify areas for further exploration and study. There is scope for improving the integration of interpersonal communication skills of GPs in Training with their caring and empathy skills, when compared with experienced GPs as a benchmark. Suggestions are made for enhancing professional skills from a patients' perspective in future training programs.

Patient-Reported Outcome and Experience Measures Administered by Dietitians in the Outpatient Setting: Systematic Review.

Understanding how patients perceive their health and the experience with the dietitian is fundamental to providing patient-centred care. The types of patient reported measures (PRMs) used by outpatient dietitians is unclear. Guidance about use of PRMs for dietitians is also lacking. The aim of this systematic review was to synthesise evidence regarding the use of PRMs by dietitians in the outpatient setting and evaluate the methodological quality of studies evaluating the psychometric properties of PRMs. Eight databases were searched systematically for studies of dietitians working in the outpatient setting and administering a PRM. Forty-four studies were evaluated and described 58 different PRMs. These included direct nutrition related (n = 12 studies), clinical (n = 21 studies), and health-related quality of life PRMs (n = 24 studies); 1 study documented use of a patient-reported experience measure. A large range of PRMs are used by outpatient dietitians. Of the most common PRMs, the majority are administered in similar populations to the original validation study. Dietitians should use a combination of 3 PRMs: a generic health-related quality of life tool, an experience measure, and at least 1 clinical or direct nutrition-related measure. This will enable dietitians to fully capture the impact of their care on patients.

Validation of the patient-reported experience measure for care in Chinese hospitals (PREM-CCH).

BACKGROUND: A psychometrically validated instrument to measure patient experience in Chinese public hospitals would be useful and is currently lacking. Our research team developed the Patient-Reported Experience Measure for Care in Chinese Hospitals (PREM-CCH). We aimed to validate this PREM-CCH in the present study. METHODS: Data were drawn from a cross-sectional patient survey in 2016. Complete responses from 2293 outpatients and 1510 inpatients were included. Separate psychometric evaluation was carried out on outpatient and inpatient PREM-CCHs in terms of exploratory factor analysis, internal consistency, construct validity and criterion validity. RESULTS: The validated outpatient PREM-CCH contained 22 items and five Factors, i.e. Communication and information, Professional competence, Medical costs, Efficiency, and Hospital recommendation. The validated inpatient PREM-CCH contained 19 items and six Factors, i.e. Communication and information, Professional competence, Medical costs, Efficiency, Health outcomes, and Hospital recommendation. The PREM-CCH showed satisfactory internal consistency, construct validity and criterion validity. CONCLUSIONS: The PREM-CCH is one of the first validated instruments capturing patient experience of care in the context of Chinese public hospitals. It performed well in the psychometric evaluation. It consists of a basic set of items important to patients that could be applicable to public hospitals in China and actionable to inform quality improvement initiatives.

Patient and family views of team functioning in primary healthcare teams with nurse practitioners: a survey of patient-reported experience and outcomes.

BACKGROUND: Nurse practitioners (NPs) have been added to primary healthcare teams to improve access to care. Team processes, including communication and decision-making, explicate how patients and families view team functioning. Yet, important gaps exist in our understanding of patient-reported experience and outcomes at the level of the healthcare team. We aimed to examine the influence of individual, team, and organizational characteristics, and role clarity on outcomes of care mediated by team processes in primary healthcare teams that include NPs. METHODS: A cross-sectional survey across six sites representing practices with NPs in Québec, Canada, was conducted between March 2018 and April 2019 as part of a multiple-case study. Patients and families (n = 485; response rate: 53%) completed a validated questionnaire, which included a patient-reported experience measure (PREM) and a patient-reported outcome measure (PROM) of team functioning (Cronbach alpha: 0.771 (PROM) to 0.877 (PREM)). We performed logistic regression and mediation analyses to examine relationships between the individual, team, and organizational characteristics, role clarity, and outcomes of care mediated by team processes. RESULTS: Patients and families expressed positive perceptions of team functioning (mean 4.97/6 [SD 0.68]) and outcomes of care (5.08/6 [0.74]). Also, high team processes (adjusted odds ratio [AOR] 14.92 [95% CI 8.11 to 27.44]) was a significant predictor of high outcomes of care. Role clarity (indirect effect coefficient ab = 6.48 [95% CI 3.79 to 9.56]), living in an urban area (-1.32 [-2.59 to -0.13]), patient as respondent (-1.43 [-2.80 to -0.14]), and income (1.73 [0.14 to 3.45]) were significant predictors of outcomes of care mediated by team processes. CONCLUSIONS: This study provides key insights on how primary healthcare teams with NPs contribute to team functioning, using a validated instrument consistent with a conceptual framework. Results highlight that high role clarity, living in a non urban area, family as respondent, and adequate income were significant predictors of high outcomes of care mediated by high team processes. Additional research is needed to compare teams with and without NPs in different settings, to further explicate the relationships identified in our study.

Swedish Inflammatory Bowel Disease Register (SWIBREG) - a nationwide quality register.

