Patient-reported Experience Research Articles

Personalising haemodialysis treatment with incremental dialysis for incident patients with end-stage kidney disease: an implementation study protocol

IntroductionIncremental dialysis is a personalised dialysis prescription based on residual kidney function that allows for the initial use of shorter duration, less frequent and less intense dialysis. It has been...

Gaining Insights Into Patients' Experiences of Remote Diagnostic Screening for Chronic Kidney Disease in Patients With Diabetes.

Introduction: Chronic kidney disease (CKD) affects a significant portion of the UK population and is a pressing public health issue. Current screening methods have a low patient uptake rate. This retrospective study explores the patient experience of remote diagnostic screening. Objective: This article retrospectively analyses patient-reported experiences, focusing on at-home urinary screening to detect CKD. Intervention: Our primary care network commissioned a remote diagnostic service for adult patients with diabetes (Types I and II) who had not taken urinary albumin: creatinine ratio test within 12 months. Patients were provided with an at-home kit and guided by a smartphone application. Qualitative clinical data was collected during screening, with a questionnaire capturing patients' experiences. Impact: A total of 60% of eligible patients performed testing, and 35% were detected to have abnormal results. A total of 80% of patients preferred remote screening. Conclusions: This study provides evidence for remote CKD screening and opens avenues for innovation. Most patients reported a positive experience, underscoring the potential of this approach to improve health outcomes, especially in higher-risk populations.

Comparing Outcomes of Various Non-surgical Treatments, such as Scaling and Root Planing, Ultrasonic Therapy, and Laser Therapy

Abstract Background: Periodontitis is a prevalent inflammatory condition leading to progressive attachment loss and potential tooth loss. Nonsurgical periodontal therapy, including scaling and root planing (SRP), ultrasonic therapy, and laser therapy, is essential in managing periodontitis. This study compares the clinical and patient-reported outcomes of these three treatment modalities to determine their relative effectiveness. Objective: We aimed to compare the clinical outcomes and patient-reported experiences of SRP, ultrasonic therapy, and laser therapy in patients with chronic periodontitis. Materials and Methods: This randomized controlled trial involved 126 participants with moderate-to-severe chronic periodontitis, randomly assigned to one of three groups (42 participants each): Group 1 (SRP), Group 2 (ultrasonic therapy), and Group 3 (laser therapy). Clinical outcomes, including clinical attachment level (CAL), probing depth (PD), and bleeding on probing (BOP), were measured at baseline and 3 months post-treatment. Patient-reported outcomes such as pain, discomfort, and satisfaction were assessed using a visual analog scale. Data were analyzed using analysis of variance, with a P < 0.05 considered statistically significant. Results: All groups showed significant improvements in CAL, PD, and BOP with no significant differences between groups (P > 0.05). Laser therapy resulted in the lowest pain and discomfort scores and the highest satisfaction (P < 0.05). Conclusion: SRP, ultrasonic therapy, and laser therapy are effective nonsurgical treatments for periodontitis, with comparable clinical outcomes. Laser therapy, however, offers superior patient comfort and satisfaction, suggesting that it may be a preferred option for patients sensitive to pain or discomfort.

Patient-reported experience measures (PREMs) in outpatient psychiatry - is there an association to perceived discrimination and devaluation?

Patient-Reported Experience Measures (PREMs) are gaining significance in the field of psychiatry, with patient satisfaction being a key measure. However, it is unclear if patient satisfaction in psychiatry is influenced by variables outside the treatment setting. This brief report thus examines the possible impact of perceived discrimination and devaluation (PDD) on patient satisfaction in the psychiatric outpatient setting. Data from 1,126 individuals who were undergoing or had recently completed treatment at 15 outpatient centers of the Psychiatric University Clinic in Basel, Switzerland, was analyzed. Patient satisfaction was assessed using the Münsterlingen Patient Satisfaction Questionnaire (MüPF), and perceived stigma was measured with the Perceived Discrimination Devaluation Scale. The results revealed a positive small effect size relationship between MüPF and PDD, suggesting that patients who perceived less stigma report higher treatment satisfaction. This relationship may affect most ratings, with the total MüPF score remaining relatively robust against this potential influence. Linear regression analysis indicated that a one-unit increase in PDD score could lead to a maximum change of 1.8 points on the 7-point Likert scale for the MüPF item correlating highest with PDD and 0.4 points on the total MüPF score. These findings highlight the importance of considering perceived stigma when evaluating patient satisfaction with psychiatric outpatient treatment. Future research should investigate associations between stigma, patient satisfaction, treatment outcome, as well as other external factors that may influence patient satisfaction in psychiatric settings.

