Patient-reported Experience Research Articles

Integrated Text Messaging (ITM) for people attending cardiac and pulmonary rehabilitation: A multicentre randomised controlled trial

BackgroundPeople living with cardiac and respiratory disease require improved post-hospital support that is readily available and efficient. ObjectivesTo 1) test the effectiveness of an automated, semi-personalised text message support program on clinical and lifestyle outcomes amongst people attending cardiac and pulmonary rehabilitation. Also, 2) to evaluate the program's acceptability and utility using patient-reported outcome and experience measures. MethodsMulticentre randomised controlled trial (3:1, intervention:control) amongst cardiac and pulmonary rehabilitation attendees. Control received usual care (no message program). Intervention also received a 6-month text message lifestyle and support program. Primary outcome was 6-minute walk distance (6MWD). Secondary outcomes included clinical measures, lifestyle, patient-reported outcome and experience measures, medication adherence and rehabilitation attendance. ResultsA total of 316 participants were recruited. They had a mean age of 66.7 (SD 10.1) years. Sixty percent were male (190/316) and 156 were cardiac rehabilitation participants. The cohort's mean baseline 6MWD was higher in the intervention than the control group. At 6 months, 6MWD improved in both groups; it was significantly greater amongst intervention than control participants (unadjusted mean difference of 43.4 m, 95 % CI 4.3 to 82.4; P = 0.0296). After adjustment for baseline values, there was no significant difference between intervention and control groups for 6MWD (adjusted mean difference 2.2 m, -21.2 to 25.6; P = 0·85), medication adherence, or cardiovascular risk factors. At 6-month follow-up, intervention participants reported significantly lower depression scores (adjusted mean difference -1.3, 95 % CI -2.2 to -0.3; P = 0.0124) and CAT scores (adjusted mean difference -3.9, 95 % CI -6.6 to -1.3; P = 0.0038), and significantly lower anxiety (adjusted mean difference -1.1, 95 %CI -2.1 to 0; P = 0.0456). Most participants (86 %) read most of their messages and strongly/agreed that the intervention was easy to understand (99 %) and useful (86 %). ConclusionsAn educational and supportive text message program for cardiac and pulmonary rehabilitation attendees improved anxiety and depression plus program attendance. The program was acceptable to, and useful for, participants and would be suitable for implementation alongside rehabilitation programs. Trial registration numberACTRN12616001167459

Exploring how to trigger the use of patient-reported information for quality improvement in multi-stakeholder governance

PurposeValue-based healthcare suggested using patient-reported information to complement the information available in the medical records and administrative healthcare data to provide insights into patients' perceptions of satisfaction, experience and self-reported outcomes. However, little attention has been devoted to questions about factors fostering the use of patient-reported information to create value at the system level.Design/methodology/approachAction research design is carried out to elicit possible triggers using the case of patient-reported experience and outcome data for breast cancer women along their clinical pathway in the clinical breast network of Tuscany (Italy).FindingsThe case shows that communication and engagement of multi-stakeholder representation are needed for making information actionable in a multi-level, multispecialty care pathway organized in a clinical network; moreover, political and managerial support from higher level governance is a stimulus for legitimizing the use for quality improvement. At the organizational level, an external facilitator disclosing and discussing real-world uses of collected data is a trigger to link measures to action. Also, clinical champion(s) and clear goals are key success factors. Nonetheless, resource munificent and dedicated information support tools together with education and learning routines are enabling factors.Originality/valueCurrent literature focuses on key factors that impact performance information use often considering unidimensional performance and internal sources of information. The use of patient/user-reported information is not yet well-studied especially in supporting quality improvement in multi-stakeholder governance. The work appears relevant for the implications it carries, especially for policymakers and public sector managers when confronting the gap in patient-reported measures for quality improvement.

