Patient-reported Experience Measures Research Articles

#3012 Great impact of the results of PREMs and PROMs in all stages of chronic kidney disease. Analysis of 281 patients

Abstract Background and Aims In recent years, there has been a growing interest in the use and relevance of Patient-Reported Outcomes Measures (PROMs) and Patient-Reported Experience Measures (PREMs). The main objective of the study is to analyze scores in quality of life, anxiety, depression, and functional capacity using tests that assess PREMs and PROMs in patients at different stages of chronic kidney disease (CKD). Method Multicenter, cross-sectional, observational, non-interventional study with 281 patients (84 on hemodialysis, 48 on peritoneal dialysis, 50 with kidney transplant, 50 with advanced CKD, and 49 patients with CKD stages 1-2). Two professionals conducted interviews for data collection from all patients. Collected data: For PROMs: PFS (Piper Fatigue Scale), HADS (Hospital Anxiety and Depression Scale), FACIT-F (Functional Assessment of Chronic Illness Therapy-Fatigue Scale), SF-36, VAS (Visual Analogue Scale). For PREMs - PACIC test (Patients' Assessment of Chronic Illness Care), in addition to other comorbidity indices and laboratory analyses. ANOVA statistical analysis was used for group comparison. Results Although patients showed significant differences in age and comorbidities, our analysis shows that the most PROMs do not discriminate between different stages of CKD. The PROMs that most discriminate between different stages of CKD are those related to the Piper Fatigue Scale test. PREMs, analyzed using the PACIC scale, do achieve said discrimination (Table 1). Conclusion The analysis of PROMs and PREMs show the significant impact that CKD has on health-related quality of life. Some PROMs can discriminate between different stages of CKD, but the most effective ones are PREMs, which are an indirect indicator of the quality of care received, contributing to patient involvement in decision-making and empowerment.

#1204 Measuring needling experience: development and validation of the Needling Patient Reported Experience Measure (NPREM)

Abstract Background and Aims Most people on haemodialysis rely on having reliable access to their vascular system, often via surgically created arteriovenous fistula or graft. At the beginning of each dialysis session, needles must be inserted. While ‘needling’ is a key step, an annual UK survey shows that needling is one of the lowest scoring areas of reported experience for individuals receiving haemodialysis in a kidney centre or satellite unit. Qualitative research indicates that needling can be painful and cause anxiety. Although an emerging area of research, no validated measures exist which assess patient reported experience of needling. We aimed to develop a questionnaire which reliably measures needling experience. The Needling Patient Reported Experience Measure (NPREM) was developed over multiple phases consisting of qualitative interviews with patients, item generation involving a multidisciplinary expert group including experts by experience, cognitive interviewing and pilot testing. Here we report the results of the final validation phase. Methods Seven NHS kidney centres participated in the validation phase (aiming for 500 participants). Between February-April 2023, participants completed either online or paper versions of the questionnaire. A subset of participants (aiming for 80-120) completed a follow-up questionnaire pack (NPREM, Change of Circumstances) 2-4 weeks after the first to assess the reliability of the scale over time. Analyses included a full evaluation of the scale psychometric properties and factor analyses to assess dimensional structure. Correlations with other validated measures (Vascular Access Quality of Life [VASQoL], EuroQol 5 Dimension [EQ5D-5L], and Patient Activation Measure [PAM]) were used to assess the convergent and divergent validity of the NPREM. Results 468 people participated (sample characteristics: male 66%, mean age 66 years (SD 14), White 75%, access via fistula 95%, first access 76%), of which 99 completed the follow-up. Overall, the NPREM showed good internal consistency (Cronbach's alpha = 0.94) and moderate to strong inter-item correlations. Factor analyses indicated that needling experience was a unidimensional construct, with one strong, main factor. Follow-up scores were strongly correlated (r = 0.89) with participants’ initial NPREM responses, demonstrating high reliability. Evidence of convergent validity was seen in the strong correlations between the NPREM and 1) the VASQoL (r = 0.60) and 2) the Overall Needling Experience question (r = 0.79). NPREM did not correlate with the EQ-5D (r = −0.31), the EQ-5D overall health (r = 0.24) or PAM (0.17), demonstrating divergent validity. The research team reviewed all items and themes reaching a consensus on items included, resulting in the validated 28-item NPREM (v 1.0), across five themes of care (Communicating with the Team, My Fistula/Graft and Needling, Steps in Needling, Working Together, My Personal Experience) plus Overall Needling Experience. Conclusion These results indicate that the NPREM offers a robust needling-specific tool to measure patient experience in those receiving haemodialysis. It addresses a gap by offering a way for kidney care providers to assess needling experience, both as a whole and across themes of care, which may facilitate meaningful service improvements. When published, the NPREM will be publicly available and free to use.