Background: Inflammatory bowel disease (IBD) is a chronic, inflammatory relapsing disease with increasing incidence. IBD research and long-term follow-up of patients have, however, been hampered by lack of detailed data on disease phenotype, patient-reported outcome measures, Physician Global Assessment, disease activity, and hospital-administered drugs. Aim: To review the Swedish IBD quality register (SWIBREG). Methods: Review of SWIBREG including questionnaire data from users and patients. Results: SWIBREG was launched in 2005, and as of April 2019, contains 46,400 patients with IBD (Crohn's disease: n = 15,705, ulcerative colitis: n = 21,540, IBD unclassified and other colitis (including e.g., microscopic colitis): n = 9155). Of these IBD patients, 7778 had been diagnosed in childhood (16.8%). Earlier research has shown that combining SWIBREG and the Swedish National Patient Register (NPR) yields a positive predictive value of 100% (95%CI = 95-100%) for having a diagnosis of IBD. Moreover, out of all patients in the NPR with a diagnosis of IBD plus either IBD-related surgery or immunomodulatory/biological treatment during the past 18 months, SWIBREG covers 59.0%. SWIBREG records not only information on conventional therapies but also on biological treatment, surgery, smoking, disease activity, patient-reported outcome measures (PROMs), and patient-experienced measures (PREMs). Data are presented through a graphical decision support system. Conclusion: SWIBREG benefits patients with IBD, and offers an ideal opportunity for healthcare personnel and researchers to examine disease phenotype and activity, PROMs/PREMs, and hospital-administered drugs in patients with IBD.

Measuring patient and family perceptions of team processes and outcomes in healthcare teams: questionnaire development and psychometric evaluation.

BACKGROUND: There is a lack of validated instruments examining dimensions of team functioning from the perspective of patients and families consistent with a conceptual framework. The study aimed to develop and assess the psychometric properties of the Patient-Perceptions of Team Effectiveness (PTE) questionnaire. METHODS: A cross-sectional survey was undertaken in three studies. Data were collected from May-October 2016 for Study 1, April 2018-ongoing for Study 2, and October 2016 to June 2017 for Study 3. Online and paper versions of the self-administered questionnaire were available in English and in French. The initial questionnaire included 41 items. Study 1 included 320 respondents. Reliability was assessed using Cronbach alpha. Face validity (n = 250) was assessed using a structured questionnaire. Content validity was examined using subject matter experts and Spearman's item-total correlations. Construct validity was examined using known group comparisons (i.e., clinical specialty, education, length of follow-up, reason of consultation). Content analysis was used for open-ended questions. RESULTS: The questionnaire took 10 to 15 min to complete. Positive assessments were noted for instructions, formatting, font size and logical ordering of questions. In Study 1, reliability indices for the PTE-Overall, Team Processes and Outcomes subscales ranged from 0.72 to 0.84. Item-total correlations ranged from 0.551 to 0.794 (p <  0.001). Differences were noted between clinical specialties, education, length of follow-up, reason of consultation, low and high functioning teams. No differences were noted between English and French language respondents. Psychometric properties were re-assessed in Study 2 and 3 after unclear questions were reworked. Reliability indices for the subscales ranged from 0.76 to 0.94 and differences remained significant between low and high functioning teams. CONCLUSION: The final 43-item instrument is easy to administer to patients and families. The studies provide evidence of validity to support the propositions in the conceptual framework. The patient-level measures can be aggregated to the team, organizational or system level. The information can be used to assess healthcare team functioning in acute and primary care and determine the role patients and families are playing in teams. Further testing is needed with patients and families who are hospitalized or receiving care from teams in rural areas.

Development of a national audit tool for juvenile idiopathic arthritis: a BSPAR project funded by the Health Care Quality Improvement Partnership.

Objective: Timely access to holistic multidisciplinary care is the core principle underpinning management of juvenile idiopathic arthritis (JIA). Data collected in national clinical audit programmes fundamentally aim to improve health outcomes of disease, ensuring clinical care is equitable, safe and patient-centred. The aim of this study was to develop a tool for national audit of JIA in the UK. Methods: A staged and consultative methodology was used across a broad group of relevant stakeholders to develop a national audit tool, with reference to pre-existing standards of care for JIA. The tool comprises key service delivery quality measures assessed against two aspects of impact, namely disease-related outcome measures and patient/carer reported outcome and experience measures. Results: Eleven service-related quality measures were identified, including those that map to current standards for commissioning of JIA clinical services in the UK. The three-variable Juvenile Arthritis Disease Activity Score and presence/absence of sacro-iliitis in patients with enthesitis-related arthritis were identified as the primary disease-related outcome measures, with presence/absence of uveitis a secondary outcome. Novel patient/carer reported outcomes and patient/carer reported experience measures were developed and face validity confirmed by relevant patient/carer groups. Conclusion: A tool for national audit of JIA has been developed with the aim of benchmarking current clinical practice and setting future standards and targets for improvement. Staged implementation of this national audit tool should facilitate investigation of variability in levels of care and drive quality improvement. This will require engagement from patients and carers, clinical teams and commissioners of JIA services.