The experience of dry mouth and screening for Sjogren’s syndrome by the dentist: patient-reported experiences

BackgroundOne of the main clinical features of Sjögren’s Syndrome is oral dryness, which is associated with an increased risk of oral diseases and a lower oral life quality. Dentists have a key role to play in the Sjögren’s Syndrome diagnosis and specific management. In parallel, many patients rely on patient associations, which offer opportunities for members to seek information about their disease and share their experiences. We aimed to evaluate patients experience with dry mouth and the importance of dentists in Sjögren’s Syndrome diagnosis and its management.MethodsWe carried out a cross-sectional survey in 2020 based on a questionnaire drafted in collaboration with clinicians specializing in Sjögren’s Syndrome and patient members of a patient association. The survey consisted of 27 questions divided into the six sections: the patient’s profile, their experience with dry mouth and treatments used to manage, characteristics of experienced oral-health problems, effects of dry mouth and its consequences on the quality of life, evaluation of the dentist role in the screening of Sjögren’s Syndrome, and its management by the dentist. Recruitment was carried out via the patient association’s newsletter, website, and social networks. Sjögren’s diagnosis was self-reported.ResultsOne thousand four hundred fifty-eight patients fully responded to the survey. Most respondents were women over 50 and were mainly concerned with primary Sjögren’s Syndrome. Overall, 86.97% of respondents reported experiencing frequent or constant dry mouth and 69.01% declared having had oral problems (candidiasis, oral pain, loss or alteration of taste, bad breath, gastro-esophageal reflux). We found a positive correlation between the frequency of dry mouth and each of these disorders and between the frequency of dry mouth and alterations in life quality dimensions. Finally, 74.9% of patients did not report having dry mouth to their dentist prior to being diagnosed with Sjögren’s Syndrome and 58% had not been informed about the oral risks associated with it by their dentist and sought information themselves or from their physician.ConclusionsWe confirm the significant consequences of dry mouth on oral quality of life, as well as its association with oral health problems. Sjögren’s Syndrome screening by dentists should be increased, as well as prevention of the associated oral health risks.

The value of using patient-reported outcomes for health screening during long-term follow-up after paediatric stem cell transplantation for nonmalignant diseases.

The assessment of using patient-reported outcomes (PROs) within comprehensive care follow-up programmes, specifically focused on health screening, remains largely unexplored. PROs were implemented in our late effects and comprehensive care programme after paediatric hematopoietic stem cell transplantation (HSCT) for nonmalignant diseases. The programme focuses solely on screening of physical and mental health and on discussing PROs during the consultation. The primary method of this study was semistructured interviews to explore the perspective of both patients and healthcare providers' (HCP) on the use of PROs, which were thematically analyzed. Additionally, an explorative quantitative approach with patient-reported experience measures (PREMS) was used, with a pretest-posttest design, to assess whether the use of PROs was accompanied by more patient-centred care. From the patient-interviews (N = 15) four themes were extracted: use of PROs (1) help to discuss topics; (2) make the patients feel understood; (3) create a moment of self-reflection; and (4) make consultations more efficient. Pre- and postimplementation analysis of PREMs (N = 40) did not show significant differences in terms of patient-centeredness. Our results demonstrate the added value of integrating PROs for health screening purposes within the long-term follow-up programme after paediatric HSCT, as perceived by both patient and HCP. With the active use of PROs, patients are stimulated to consciously assess their health status. This study included patients as participants. Caregivers were approached if patients were below a certain age. Additionally, preliminary results were shared with all patients (including nonparticipants) during a patient conference day.

The feasibility of a multidimensional intervention in lymphoma survivors with chronic fatigue

PurposeChronic fatigue (CF) affects 25–30% of lymphoma survivors, but interventions designed to reduce fatigue are lacking. The main aim of this study was to test the feasibility of a multidimensional intervention study in lymphoma survivors with CF. Secondary aims were to describe individual changes in fatigue, quality of life (QoL) and physical performance from pre (T0) to post (T1) intervention.MethodsThis feasibility study was as a one-armed intervention study performed in 2021. Hodgkin or aggressive non-Hodgkin lymphoma survivors received mailed study information and Chalder Fatigue Questionnaire and were asked to respond if they suffered from fatigue. The 12-week intervention included patient education, physical exercise, a cognitive behavioural therapy (CBT)-based group program and nutritional counselling. Feasibility data included patient recruitment, completion of assessments, adherence to the intervention and patient-reported experience measures. Participants responded to questionnaires and underwent physical tests at T0 and T1.ResultsSeven lymphoma survivors with CF were included. Of all assessments, 91% and 83% were completed at T0 and T1, respectively. Adherence to the interventional components varied from 69% to 91%. At T1, all participants rated exercise as useful, of whom five rated the CBT-based program and five rated individual nutritional counselling as useful. Five participants reported improved fatigue, QoL and physical performance.ConclusionLymphoma survivors with CF participating in a multidimensional intervention designed to reduce the level of fatigue showed high assessment completion rate and intervention adherence rate. Most of the participants evaluated the program as useful and improved their level of fatigue, QoL and physical performance after the intervention.Trial registrationClinicalTrials.gov, identifier: NCT04931407. Registered 16. April 2021-Retrospectively registered. https://www.clinicaltrials.gov/ct2/show/NCT04931407