Patient-reported outcomes in HSCT for autoimmune diseases: Considerations on behalf of the EBMT ADWP, PAC, and Nurses Group

BackgroundOver the last three decades, hematopoietic stem cell transplantation (HSCT) has been successfully used to treat severe and refractory autoimmune diseases (AIDs). A multidisciplinary appraisal of potential benefits and risks by disease and transplant specialists is essential to determine individual suitability for HSCT. ObjectivesPatient-reported outcomes (PROs) and Health-related Quality of Life (HRQoL) instruments can capture the unique patient perspective on disease burden and impact of treatment. MethodsHerein, we describe the basis and complexity of endpoints measuring patient-reported perceptions of efficacy and tolerability used in clinical practice and trials for patients with ADs undergoing autologous HSCT. ResultsPatient-reported outcome measures (PROMs) and patient-reported experience measures (PREM) are key tools to evaluate the impact and extent of disease burden for patients affected by ADs. For formal scientific assessment, it is essential that validated general instruments are used, while adaptations have resulted in disease specific instruments that may help guiding tailored interventions. An additional approach relates to qualitative evaluations, from carefully structured qualitative research to informal narratives, as patient stories. The patients’ subjectively reported responses to HSCT may be influenced by their pre-procedure expectations and investment in HSCT journey. ConclusionsThe complexity of AIDs advocates for individualized and multidisciplinary approach to impact positively the patient journey. PROs and HRQoL need to be collected using validated instruments in clinical practice and trials to enable robustness of data, ensure the impact of the intervention is comprehensively assessed, addressing the main questions and needs of the involved stakeholders.

Psychometric Assessment of an Item Bank for Adaptive Testing on Patient-Reported Experience of Care Environment for Severe Mental Illness: Validation Study.

The care environment significantly influences the experiences of patients with severe mental illness and the quality of their care. While a welcoming and stimulating environment enhances patient satisfaction and health outcomes, psychiatric facilities often prioritize staff workflow over patient needs. Addressing these challenges is crucial to improving patient experiences and outcomes in mental health care. This study is part of the Patient-Reported Experience Measure for Improving Quality of Care in Mental Health (PREMIUM) project and aims to establish an item bank (PREMIUM-CE) and to develop computerized adaptive tests (CATs) to measure the experience of the care environment of adult patients with schizophrenia, bipolar disorder, or major depressive disorder. We performed psychometric analyses including assessments of item response theory (IRT) model assumptions, IRT model fit, differential item functioning (DIF), item bank validity, and CAT simulations. In this multicenter cross-sectional study, 498 patients were recruited from outpatient and inpatient settings. The final PREMIUM-CE 13-item bank was sufficiently unidimensional (root mean square error of approximation=0.082, 95% CI 0.067-0.097; comparative fit index=0.974; Tucker-Lewis index=0.968) and showed an adequate fit to the IRT model (infit mean square statistic ranging between 0.7 and 1.0). DIF analysis revealed no item biases according to gender, health care settings, diagnosis, or mode of study participation. PREMIUM-CE scores correlated strongly with satisfaction measures (r=0.69-0.78; P<.001) and weakly with quality-of-life measures (r=0.11-0.21; P<.001). CAT simulations showed a strong correlation (r=0.98) between CAT scores and those of the full item bank, and around 79.5% (396/498) of the participants obtained a reliable score with the administration of an average of 7 items. The PREMIUM-CE item bank and its CAT version have shown excellent psychometric properties, making them reliable measures for evaluating the patient experience of the care environment among adults with severe mental illness in both outpatient and inpatient settings. These measures are a valuable addition to the existing landscape of patient experience assessment, capturing what truly matters to patients and enhancing the understanding of their care experiences. ClinicalTrials.gov NCT02491866; https://clinicaltrials.gov/study/NCT02491866.