Development of a Patient-Reported Experience Measure Tool for Ambulatory Patients With Acute Unexpected Needs: The APEX Questionnaire.

Background: The aim of this study was to develop a patient-reported experience measure (PREM) for comparing the experience of care received by ambulatory patients with acute unexpected needs presenting in emergency departments (EDs), walk-in clinics, and primary care practices. Methods: The Ambulatory Patient EXperience (APEX) questionnaire was developed using a 5-phase mixed-methods approach. The questionnaire was pretested by asking potential users to rate its clarity, usefulness, redundancy, content and face validities, and discrimination on a 9-point scale (1 = strongly disagree to 9 = strongly agree). The pre-final version was then tested in a pilot study. Results: The final questionnaire is composed of 61 questions divided into 7 sections. In the pretest (n = 25), median responses were 8 and above for all dimensions assessed. In the pilot study, 63 participants were enrolled. Adjusted results show that access, cleanliness, and feeling treated with respect and dignity by nurses and physicians were significantly better in the clinics than in the ED. Conclusion: We developed a questionnaire to assess and compare experience of ambulatory care in different clinical settings.

Patient Time Spent With Professional Medical Interpreters and the Care Experiences of Patients With Limited English Proficiency.

More time spent with interpreters may support clinician-patient communication for patients with limited English proficiency (LEP), especially when interpreter support before and after clinical encounters is considered. We assessed whether more time spent with interpreters is associated with better patient-reported experiences of clinician-patient communication and interpreter support among patients with LEP. Patients with LEP (n = 338) were surveyed about their experiences with both the clinician and interpreter. Duration of interpreter support during the encounter (in min) and auxiliary time spent before and after encounters supporting patients (in min) were documented by interpreters. Multivariable linear regression models were estimated to assess the association of the time duration of interpreter support and patient experiences of (1) clinician-patient communication, and (2) interpreter support, controlling for patient and encounter characteristics. The average encounter duration was 47.7 min (standard deviation, SD = 25.1), the average auxiliary time was 43.8 min (SD = 16.4), and the average total interpreter time was 91.1 min (SD = 28.6). LEP patients reported better experiences of interpreter support with a mean score of 97.4 out of 100 (SD = 6.99) compared to clinician-patient communication, with a mean score of 93.7 out of 100 (SD = 14.1). In adjusted analyses, total patient time spent with an interpreter was associated with better patient experiences of clinician-patient communication (β = 7.23, P < .01) when auxiliary time spent by interpreters supporting patients before and after the encounter was considered, but not when only the encounter time was considered. Longer duration of time spent with an interpreter was associated with better clinician-patient communication for patients with LEP when time spent with an interpreter before and after the clinician encounter is considered. Policymakers should consider reimbursing health care organizations for time interpreters spend providing patient navigation and other support beyond clinical encounters.

Feasibility of an exergaming training program in type 2 diabetes mellitus: A mixed method study.

Individuals with Type 2 Diabetes Mellitus may benefit from exergaming training. Exergaming, technology-driven physical activities requiring participants to be physically active or exercise to play the game, allows combining cognitive with motor training. This trial aimed to primarily evaluate the feasibility of an exergame-based training protocol. Secondarily, possible effects on physical, functional, and patient-reported outcomes were explored. Type 2 diabetic individuals performed an exergaming protocol on a pressure sensitive platform. After a 6-week control period, training was administered 2-3 times weekly for another six weeks for 30-60 minutes per session. Outcome variables were assessed during baseline (T0), pre-intervention (T1) and twice at postintervention (T1 and T2). An interview after completion ended the study program. Feasibility was determined by recruitment, adherence, compliance, attrition rates, motivation, satisfaction, and technology acceptance. Eleven of 13 participants completed the study protocol. The feasibility criteria adherence-mandatory (86.4%), adherence-voluntary (70.2%), compliance (99.7%), attrition (15.4%) rate, motivation (82%), satisfaction (80%), and technology acceptance (62.5%) were all deemed acceptable, except for the recruitment rate (13.7%). There were inconsistent effects on functional outcomes, appraisal of diabetes, and health-related quality of life. Qualitative patient-reported experience was overall positive, which is in line with the quantitative results. The exergame-based training program is feasible and safe and type 2 diabetic participants' acceptance of this approach was high, although the recruitment procedure needs minor changes. Furthermore, results were obtained that might be useful in selecting appropriate assessments and sample sizes in future trials.