Outpatients’ perspectives of quality in rehabilitation – development and validation of a patient-reported experience measure (PREM)

Purpose This study aimed to develop and validate a patient-reported experience measure (PREM) to examine the patients’ perspectives on the quality of outpatient physiotherapy and occupational therapy rehabilitation. Materials and methods A systematic literature search in PubMed, Embase, Scopus, and Cinahl was conducted to identify relevant themes for the questionnaire. Fourteen studies were analyzed through a systematic text condensation to identify quality aspects in the rehabilitation from patients’ perspectives. Further, based on the analysis, 13 items with answers on a five-point Likert scale were developed. Face validity and content validity were established during interviewing 14 municipality outpatients. Finally, to determine the construct validity and internal consistency, the questionnaire was distributed to 385 patients with various diagnoses. Results The final questionnaire, Outpatients’ Experience of quality in Rehabilitation (OPER), demonstrated good face and content validity and covered patients’ experience of quality in municipal rehabilitation. Data from 307 respondents established construct validity and high internal consistency and showed, in general, a positive experience of outpatient rehabilitation. Conclusions The OPER demonstrates satisfactory psychometric properties based on an extensive development and validation process. By assessing outpatients’ experience of the rehabilitation process, OPER offers a measurement of the quality of therapists’ practice of patient-centered rehabilitation.

Patient-reported experience is associated with higher future revenue and lower costs of hospitals

BackgroundDespite the established positive association between patient experience and patient volume, the relationship between patient experience and the financial performance of hospitals has not been studied thoroughly.MethodsTo investigate this relationship, we used longitudinal data from 132 Swiss acute-care hospitals from 2016 to 2019 to examine the associations between patient experience and the proportion of elective patients, revenue, costs, and profits of hospitals. To account for a potential time lag effect, we utilized annual patient experience data and employed multilevel mixed-effects regression modeling to investigate its association with the aforementioned financial performance indicators for the following year.ResultsData for private and public hospitals were analyzed both separately and in combination, to account for the different proportions of elective patients in these types of hospitals. The resulting mixed models, revealed that for each year studied, the previous year’s patient experience was positively associated with the current year’s proportion of elective patients (β = 0.09, p = 0.004, all hospitals) and revenue (β = 1789.83, p = 0.037, private hospitals only), and negatively associated with costs (β = − 1191.13, p = 0.017, all hospitals); but not significantly associated with future profits (β = 629.12, p = 0.240, all hospitals).ConclusionsThis analysis showed that better patient experience is associated with a higher proportion of elective patients, greater revenue, and lower costs. Our findings may assist hospital managers and regulators in identifying strategies to increase revenue and reduce costs.

Patient-reported experiences during and following treatment with belantamab mafodotin for relapsed/refractory multiple myeloma in the DREAMM-2 study.

Patients with relapsed or refractory multiple myeloma (RRMM) are likely to be living with persistent symptoms, especially bone pain and fatigue, and experiencing restrictions in their physical and social functioning, which reduce health-related quality of life. This qualitative interview study evaluated patients' perspectives about living with RRMM and their treatment with belantamab mafodotin, using interviews embedded in the Phase II DREAMM-2 trial (NCT03525678) with belantamab mafodotin. Patients consented to participate in up to 2 recorded telephone interviews (at treatment cycle 4 [C4] and at end of treatment [EOT]) comprising open-ended questions. A total of 142 interviews were conducted with 111 unique patients. At C4, common symptoms included neuropathy, fatigue, and bone or joint pain. Improvements in symptom severity were reported by patients who responded to belantamab mafodotin. Symptoms associated with visual impairment, eye irritation, and eye pain reported during the trial were reported to be at- or near-resolution by the EOT interview. Regarding impacts of underlying MM, patients most commonly expressed concerns about changes in daily performance and lifestyle for both responders (67.5% of all impact expressions) and non-responders (63.2%). Overall, interview participants reported being satisfied with belantamab mafodotin treatment. This qualitative patient interview study provides valuable insight into patients' symptomatic experience with belantamab mafodotin for their RRMM treatment and may help healthcare providers better anticipate their patients' real-world experience and needs when prescribing this novel agent in the clinic.

Translation, cultural adaptation and validation of a patient-reported experience measure for children.