Patient-Reported Experience in Colorectal Disease is Predicted by Cleanliness

BackgroundChildren with colorectal diseases such as anorectal malformations (ARM), Hirschsprung disease (HD), and functional constipation (FC) undergo bowel management programs (BMPs) to achieve cleanliness. While patient outcomes, such as cleanliness and quality of life, are well understood, patient experience, such as relationships, ability to participate in sports, and independence and self-confidence is less well understood. We aimed to assess the relationship between BMP and patient experience. MethodsA cross-sectional survey was administered to 295 patients ≥3 years old with ARM, HD, and FC completing BMP. The survey contains 22 questions regarding patient-reported experience measures (PREMs) and 11 regarding patient-reported outcomes measures (PROMs). Each was graded on a Likert scale, with higher scores meaning better experience. Scores were compared by demographics and clinical characteristics and logistic regression was performed controlling for clinically significant variables. A p-value of ≤0.05 was significant. ResultsThere were 205 eligible respondents (69.5%) with a median age of 8.9 years [IQR: 6.1–12.4]. ARM was most common (51.2%) and most achieved cleanliness on BMP (69.3%). There were no differences in experience scores by age, diagnosis, or bowel regimen. Patients that were clean had significantly higher PREM scores (67.7 [IQR: 64.0–83.0] vs. 64.8 [IQR: 55.0–70.1], p = 0.0002) and PROM scores (36.8 [IQR: 33.0–41.0] vs. 34.0 [31.0–38.5], p = 0.005). On regression analysis, cleanliness remained a strongly significant predictor of positive experience scores (β 7.37, SE 1.86, p < 0.0001). ConclusionsAchieving cleanliness was associated with positive patient experience of bowel management programs. This finding suggests that achieving cleanliness, regardless of regimen, may allow patients the best functional and experiential outcomes.

Patient-Reported Outcome and Experience Measures in Advanced Nursing Practice: What Are Key Considerations for Implementation and Optimized Use?

ObjectiveTo discuss the opportunities and challenges of implementing patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) within advanced practice nursing services in cancer care. MethodsThis discussion paper has been informed by an environmental scan of evidence from systematic reviews and primary studies evaluating the use and implementation of PROMs and PREMs. Literature from the contexts of cancer and chronic disease, including nursing and multidisciplinary supportive care literature, has been included. ResultsAdvanced practice nurses are well-positioned to evaluate and respond to PROMs and PREMs data; several studies have highlighted improved patient outcomes concerning quality of life, symptom distress, and functional status within nurse-led services. Nevertheless, the implementation of PROMs and PREMs in cancer care and nurse-led services is variable. Previous studies have highlighted implementation challenges, which can hinder comparability and generalizability of PROMs and PREMs instruments. Advanced practice nurses should consider these challenges, including ways to use standardized PROM instruments. Electronic PROMs, while efficient, may exclude individuals at risk of inequity. Complex, lengthy, and frequent administration of PROMs may also overburden people living with or after cancer, with people affected by cancer expressing preference for flexible use in some studies. Therefore, the involvement of people affected by cancer in planning for PROMs/PREMs implementation may overcome this challenge. Finally, organizational considerations in implementation should address financial investments, including initial costs for technology and training and consideration of the operationalization of PROMs within existing infrastructure for the seamless utilization of PROMs data. ConclusionDespite the potential of advanced practice nursing services to enhance patient-reported outcomes and experiences, variability in the implementation of PROMs and PREMs poses challenges. Use of validated measures, electronic or paper-based instruments, and the preferences of people affected by cancer for the use of PROMs and PREMs must be carefully considered in consultation with end users for successful implementation. Implications for PracticeIn planning for the implementation of PROMs and PREMs within nurse-led services, implementation risks may be mitigated through establishing clear guidelines for their use, investment in the development of the required infrastructure, user education, and rigorous implementation processes, including patient involvement in PROMs/PREMs selection.