Quality of life and broader experiences of those with acoustic neuroma: a mixed methods approach.

Background Acoustic neuromas (ANs) are consistently associated with decreased quality of life (QOL) related to the physical and psychosocial impacts of symptoms experienced from the tumour and its treatment. This study explored patient-reported experiences of ANs in New Zealand, with a focus on the impact on QOL and the provision of information, support and services. Methods A mixed methods approach was taken, conducting an online community survey that included the Penn Acoustic Neuroma Quality of Life Scale (N = 52). Those who indicated interest were offered semi-structured interviews after the survey (N = 17), which were analysed using content analysis. Results A negative impact on QOL was found, highlighting five key themes in the experiences of people: (1) ongoing physical, social and psychological impacts; (2) information and support from the medical system; (3) autonomy and decision-making; (4) the importance of peer support; and (5) remaining positive - life goes on. Conclusions Our findings indicate areas for improvement that may benefit people's healthcare experience and QOL. Both quantitative and qualitative results identified gaps associated with person-centred care and the need for information, education, emotional support and access to services. Recommendations include a need for more information (verbal and written) during all stages of diagnosis and treatment, shared decision-making and increased access to allied health, including psychological services and support groups.

Process reengineering using DMAIC framework for reduction of waiting time in daycare infusion therapy for better patient experience.

Daycare infusion therapy is an integral aspect of oncology, but increased waiting time raises concerns for patients. Patient-reported experience measures prompted the need to evaluate reasons for prolonged appointment delays. This study seeks to analyze and address patients' concerns, to streamline the process flow and reduce waiting time for daycare infusion therapy thereby enhancing patient experience. The define, measure, analyze, improve, and control methodology was implemented, and its impact on reducing waiting times was evaluated. The objective is to ensure that >85% of patients enter the daycare infusion unit within an hour of their appointment time in 6 months. The baseline data for patient waiting times was measured for a period of 2 months, and the average waiting time was determined. Potential causes contributing to prolonged waiting times were identified through time-motion analysis, with a fishbone diagram categorizing potential causes and a Pareto chart prioritizing them. Plan, do, study, and act cycles were conducted for implementing the changes, and a new process flow mapped. Baseline data showed 32% average adherence to the defined turnaround time of 1 hour, with an average waiting time of 108 minutes. Forty causes were identified for increased waiting time, of which eight were key. Adherence to waiting time turnaround time improved from 32% to 89% and the average waiting time decreased by 59 minutes from 108 minutes, increasing patient satisfaction index by 7.5%. The balancing measures include an increase in operational efficiency and throughput of the unit and the inventory levels of oncology medicine were decreased, leading to a 50% reduction in inventory value, while medication error declined by 0.62%, improving patient safety. The project gained tangible and intangible benefits impacting staff, patients, and relatives while improving operational efficiency. This study, with its scientific and systematic approach, enhanced patient satisfaction, patient safety, and better utilization of resources.

Patient-experiences of osteoporosis care through an Integrated, People-Centred Health Services (IPCHS)-framework lens: an international perspective