There is no national, validated, generic patient-reported experience measure (PREM) for children under 15 years of age in Sweden. A recent cross-sectional study found no consensus in how children's voices are heard in paediatric health care, as well as a lack of validated questionnaires. The aim of this study is to translate, adapt and validate the six versions of the Children's and Young People's PREM for use in a Swedish health care context. An exploratory sequential mixed-method design including cognitive interviews and content validity index (CVI) was used. The interviews focused on evaluating children's understanding of the questionnaire, and the CVI was used to further adjust the relevance of the questionnaire. A convenience sample of 62 children participated in the cognitive interviews and an additional convenience sample of 42 children was included in the CVI testing. The children, aged 8-16 years, were attending routine visits at paediatric departments in a county hospital and a children's hospital in the mid-Sweden region between October 2020 and June 2022. The translation, adaptation and validation process identified several issues regarding the understanding of the questionnaire in a Swedish context. Adaptations were made based on issues related to context, wording and the structure of the questions. CVI testing resulted in the removal of 3-10 questions in each of the different versions of the questionnaire. The study has resulted in six face- and content-validated Swedish versions of the questionnaire ready for pilot testing. Although the versions of the original questionnaire were developed in collaboration with children in the United Kingdom, this did not mean that they could automatically be used in a Swedish health care context. This study confirms the importance of a rigorous process of adaptation and validation to ensure quality and applicability to children accessing health care in different countries. Children's views have guided the development of the original instrument and its adaptation to the Swedish health care context. Due to the strong patient involvement in the process of developing the Swedish versions of the questionnaire, the research group made a pragmatic decision to have no other patient contribution in the study.

Supply-related data and agile project management - what do they have to do with each other?

Cochrane postulates that ‚the best available evidence‘ (www.cochrane.org) must be the basis for medical decisions and that the quality of the study design is therefore crucial. From this it can be concluded that, in addition to randomised controlled trials (RCTs), healthcare-related data can also be used. Questions relating to particularly rare diseases, which increasingly include ever smaller subgroups of common diseases (individualised therapies, e.g. based on certain genetic characteristics), as well as increasingly important endpoints such as Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs) cannot be clarified in an RCT. Instead of a specific study design, the focus should be on the quality of studies. It is therefore by no means a question of weakening requirements, but rather of consistently increasing the quality of studies in which new data sources can also be included. The following text is a reflection on the workshop ‚RWE - Fit-for-purpose‘ at the MSD Health Forum 2023, on the one hand, and some thoughts on the undogmatic handling of data sources based on ideas from management theory, on the other.

Initial findings with the PATient experience in the CATH Lab (PATCATH) patient-reported experience metric.

Initial findings with the PATient experience in the CATH Lab (PATCATH) patient-reported experience metric.

Russian-language translation and cultural adaptation of the Norwegian ‘Patient Experience Questionnaire’

The availability of patient-reported experience measures (PREM) is an unmet need in Russian healthcare. To translate, adapt culturally, and validate PREM for outpatients. A core set of questions from the Patient Experience Questionnaire (PEQ, in Norwegian, available in English) was translated to Russian (forward-backward translation). Acceptability, construct validity, and reliability were assessed. Patients aged ≥18 y.o. were invited to complete the questionnaire via QR-code within 24 h after a medical encounter. A questionnaire with adequate conceptual and linguistic equivalence was obtained. For four questions, a rating scale was replaced by Likert-type. A total of 308 responses were received (median age 55 y.o., 52% females). The correlation matrix was factorable. Four factors were extracted using varimax rotation: 1) outcome of this specific visit; 2) communication experiences; 3) communication competency; 4) emotions after this visit. These explained 65.4% of the total variance. Three items were excluded. The model was confirmed to be adequate. The Cronbach alpha was >0.9. Item-total correlation confirmed discriminative validity. These preliminary results show that the Russian version of PEQ, adapted to national features, shows good psychometric properties. External validation is needed for the broad implementation of this PREM. This research is first attempt to use PREM in the Russian Federation. The use of quick response codes is feasible and eases survey conduction. The more PREMs are used the higher the quality of healthcare.

A Core Outcome Set for Inflammatory Bowel Diseases: Development and Recommendations for Implementation in Clinical Practice Through an International Multi-stakeholder Consensus Process.