Development and validation of a patient reported experience measure for experimental cancer medicines (PREM-ECM) and their carers (PREM-ECM-Carer)

BackgroundOur aim was to develop a validated Patient Reported Experience Measure (PREM) to capture patient and carer experience during participation in experimental cancer medicine trials (ECM): called PREM-ECM.MethodsMixed method design, consisting of four stages. Questionnaire items were produced for both patients and carers using interviews, focus groups, and cognitive interviews with patients and carers separately. For both patient and carer PREMs, a cross-sectional questionnaire study was conducted to identify final items for inclusion using hierarchical item reduction and Rasch analysis. Questionnaire validity and reliability were assessed, including administration feasibility.ResultsInitial interview participants suggested the need for three PREMs, two specific to patients: (i) a ‘prior’ questionnaire that captured experiences of trial introduction, screening, consenting, and early trial experience (< 6 weeks post consent); and (ii) ‘on-trial’ that captured experiences of ongoing consent and trial participation; and (iii) a PREM specific for carers. The draft 25-item ‘prior’ questionnaire was completed by 162 patients and 162 patients completed the draft 35-item ‘on-trial’ questionnaire. Hierarchical and Rasch analysis produced a 14-item ‘prior’ list and a 15-item list for ‘on-trial’. Both patient PREM’s demonstrated a good fit to the Rasch model following Bonferroni correction (X2p = 0.008). The carer 34-draft item questionnaire was completed by 102 participants. Hierarchical and Rasch analysis produced a 13-item list for PREM-ECM-Carer, with good fit to the Rasch model ( X2p = 0.62). The pilot testing demonstrated the feasibility of all the PREMs in capturing patient and caregiver experiences in routine clinical settings.ConclusionsThe three PREM-ECM questionnaires will be the first validated experience measures for ECM trial patients and their carers. These questionnaires may be used to assess patients’ and their carers’ experiences of ECM and enable robust comparisons across cancer trial units highlighting areas for service improvement.

Use of patient-reported experience and outcome measures within the colorectal cancer care continuum: a scoping review

Use of patient-reported experience and outcome measures within the colorectal cancer care continuum: a scoping review

Validation and Clinical Application of the Japanese Version of the Patient-Reported Experience Measures for Intermediate Care Services: A Cross-Sectional Study.

Older adult patients account for 70% of all hospitalized patients in Japan, and intermediate care based on patient-centered care (PCC) that ensures continuity and quality of care at the interface between home services and acute care services and restores patient's independence and confidence is necessary for them to continue living independently. At present, no concept of intermediate care is established in Japan, and the implementation of PCC has been delayed. Thus, in this study, a Japanese version of the intermediate care evaluation index (patient-reported experience measure (PREM)) was created on the basis of the original PREM developed in the UK, and data in wards with intermediate care functions in Japan were collected to confirm internal consistency and validity from 2020 to 2022. The Japanese version of PREM was found to have a factor structure with two potential factors. Given the clear correlation with the shared decision-making evaluation index, which is the pinnacle of PCC, the theoretical validity of the Japanese version of PREM, which is based on PCC as a theoretical basis, was confirmed.

Quality measures in pre-liver transplant care by the Practice Metrics Committee of the American Association for the Study of Liver Diseases.

The liver transplantation (LT) evaluation and waitlisting process is subject to variations in care that can impede quality. The American Association for the Study of Liver Diseases (AASLD) Practice Metrics Committee (PMC) developed quality measures and patient-reported experience measures along the continuum of pre-LT care to reduce care variation and guide patient-centered care. Following a systematic literature review, candidate pre-LT measures were grouped into 4 phases of care: referral, evaluation and waitlisting, waitlist management, and organ acceptance. A modified Delphi panel with content expertise in hepatology, transplant surgery, psychiatry, transplant infectious disease, palliative care, and social work selected the final set. Candidate patient-reported experience measures spanned domains of cognitive health, emotional health, social well-being, and understanding the LT process. Of the 71 candidate measures, 41 were selected: 9 for referral; 20 for evaluation and waitlisting; 7 for waitlist management; and 5 for organ acceptance. A total of 14 were related to structure, 17 were process measures, and 10 were outcome measures that focused on elements not typically measured in routine care. Among the patient-reported experience measures, candidates of LT rated items from understanding the LT process domain as the most important. The proposed pre-LT measures provide a framework for quality improvement and care standardization among candidates of LT. Select measures apply to various stakeholders such as referring practitioners in the community and LT centers. Clinically meaningful measures that are distinct from those used for regulatory transplant reporting may facilitate local quality improvement initiatives to improve access and quality of care.