Introduction: Aligning healthcare systems worldwide to meet the challenge of caring for the world’s rapidly growing older population is among the most important goals of the World Health Organization (WHO) Decade of Healthy Ageing (2021-2030). This entails ensuring people have broad access to the most effective diagnostic and prevention strategies, treatments and care for diseases that disproportionately impact the aging, such as osteoporosis. Currently, health systems do not succeed in meeting the needs of osteoporosis patients. Previous studies have demonstrated unmet needs in terms of accessibility, affordability, patient-centredness and comprehensiveness. In order to reorient health care systems towards a more integrated approach supporting these rightful demands, the WHO has developed the framework on Integrated, People-Centred Health Services (IPCHS), encompassing five interdependent strategies and 20 substrategies that support health care delivery integration. Whilst these strategies are often implemented by stakeholders, the patient perspective with regard to these strategies is poorly understood. The study aims to analyse the gaps in osteoporosis care as experienced by patients and relate them to IPCHS-strategies.&#x0D; Methods: Individual interviews were performed by two researchers, using a semi-structured interview guide. Interviews were held in English, Dutch, Spanish and French, recorded using screen recording, and transcribed at verbatim. Interviews were first analyzed deductively based on the IPCSH framework, assigning patient responses to one or more substrategies of the five IPCHS strategies. Afterwards, inductive analyses per sub-strategy were performed.&#x0D; Results: Thirty-five (33 women, 2 men) patients from 14 countries were interviewed. From the 20 IPCHS substrategies, patients mostly reported difficulties and shortcomings they experienced in relation to “empowering and engaging individuals and families” such as patient education and shared decision making, and “coordinating care for individuals” with an emphasis on multidisciplinary care pathways, respectively. They also inclined a larger focus is needed on preventive services. High out-of-pocket payments were considered an important barrier in accessing services and comprehensive care. Patients advocated for stronger primary care-based services in which more continuity and follow-up is provided by a dedicated physician.&#x0D; Conclusion: Improvements in integrated, people-centred osteoporosis care should focus on patient-reported experiences with care.&#x0D; Ethical approval: Approval for the study has been provided by the Ethics Committee (EC) of Ghent University Hospital (BC-10951). All participants signed an informed consent form after receiving written and verbal information. This study has been made possible through a value-based partnership between Ghent University and Amgen.

How Patient-Centered is Education and Counseling of Patients on Oral Anticancer Therapy? A Multicenter Cross-sectional study

Background: In the last years, there has been an exponential increase in the number of oral anticancer therapies (OACT). However, no research has yet been conducted on the current quality of patient-centered care (PCC) for patients on OACT in Belgium. Moreover, there was no valid and reliable instrument available to assess PCC tailored to the context of OACT. Therefore, we developed and validated a new patient-reported experience measure (PREM), named the CONTACT-Patient-Centered Care Questionnaire (CONTACT-PCCQ).&#x0D; Aim: The aim of this study was to gain insight in the quality of PCC for patients on OACT using the CONTACT-PCCQ. It was examined which areas of patient-centered education and counseling are currently being performed adequately, according to patients, and which areas require improvement.&#x0D; Methods: This was a multicenter cross-sectional study. Patients were recruited in 11 hospitals in Belgium. They completed the CONTACT-PCCQ online or on paper. The CONTACT-PCCQ consists of 86 items, which all represent a key element (KE) in patient-centered education and counseling for patients on OACT. The items are divided into seven subscales: A1) medication counselling at the start of OACT, A2) follow-up of OACT, B) communication style, C) counseling by hospital treatment team, D) counseling by primary care healthcare professionals, E) psychosocial support, and F) involvement of family and friends. Patients were asked to indicate how they experienced the performance of each KE on a 5-point Likert rating scale. The answer options were dichotomized into ‘performed’ and ‘not performed’. Subsequently, the degree of performance of each item was defined by calculating the proportion of patients that indicated that the item was performed. On subscale-level, mean total scores were calculated.&#x0D; Findings: In total, 266 patients completed the CONTACT-PCCQ. Subscale C ‘Commitment and cooperation between healthcare professionals’, concerning care coordination in the hospital, had the highest mean subscale score. The lowest score was obtained on subscale D ‘Involvement of primary care’. The degree of performance of all items ranged from 22% to 95%. Items regarding specific topics in patient education (e.g., what do to in case of vomiting, which food to avoid during treatment) and adherence monitoring scored low. Low scores were also obtained on the items about the involvement of the community pharmacist and homecare nurse - in contrast to the items regarding the general practitioner. Some other items, e.g., regarding information about vaccinations and palliative care, were also scored low by patients. In general, KEs on communication style (e.g. HCPs left enough opportunity to ask questions, HCPs took sufficient time for a proper conversation) received high scores.&#x0D; Discussion and conclusion: This study gave insight in the overall quality of patient-centered education and counselling for patients on OACT. Three gaps in PCC were uncovered: unmet patient information needs due to shortcomings in patient education, inadequate adherence monitoring, and lacking collaboration with community pharmacists and home care nurses. These results enable hospitals and policy makers to set priorities in care quality improvement for patients on OACT.