Standardising health outcome measurements supports delivery of care and enables data-driven learning systems and secondary data use for research. As part of the Health Outcomes Observatory [H2O] initiative, and building on existing knowledge, a core outcome set [COS] for inflammatory bowel diseases [IBD] was defined through an international modified Delphi method. Stakeholders rated 90 variables on a 9-point importance scale twice, allowing score modification based on feedback displayed per stakeholder group. Two consecutive consensus meetings were held to discuss results and formulate recommendations for measurement in clinical practice. Variables scoring 7 or higher by ≥80% of the participants, or based on consensus meeting agreement, were included in the final set. In total, 136 stakeholders (45 IBD patients [advocates], 74 health care professionals/researchers, 13 industry representatives, and four regulators) from 20 different countries participated. The final set includes 18 case-mix variables, three biomarkers [haemoglobin to detect anaemia, C-reactive protein and faecal calprotectin to detect inflammation] for completeness, and 28 outcomes (including 16 patient-reported outcomes [PROs] and one patient-reported experience). The PRO-2 and IBD-Control questionnaires were recommended to collect disease-specific PROs at every contact with an IBD practitioner, and the Subjective Health Experience model questionnaire, PROMIS Global Health and Self-Efficacy short form, to collect generic PROs annually. A COS for IBD, including a recommendation for use in clinical practice, was defined. Implementation of this set will start in Vienna, Berlin, Barcelona, Leuven, and Rotterdam, empowering patients to better manage their care. Additional centres will follow worldwide.

The patient’s first point of contact (PINPOINT) – protocol of a prospective multicenter study of communication and decision-making during patient assessments by primary care registered nurses

BackgroundA major challenge for primary care is to set priorities and balance demands with available resources. The registered nurses in this study are practice nurses working in primary care offices, playing a large role in initial assessments. The overall objective of this research is to investigate practices of communication and decision-making during nurses’ initial assessment of patients’ health problems in primary care, examine working mechanisms in good practices and develop feasible solutions.MethodsProject PINPOINT aims for a prospective multicenter study using various methods for data collection and analysis. A purposive sample of 150 patient‒nurse consultations, including 30 nurses and 150 patients, will be recruited at primary care centers in three different geographic areas of southwest Sweden. The study will report on outcomes of communication practices in relation to patient-reported expectations and experiences, communication processes and patient involvement, assessment and decision-making, related priorities and value conflicts with data from patient questionnaires, audio-recorded real-time communication, and reflective interviews with nurses.DiscussionThis research will contribute to the knowledge needed for the guidance of first-line decision-making processes to best meet patient and public health needs. This knowledge is necessary for the development of assessments and decisions to be better aligned to patients and to set priorities. Insights from this research can empower patients and service providers and help understand and enhance feasible person-centered communication strategies tailored to patients’ level of health literacy. More specifically, this research will contribute to knowledge that can strengthen nurses’ communication, assessments, and clinical decision-making in primary care. In the long term, this will contribute to how the competencies of practice nurses and other professionals are organized and carried out to make the best use of the resources within primary care.Trial registrationClinicalTrials.gov Identifier: NCT06067672.

Real-World Outcomes and Digitally Monitored Quality of Life in Voxelotor-Treated Patients with Sickle Cell Disease