Barriers and enablers to the implementation of patient-reported outcome and experience measures (PROMs/PREMs): protocol for an umbrella review

BackgroundPatient-reported outcome and experience measures (PROMs and PREMs, respectively) are evidence-based, standardized questionnaires that can be used to capture patients’ perspectives of their health and health care. While substantial investments have been made in the implementation of PROMs and PREMs, their use remains fragmented and limited in many settings. Analysis of multi-level barriers and enablers to the implementation of PROMs and PREMs has been hampered by the lack of use of state-of-the-art implementation science frameworks. This umbrella review aims to consolidate available evidence from existing quantitative, qualitative, and mixed-methods systematic and scoping reviews covering factors that influence the implementation of PROMs and PREMs in healthcare settings.MethodsAn umbrella review of systematic and scoping reviews will be conducted following the guidelines of the Joanna Briggs Institute (JBI). Qualitative, quantitative, and mixed methods reviews of studies focusing on the implementation of PROMs and/or PREMs in all healthcare settings will be considered for inclusion. Eight bibliographical databases will be searched. All review steps will be conducted by two reviewers independently. Included reviews will be appraised and data will be extracted in four steps: (1) assessing the methodological quality of reviews using the JBI Critical Appraisal Checklist; (2) extracting data from included reviews; (3) theory-based coding of barriers and enablers using the Consolidated Framework for Implementation Research (CFIR) 2.0; and (4) identifying the barriers and enablers best supported by reviews using the Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach. Findings will be presented in diagrammatic and tabular forms in a manner that aligns with the objective and scope of this umbrella review, along with a narrative summary.DiscussionThis umbrella review of quantitative, qualitative, and mixed-methods systematic and scoping reviews will inform policymakers, researchers, managers, and clinicians regarding which factors hamper or enable the adoption and sustained use of PROMs and PREMs in healthcare settings, and the level of confidence in the evidence supporting these factors. Findings will orient the selection and adaptation of implementation strategies tailored to the factors identified.Systematic review registrationPROSPERO CRD42023421845.

Development and content validity testing of a colonoscopy-specific patient-reported experience measure: the Patient Experience Colonoscopy Scale (PECS)

BackgroundIn endoscopic care, favourable patient experiences before, during and after a colonoscopy are essential for the patient’s willingness to repeat the procedure. To ensure that significant experiences are measured, patients should be involved in creating the measurement instruments. Thus, the aim of the present study was to develop a colonoscopy-specific PREM by (1) operationalising patient experiences before, during and after a colonoscopy procedure and (2) evaluating its content validity.MethodsThe colonoscopy-specific PREM was developed in two stages: (1) operationalisation with item generation and (2) content validity testing. A previously developed conceptual model, based on a systematic literature review that illustrates patients’ (n = 245) experiences of undergoing a colonoscopy, formed the theoretical basis. To assess the degree to which the PREM reflected patients’ experiences before, during and after a colonoscopy procedure, content validity was tested—through face validity with healthcare professionals (n = 4) and cognitive interviews with patients (n = 14) having experienced a colonoscopy. Content validity index (CVI) was calculated to investigate the relevance of the items.ResultsThe Patient Experience Colonoscopy Scale (PECS) is a colonoscopy-specific PREM consisting of five different constructs: health motivation, discomfort, information, a caring relationship and understanding. Each construct was defined and generated into a pool of items (n = 77). After face-validity assessment with healthcare professionals, a draft 52-item version of the PECS was ready for content validity testing by the patients. During cognitive interviews the patients contributed valuable insights that led to rewording and removal of items. Results from the CVI suggest that the PECS and its content are relevant (I-CVI range 0.5–1, S-CVI/Ave = 0.86). The final PECS consists of 30 items representing a colonoscopy-specific PREM.ConclusionThe PECS is a new 30-item PREM instrument designed for adult elective colonoscopy patients after they have undergone the procedure. Each item in the PECS derives from a conceptual model based on a systematic literature review. Patients and healthcare professionals were involved in developing the PECS, which measures colonoscopy-specific patient experiences before, during and after the procedure. The content validity testing positively contributed to the development of the PECS. Psychometric properties need to be evaluated further.