Social and Psychological Long-Term Consequences of NMDA Receptor Encephalitis (SAPIENCE) - from patients’ views to patient-centred care

Background and target population: NMDA receptor encephalitis is a rare autoimmune disease with severe neurological and neuropsychiatric symptoms but typically a good functional neurological outcome. Nevertheless, most patients suffer long-term cognitive, psychological, and social impairments that have a significant impact on their well-being and occupational or educational activities-this is of particular concern given the young age of patients (median 21 years). However, because the disease was only recently discovered (2007), these psychosocial effects have not been systematically studied and the resulting impact on patients is not adequately appreciated. The SAPIENCE study is an international scientific project funded by the European Joint Program that aims to characterize the long-term cognitive and psychosocial consequences of this rare disease. The leader of the consortium is Prof. Carsten Finke, Charite Berlin. The Polish team, coordinated by Prof. Donata Kurpas, is responsible for the development of standard protocols, monitoring and training of staff in the study centers where the data are collected, and the corresponding qualitative data analysis.&#x0D; Study Design/Methods: Patients will be extensively studied at three European study sites in three consecutive project levels. Stage 1 includes in-depth on-site interviews and focus groups (n=30). Stage 2 develops a semi-structured short-form interview and includes on-site neuropsychological testing (n=150). Stage 3 includes an international online survey of patient-reported outcome measures (PROMs), patient-reported experience measures (PREMs), and disease progression information (n=300). Stages 1-3 will support each other in developing structured interviews, survey questions, and treatment guidelines.&#x0D; Results/Outcomes: At Level 1, we will identify themes and narratives that influence patients' quality of life and their experience of coping with the disease. At Level 2, we will identify neuropsychological outcomes in the largest cohort of NMDAR encephalitis patients in the world to date, including executive function, memory, and spatial navigation performance, which have been identified as key areas of impairment. At Level 3, we will examine subjective outcomes and individual predictors of post-acute disease progression.&#x0D; Based on Stages 1-3, we will develop international consensus guidelines for post-acute care of NMDARE patients.&#x0D; Impact: This project is the first to bridge the gap between standardized assessment and individual patient experience in the long-term follow-up of patients with autoimmune encephalitis. By incorporating the patient perspective into medical decision-making, current and future NMDAR encephalitis patients will benefit from the implementation of the diagnostic and treatment guidelines developed in this project for patient-centered post-acut

Designing meaningful surveys: Engaging experts-by-lived experience in the development of a patient-reported experience measure (PREM) of integrated home and community care.

Background: People want to live well in their homes and communities for as long as possible. To support this, some home care services in Ontario, Canada are restructuring to integrate medical and personal care, with community-based social care and services (e.g., friendly visiting, meals, and transportation). Measures of client experience, referred to as ‘patient-reported experience measures’ (PREMs) are important for guiding health system improvements in a way that is meaningful to clients. A current challenge is that existing PREMS are insufficient for measuring client experience of new models of home and community care.&#x0D; Aims: This study engaged clients, family/friend caregivers, and health and social care providers in a participatory process to develop relevant items for a PREM for integrated home and community care. This engagement process aimed to provide opportunities for client feedback to support integrated care and ensure the new PREM will collect data that can inform health system improvements in ways that are most meaningful to clients and caregivers.&#x0D; Methods: Guided by Streiner et al.’s (2015) approach, we engaged experts-by-lived experience in content and face validity testing of an item pool matrix to determine relevance and coverage of domains and items. The matrix consisting of 3 domains, 14 categories, and 72 items was based on a literature review of home and community PREMs (32 PREMs with 550+ items) and interviews with healthcare leader experts (n=6). To conduct content and face validity testing we held three focus groups with home care recipients and family/friend caregivers (n=17) as well as individual interviews with health and social care providers working in home care (n=15). We analyzed transcripts line-by-line to generate themes related to face and content validity of each item. &#x0D; Results: Participants agreed that client experience of innovative home and community care is well captured by three domains: equity, continuity, and life care. They also agreed the corresponding 72 proposed items had face validity. Suggestions to improve content validity included that items be adapted to recognize the role of caregivers; the role of primary providers and/or coordinators in delivering well organized care; and shifting from a focus on self-management to having needed supports to stay in the home, and collaboratively developing care plans. Participants excluded several items due to being vague or not meaningful, such as asking, “my providers understood my needs”. Based on feedback, 22 items were removed from the matrix.&#x0D; Learnings: Engaging experts-by-lived experience in development of PREMs helps ensure the data generated from PREMs will be meaningful and useful for guiding health system improvements that matter to clients. Relying on existing literature and traditional expert opinion alone did not guarantee relevance or coverage of items. &#x0D; Next steps: The feedback from participants will be used to further refine and scale the PREM items. Clients of home care and family/friend caregivers will then be re-engaged in cognitive testing to identify issues related to answering the questions on the scale. Once complete, the PREM will undergo psychometric testing.&#x0D;