Background Voxelotor is a haemoglobin oxygen-affinity modulator that leads to inhibited red blood cell sickling, has demonstrated reduced markers of haemolysis and anaemia improvement, and is one of a small number of novel disease-modifiers approved in the US for sickle cell disease (SCD) treatment. It has marketing authorisation in the UK and is currently undergoing reimbursement appraisal. The modelled impact of voxelotor on health-related quality of life (HRQoL)remains a key issue in current trial evidence. Therefore, the need for real-world data and understanding of patient-reported outcomes and experiences following treatment remains critical. Aims This work sought to characterise the side effects, HRQoL, and wearable-captured sleep and activity metrics of SCD patients in the UK, before and after treatment initiation. Methods Feedback from 19 SCD patients who had received voxelotor was captured through an online survey (Aug 2022-Mar 2023). 15 of these patients were also consented and enrolled within an artificial intelligence (AI) platform of over 600 SCD patients that combined genomic, medical record, real-time wearable biometric, and patient-reported outcomes data into a single platform. This included a mobile phone app for day-to-day QoL questionnaire (EQ-5D-5L) entry and an FDA-cleared smartwatch to capture sleep quality and physical activity. Convenience sampling selected data for a 17-patient (89%) subcohort with available pre- and post-voxelotor initiation EQ-5D-5L scores, either through the platform or follow-up survey snapshots. For each patient, this was analysed up to the date on which they completed the survey. EQ-5D-5L was also analysed in comparison to platform patients who had hydroxyurea (HU) in the past (n=19) or were receiving HU at the time of analysis (n=60), in addition to those with no recorded HU use (n=116). Additional analysis compared pre- and post-initiation activity levels (n=6), 4 of whom also had sleep quality data. Results The 19 surveyed patients had received voxelotor for a mean ± SD (range) of 194 ± 415 (17-1,826) days. 11 (58%) had also received HU and 1 (5%) received crizanlizumab. The mean age was 33 ± 13 (14-52) years, 12 (63%) were male, and 16 (84%) had HbSS. Side effects were reported in 8 (42%) patients, mostly diarrhea (6, 32%), stomach pains (2, 11%), and nausea/vomiting (2, 11%). Comparison of the 17-patient pre- to post-voxelotor cohort showed a statistically significant (p<0.001) increase in pooled EQ-5D-5L scores, from 0.558 ± 0.314 to 0.761 ± 0.262 (Figure 1). Post-initiation EQ-5D-5L for these 17 patients was significantly higher than for those receiving HU at 0.731 ± 0.232 (p=0.023) or who had previously received HU at 0.704 ± 0.256 (p=0.040) (Figure 2). Analysis of pre- and post-initiation wearables data saw increased deep sleep in 50% (2/4) and decreased nightly wakeups in 50% (2/4) of patients. Pooled pre- and post-initiation data showed a significant difference in deep sleep (43% vs. 47%, p=0.011). The mean number of steps and distance increased for 50% (3/6) of patients. While soft activity (Metabolic Equivalent of Task (METs): <3, e.g., sleeping, sitting quietly, slow walk) decreased for 67% (4/6) of patients, moderate activity (MET: 3-6, e.g., fast walk, cleaning, gardening) increased in 67% (4/6) and intense activity (MET: >6, e.g., running, hiking) increased in 60% (3/5). Conclusions Our data present a different lens to the voxelotor treatment experience of patients in the UK, with a side effect profile similar to that of other published studies. We demonstrated that EQ-5D-5L increased by 0.203 pre- to post-initiation, and was 0.030 and 0.057 higher than those receiving HU and those who had previously received HU, respectively, in the voxelotor-treated group. These are in line with the ranges of minimally important differences (0.030-0.098) reported for the EQ-5D-5L in other chronic diseases. As such and despite the limitations of small sample size and variability in pre- to post-initiation changes, a statistically significant improvement in HRQoL was observed after initiating voxelotor, as well as in comparison to HU treatment pathways. Similarly, pre- and post-initiation wearables data demonstrated early positive trends in voxelotor's impacts on sleep and activity using an FDA-cleared device, highlighting a need for further research into these metrics and the impact of SCD-modifying treatment.

Unlocking Insights: A Single Centre Patient-Reported Outcome Experience in Patients with Severe Hemophilia a without Inhibitors on Emicizumab