A Retrospective Age Analysis of the Ambulatory Oncology Patient Satisfaction Survey: Differences in Satisfaction across Dimensions of Person-Centred Care and Unmet Needs among Older Adults Receiving Cancer Treatment.

Over half of all new cancer cases in Alberta are diagnosed among people aged 65+ years, a group that encompasses vast variation. Patient-reported experience measures are routinely collected within Cancer Care Alberta; however, the specific consideration of the needs and concerns of older Albertans with cancer is lacking. In 2021, 2204 adults who had received treatment at a cancer centre in Alberta completed the Ambulatory Oncology Patient Satisfaction Survey (AOPSS). In this study, we explored the age differences in satisfaction across six dimensions of person-centred care and in the proportions of unmet needs across eight types of issues, with specific attention to older adults. Using three age groups (18-39, 40-64, 65+), only the physical comfort dimension showed significantly lower satisfaction among those aged 65+ years. Using five age groups (18-39, 40-64, 65-74, 75-84, 85+), significantly lower levels of satisfaction were found related to 'physical comfort' for those aged 65-74 and 75-84, 'coordination and continuity of care' for those aged 75-84 and 85+, and 'information, communication, and education' for those aged 85+. Therefore, grouping together all older adults aged 65+ years obscured lower levels of satisfaction with some dimensions of person-centred care among those aged 75-84 and 85+ years. Unmet needs generally increased with age for all types of issues, with significant differences across age groups for emotional, financial, social/family, and sexual health issues. The lower levels of satisfaction and higher proportions of unmet needs call for tailored interventions to promote optimal care experiences and outcomes among older adults receiving cancer care in Alberta and their families.

Introducing a value-based healthcare approach for women with premature ovarian insufficiency (POI): Recommendations for patient-centered outcomes in clinical practice

ObjectiveTo establish a set of clinician and patient-reported outcome measures (PROMs) and present the initial findings of a value-based healthcare (VBHC) program in patients with premature ovarian insufficiency (POI). MethodsEmploying a four-phase approach, we identified the most crucial domains for patients with POI and translated these into PROMs. Prior to each visit, patients completed questionnaires to evaluate: depression (BDI-II), menopausal symptoms (GCS), work ability (WAS) and infertility (FertiQoL). During the visits, cardiovascular health assessments and dual-energy X-ray absorptiometry (DEXA) scans to measure bone mineral density were performed. Data at intake is presented, and comparisons are drawn between women using and those not using hormone replacement therapy (HRT). Patient-reported experience measures (PREMs) were evaluated by a questionnaire. ResultsA total of 267 POI patients completed the PROM questionnaires, of whom 58.1 % were using HRT at intake. Over half of the patients (53.5 %), had a BDI-II score of 14 or higher, indicating mild to severe depression. The mean total GCS score was 20.9 (SD 11.3). The median work ability score was 7.5 (IQR 6.0–8.0) and the mean FertiQoL score 63.9 (SD 15.7). Additionally, 22.7 % of patients presented with hypertension, 6.2 % with hypercholesterolemia, and almost 50 % had low bone mass. Patients rated the VBHC program with a mean of 8.6 (SD 1.2). ConclusionsThese findings underscore the necessity of a multidisciplinary VBHC program incorporating standardized screening and psychological treatment. We advocate for the implementation of patient-centered outcomes for clinical practice, which have been found to be highly relevant by patients with POI.

Patient-Reported Outcome and Experience Measures (PROM/PREM) in Patients Undergoing Liver Surgery with Enhanced Recovery after Surgery (ERAS®): An Exploratory Study.

ERAS® (Enhanced Recovery after Surgery) is an evidence-based multidisciplinary approach focusing on optimizing outcomes after surgery through structured clinical pathways. This study aimed to assess patient-reported outcome and experience measures (PROM/PREM), which are not routinely assessed after liver surgery within an ERAS® protocol. Routine outcome parameters were extracted from clinical documentation. Using qualitative content analysis, PROM and PREM were retrospectively identified in 13 case records. In a prospective survey of 10 participants, PROM was assessed at three timepoints using the EQ-5D-5L questionnaire. PREM were collected at discharge. The following PROM categories occurred in the retrospective content analysis: appetite (84.6%), pain/discomfort (76.9%), mobility (69.2%), wound condition (69.2%), and weight (61.5%). The categories of continuity of care (92.0%) and information, communication, education (69.0%) emerged as PREM. Descriptive changes in health state were shown for all EQ-5D-5L dimensions and timepoints. At discharge, mobility, selfcare, usual activities, and pain/discomfort tended to be worse, whereas anxiety/depression decreased gradually from preoperatively to the 4 week follow-up. There was high satisfaction with interprofessional care services and experienced cooperation between professionals. PROM and PREM are helpful to incorporate patients' perspectives after liver surgery within an ERAS® pathway and should be collected routinely in clinical practice.

Understanding social dynamics and patient experience in out of hospital care: validation of a co-responsibility questionnaire (CoReCare)

Patient experiences are commonly assessed through patient reported experience measures (PREMs). Ambulatory care models extend traditional care into the patients’ home, meaning that a triangle of health care professionals, patients, and their families need to be considered when assessing the remote care experience. These intertwined responsibilities are described by co-responsibility. Currently, PREMs don’t reflect how elements to remote care impact this remote care experience. Therefore, this study aimed to develop a questionnaire assessing perceived patient-partner co-responsibility as a PREM in remote care. A 30-item questionnaire was assessed among 1000 individuals aged between 18 and 65 years that tried to lose weight with a partner, friend or family member supporting them. Pairwise item correlations, Exploratory Factor Analysis, and Cronbach’s alpha were used for validation. 29-items were identified to reflect co-responsibility across 6 factors: empowerment and support, relational aspects, lack of sympathy, co-participation, accepting help and awareness. Cronbach’s alpha ranged between 0.66 and 0.93, showing good internal consistency. We present a validated CoReCare Questionnaire to understand the impact of social dynamics on achieving desired health outcomes in a remote care setting. The CoReCare Questionnaire extends current PREMs when aiming to assess and improve the patient experience of a care episode outside of the hospital.

Prospective evaluation of patient-reported anxiety and experiences with adaptive radiation therapy on an MR-linac

PurposeAn integrated magnetic resonance scanner and linear accelerator (MR-linac) was implemented with daily online adaptive radiation therapy (ART). This study evaluated patient-reported experiences with their overall hospital care as well as treatment in the MR-linac environment. MethodsPatients pre-screened for MR eligibility and claustrophobia were referred to simulation on a 1.5 T MR-linac. Patient-reported experience measures were captured using two validated surveys. The 15-item MR-anxiety questionnaire (MR-AQ) was administered immediately after the first treatment to rate MR-related anxiety and relaxation. The 40-item satisfaction with cancer care questionnaire rating doctors, radiation therapists, the services and care organization and their outpatient experience was administered immediately after the last treatment using five-point Likert responses. Results were analyzed using descriptive statistics. Results205 patients were included in this analysis. Multiple sites were treated across the pelvis and abdomen with a median treatment time per fraction of 46 and 66 min respectively. Patients rated MR-related anxiety as “not at all” (87%), “somewhat” (11%), “moderately” (1%) and “very much so” (1%). Positive satisfaction responses ranged from 78 to 100% (median 93%) across all items. All radiation therapist-specific items were rated positively as 96–100%. The five lowest rated items (range 78–85%) were related to general provision of information, coordination, and communication. Overall hospital care was rated positively at 99%. ConclusionIn this large, single-institution prospective cohort, all patients had low MR-related anxiety and completed treatment as planned despite lengthy ART treatments with the MR-linac. Patients overall were highly satisfied with their cancer care involving ART using an MR-linac.

Psychometric Validation of the Patient-Reported Experience Measure (PREM) Questionnaire “HowRwe” in Patients With Respiratory Disease Receiving Home Respiratory Therapies