Introduction: Emicizumab (Hemlibra®) prophylaxis has been demonstrated to be more effective at decreasing bleeding episodes than the factor VIII infusions that had previously been used as bleeding prophylaxis. Emicizumab has been available in Canada for persons with hemophilia A with baseline FVIII <1% without inhibitors as a form of prophylaxis since October 2021. Previous work by our team used the Patient-Reported Outcomes, Burdens and Experiences (PROBE) survey to assess outcomes following the initiation of Emicizumab in our local population, which demonstrated a positive overall trend in composite scores generated by the survey following treatment initiation. The PROBE instrument includes the EQ5D5L instrument as a generic quality of life assessment, which consists of 5 dimensions. Aims: The explicit aim of this study was to assess changes in EuroQuol-5D-5L (EQ5D5L) index utility scores and dimensions as well as Visual Analog Scores (VAS) scores at 3 and 6 months following Emicizumab introduction to gain insight into the clinical impact beyond bleeding rates. Methods: In partnership with the PROBE Investigators, individualized non-identifying survey links were generated by the clinic and provided to all transitioning patients who then consented within the PROBE link to complete the survey. Responses were shared with the clinic and decoded to allow identification. Previously, composite scores for the relevant patients were identified at 0, 3 and 6 months to assess the patient-reported clinical trajectory following Emicizumab introduction. Here, the EQ5D5L scores were analyzed using descriptive statistics and the minimal clinically important difference (MCID) was calculated for each EQ5D5L dimensions (MCID is a change between 2-4) and the VAS (MCID is a change of 10). Results: 65/85 (76%) of eligible patients ≥ 18 years of age in British Columbia transitioned as of June 1, 2023. 54 patients (mean age 39.3, median 36 with a total age range of 19-59) completed a baseline PROBE survey as part of usual clinical care prior to the Emicizumab transition. 26 patients completed PROBE surveys at 0 and 3 months and 11 patients completed PROBE surveys at 0-, 3- and 6-month intervals. Mean baseline PROBE (/1), EQ5D5L (/1) and VAS (/100) scores were 0.779 (SD 0.15), 0.789 (SD 0.15) and 72.01 (SD 18.65), respectively. EQ5D5L domains are each scored /5 where higher numbers corresponded to worse outcomes; the 5 domains include mobility, self-care, usual activities, pain/discomfort, and anxiety/depression. At 3 months, the MCID for EQ5D5L domains was met by 1 person in both usual activities and anxiety/depression. At 6 months, the MCID was met by 1 person in each of the subsections of the EQ5D5L and by 2 individuals in the usual activities dimension. Higher VAS scores correspond to better health. At 3 months, the MCID for VAS was met by 42% (11/26) with the majority (7/11) observed to have a higher VAS score than at baseline. At 6 months, the MCID was met by 45% (5/11) with the majority (4/5) having a higher VAS score than at baseline. Conclusion: Within our small cohort, EQ5D5L index utility scores consistently improved at 3 and 6 months from the time of Emicizumab initiation. Of the EQ5D5L domains, the MCID was met at 3 months in both usual activities and anxiety/depression by 1 person and in all parameters at 6 months by at least 1 person. Analysis of the VAS scores indicated a consistent perceived improvement by 42% at 3 months and in the majority participants at 6 months. Using the EQ5D5L was feasible to better understand the patient experience for those with Hemophilia A without inhibitors following Emicizumab introduction and provides insight into the specific patient-reported outcomes that are impacted by this treatment transition.

Co-design of a Mobile App for Engaging Breast Cancer Patients in Reporting Health Experiences: Qualitative Case Study.

The World Health Organization recommends incorporating patient-reported experience measures and patient-reported outcome measures to ensure care processes. New technologies, such as mobile apps, could help report and monitor patients' adverse effects and doubts during treatment. However, engaging patients in the daily use of mobile apps is a challenge that must be addressed in accordance with the needs of people. We present a qualitative case study documenting the process of identifying the information needs of breast cancer patients and health care professionals during the treatment process in a Chilean cancer institution. The study aims to identify patients' information requirements for integration into a mobile app that accompanies patients throughout their treatment while also providing features for reporting adverse symptoms. We conducted focus groups with breast cancer patients who were undergoing chemotherapy (n=3) or who completed chemotherapy between 3 months and 1 year (n=1). We also surveyed health care professionals (n=9) who were involved in patient care and who belonged to the oncology committee of the cancer center where the study took place. Content analysis was applied to the responses to categorize the information needs and the means to satisfy them. A user interface was designed according to the findings of the focus groups and was assessed by 3 trained information system and user interaction design experts from 2 countries, using heuristic evaluation guidelines for mobile apps. Patients' information needs were classified into 4 areas: an overview of the disease, information on treatment and day-to-day affairs, assistance on the normality and abnormality of symptoms during treatment, and symptoms relevant to report. Health care professionals required patients to be provided with information on the administrative and financial process. We noted that the active involvement of the following 4 main actors is required to satisfy the information needs: patients, caregivers, social network moderators, and health professionals. Seven usability guidelines were extracted from the heuristic evaluation recommendations. A mobile app that seeks to accompany breast cancer patients to report symptoms requires the involvement of multiple participants to handle the reports and day-to-day information needs. User interfaces must be designed with consideration of the patient's social conventions and the emotional load of the disease information.

Development and validation of a Type 1 and Type 2 diabetes-specific patient-reported experience measure e-questionnaire: Diabetes reported experience measures (DREMS)

IntroductionSuccessful diabetes management is associated with an effective partnership between People with Diabetes (PwD) and healthcare professionals. Though possible to measure using Patient-Reported Experience Measures (PREMs), none are specific to Type 1 or Type 2 Diabetes (T1D/T2D) and validated in French. Thus, we developed and validated the DREMS (Diabetes Reported Experience MeasureS) e-questionnaire. MethodologyDREMS is comprised of 18 items evaluating 5 different factors. Validation for use by PwT1D and PwT2D (recruited online) was performed using: Exploratory Factor Analysis (EFA); Confirmatory Factor Analysis (CFA) and Cronbach's Alpha. Test-retest reliability was evaluated through Intraclass Correlation Coefficients (ICC) in a subsample. ResultsDREMS was tested by 2,513 respondents, including 942 PwT1D and 1,571 PwT2D. For both groups, EFA results indicated 18 items loaded substantially onto 5 clear factors. CFA showed all coefficients were significant in their respective factors. Goodness-of-fit, assessed using the Comparative Fit Index was >0.90 and by the RMSEA was <0.080. Cronbach's α for the entire DREMS e-questionnaire was ≥0.90. ICC was 0.87 for PwT1D (n = 136) and 0.74 for PwT2D (n = 169). InnovationDREMS is the first validated French-language diabetes-specific PREM for both PwT1D and PwT2D and can be useful to evaluate and improve health care management and patient health.

Association between patient choice ofprovider andpatient-reported experience.

Health providers are striving to create a more positive, patient-centred experience. However, existing scholarly research about the association between determinants of patient choice of provider and patient-reported experience remains insufficient to effectively promote patient-centredness in healthcare systems. This study used a sample from the nationally representative 2020 Healthcare Experience Survey. Among the respondents (n = 12 133), 6809 who used outpatient services were selected for analysis. The variable of interest was the determinant of the patient choice of provider, and the dependent variables were patient-reported experiences (e.g. general satisfaction, experience with doctors, and experience with health providers and nurses). Data were analyzed using a multivariable logistic regression model by correcting for covariates. General satisfaction was positively associated with providers' expertise factors and public image factors [providers' expertise factors: odds ratio (OR), 2.96; 95% confidence interval (CI), 2.44-3.59; public image factors: OR, 1.26; 95% CI, 1.02-1.55] satisfied more general satisfaction. Similar results were found for experience with doctors (providers' expertise factors: OR, 4.50; 95% CI, 2.77-7.32; other factors: OR, 0.37; 95% CI, 0.16-0.81) and experience with health providers and nurses (providers' expertise factors: OR, 2.66; 95% CI, 1.99-3.57; image factors: OR, 1.53; 95% CI, 1.09-2.14). Our study's findings suggest that to improve patient-reported experience, health providers must better manage providers' expertise factors and public image factors. Health providers can improve patient-reported experience by increasing communication skills and proper information about the nature is important. Moreover, health providers must manage public image factors comprehensively and continuously by maintaining good quality of care and to brand patients.

Patient-reported side effects and satisfaction of pre-hospital analgesia with low-dose esketamine: a cross-sectional study

BackgroundAnalgesia is a core intervention in emergency medicine. Pain is subjective, so patient-reported experience with pain and analgesia is essential for healthcare professionals.The aim of this study was to evaluate patient-reported side effects and satisfaction associated with pre-hospital analgesia with low-dose esketamine.MethodsThis is an observational cross-sectional study conducted as part of quality assurance measures of the German Red Cross Emergency Medical Service, Reutlingen, Germany.The survey was administered to all patients who received prehospital esketamine analgesia from paramedics. Addresses were obtained from medical records and mailed 10 days after the event. Patient feedback was anonymous and could not be linked to operational documentation.ResultsA total of 201 patients were contacted, and 119 responses were received via the online questionnaire and postal mail (response rate 59%). The mean age of the patients was 68±13 years, with 64.7% (n=77) being female. The main diagnosis reported was fractures of the extremities in 69.7%. Patients reported initial median pain intensity on a Numeric Rating Scale (NRS) of 10 [8-10]. Pain was unbearable for 96.3% of patients. After administration of analgesia, 95.3% were satisfied or very satisfied. Patients reported no side effects in 78.5%, minor side effects in 10.0%, significant but well tolerable side effects in 11.3%, borderline tolerable side effects in 0.2%, and no unbearable side effects. Borderline tolerable nausea was reported in 2% of patients along with dreams in 0.8%. No nightmares were reported. Further analysis showed that patients older than 80 years reported significantly more side effects (p < 0.001) and were thus less satisfied with the analgesia.ConclusionsBoth patient perception and analgesia with few side effects were important for both safety and satisfaction. In the present study, low-dose esketamine analgesia was associated with low side effects and high patient satisfaction.