IntroductionThe patient experience is defined as all the interactions that occur between patients and the healthcare system. The experience of patients with respiratory disease with home respiratory treatments (HRT) is not captured in currently available Patient-Reported Outcome Measures (PROM). We present the psychometric validation of the Patient-Reported Experience Measure (PREM) ‘HowRwe’ in Spanish and for respiratory patients with HRT. Material and methodsAfter translation following ISPOR guidelines (International Society for Pharmacoeconomics and Outcomes Research), the questionnaire was administered to adult respiratory patients who were receiving treatment at Hospital Universitario de La Princesa. The administration was done in two stages with 6 months of difference between the pre- and post-test. ResultsWe studied 228 respiratory patients, with a mean (SD) age of 64.1 (13.2) years, 52.2% were men, 68.0% were married or coupled, and 56.6% were retired. Reliability coefficients of the scale were adequate, with α=.921 and Ω=.929 for pre-test, and α=.940 and Ω=.958 for post. The confirmatory factor analysis tested for pre- and post-intervention, showed an excellent overall fit: χ2(2)=49.380 (p<.001), CFI=.941 and SRMR=.072; and χ2(2)=37.579 (p<.001), CFI=.982 and SRMR=.046, respectively. No statistically significant associations were observed for neither age, adherence nor quality of life, except between HowRwe post-test and quality of life pre-test (r=.14 [.01,.26]; p=.035). No significant differences were found in sociodemographic variables. No differences in pre-test or post-test were found in effect of HRT. 85.6% of patients found the content of HowRwe “Useful”, and the preferred channel to respond it were paper, app and email. ConclusionsThe Spanish version of the ‘HowRwe’ questionnaire to measure the experience in respiratory patients with home respiratory treatments (HRT), has adequate psychometric properties and conceptual and semantic equivalence with the original English version.

Multilingual Framework for Risk Assessment and Symptom Tracking (MRAST).

The importance and value of real-world data in healthcare cannot be overstated because it offers a valuable source of insights into patient experiences. Traditional patient-reported experience and outcomes measures (PREMs/PROMs) often fall short in addressing the complexities of these experiences due to subjectivity and their inability to precisely target the questions asked. In contrast, diary recordings offer a promising solution. They can provide a comprehensive picture of psychological well-being, encompassing both psychological and physiological symptoms. This study explores how using advanced digital technologies, i.e., automatic speech recognition and natural language processing, can efficiently capture patient insights in oncology settings. We introduce the MRAST framework, a simplified way to collect, structure, and understand patient data using questionnaires and diary recordings. The framework was validated in a prospective study with 81 colorectal and 85 breast cancer survivors, of whom 37 were male and 129 were female. Overall, the patients evaluated the solution as well made; they found it easy to use and integrate into their daily routine. The majority (75.3%) of the cancer survivors participating in the study were willing to engage in health monitoring activities using digital wearable devices daily for an extended period. Throughout the study, there was a noticeable increase in the number of participants who perceived the system as having excellent usability. Despite some negative feedback, 44.44% of patients still rated the app's usability as above satisfactory (i.e., 7.9 on 1-10 scale) and the experience with diary recording as above satisfactory (i.e., 7.0 on 1-10 scale). Overall, these findings also underscore the significance of user testing and continuous improvement in enhancing the usability and user acceptance of solutions like the MRAST framework. Overall, the automated extraction of information from diaries represents a pivotal step toward a more patient-centered approach, where healthcare decisions are based on real-world experiences and tailored to individual needs. The potential usefulness of such data is enormous, as it enables better measurement of everyday experiences and opens new avenues for patient-centered care.

Adaptation and validation of a patient-reported compassion measure in the Spanish population: The Spanish version of the Sinclair Compassion Questionnaire (SCQesp).

International practice guidelines and policies recognize compassion as a fundamental dimension of quality care. A key element in enhancing compassion in healthcare settings is having reliable patient-reported experience measures. In the Spanish context, there is a need for a valid Spanish patient-reported compassion measure for use in both research and clinical practice. The Sinclair Compassion Questionnaire (SCQ) represents the gold standard for patient-reported compassion measures in English-speaking settings. The primary aim of this study is to culturally adapt and validate the SCQ in a Spanish population. A Spanish version of the SCQ (SCQesp) was used to collect data from 303 Spanish patients (in two contexts: hospitalized and medical visit). Confirmatory factor analysisconfirmed a one-factor solution in the 15-item (SCQesp) and five-item (SCQesp-SF) short form version. The SCQesp showed excellent values of reliability: Cronbach's α = 0.98; composite variance = 0.98 (0.905-0.854); and stratified variance = 0.78. The SCQesp-SF showed similar values of reliability. The SCQesp has excellent psychometric properties, making it a valid and reliable measure for assessing compassion in healthcare research and clinical care. This scientifically rigorous and psychometrically robust compassion measure in Spanish could allow healthcare providers, researchers, and leaders to routinely assess compassion.