How patients define success for integrated care: How the University Health Network identifies iterative improvement priorities

Background: While many standardized surveys exist to measure patient experience, they are not designed to assess unique features of integrated care (IC) programs including transitions from hospital to community, satisfaction with homecare, or resources and supports provided post-discharge. The aim was to have patients lead efforts to develop a set of quality indicators for routine monitoring of patient experience in the University Health Network (UHN) integrated models of care in Toronto, Ontario, Canada. The output would be used to evaluate efforts and prioritize ongoing improvement to continue to meet patient needs.&#x0D; Population: We invited 29 stakeholders to participate in this study between April-July 2022. Twenty-three (79%) were female, 14% identified as a person with a disability, and 28% identified as a person of colour. Nearly half of all participants were patients or caregivers (42%), followed by administration/clinicians (58%).&#x0D; Engagement: This work was carried out in partnership with patients and caregivers. We worked collaboratively with the UHN Patient Experience Team to ensure materials and processes were effectively designed for engagement. &#x0D; Methods: We used the RAND-modified Delphi method, an approach combining scientific literature and expertise of stakeholders, to reach consensus on an agreed-upon set of indicators to measure patient experience. The study consisted of two surveys and a virtual meeting. In survey #1, participants answered demographic questions and rated 45 patient-reported experience measures (PREMs) on whether they felt the indicator was reliable, necessary, and actionable, and also provided written feedback on each. We averaged responses and feedback to rank indicators; those with above-average ratings were included in survey #2 where respondents identified if each indicator should be included as a key performance metric. All results were shared and discussed at the virtual meeting.&#x0D; Results: Among the 29 stakeholders surveyed, 27(93%), 25(86%) participated in survey #1 and #2, respectively. The average rating for indicators in survey #1 was 79%, resulting in 23 indicators proceeding to survey #2. In 71.1% of indicators from survey #1 there was full agreement, meaning that both patients/caregivers and administration/clinicians rated above or below 79% (i.e., there was agreement to keep or remove the indicator). The remaining 29% of indicators had half agreement between patients/caregivers and administration/clinicians. Divergence of opinion mostly occurred for indicators that assessed the patient’s emotional well-being (e.g., addressing anxieties, fears, worries). The final set of indicators covers pre-hospital admission through the post-discharge period and assesses domains such as informational continuity, person-centered care, timeliness of care, effectiveness of resources and supports, and efficacy of knowledge translation.&#x0D; Conclusions: After 2 survey rounds and a virtual meeting participants reached consensus on 13 indicators to measure patient experience. This is the first set of PREMs co-designed by patients and caregivers with a focus on IC applications in Canada. &#x0D; Lessons Learned: Patients and caregivers rated indicators that measure domains of emotional support and reassurance higher than administration/clinicians, highlighting the importance of sub-group analysis in designing patient experience measures. &#x0D; Next Steps: Following a successful pilot in the Division of Orthopedics, these indicators will be implemented in all UHN IC programs.

Think aloud and tell us everything that comes to mind”: Results from cognitive testing of a patient-reported experience measure (PREM) for integrated home and community care.

Background: Ontario’s health system goal is to put clients at the centre with the right care, at the right time, in the right place. To do this there is a need to integrate home care with community-based services. This type of integration should, in theory, better support people to continue living well, with dignity and safety, in their homes and communities for as long as possible. A critical component of improving integrated home and community care is gathering self-reported data of client experience, through patient-reported experience measures (PREMs). When client reported data is integrated into health system improvement initiatives, there is a trend towards better health outcomes, including the adoption of safe practices, better communication, and improved clinical indicators. However, no PREM currently exists to measure client experience of integrated home and community care.&#x0D; Aims: We aimed to engage clients of home care services and family/friend caregivers to clients receiving home care in Ontario, Canada to tells us about the usability of a newly developed PREM for emerging models of integrated home and community care. This engagement should ensure the PREM is easy to comprehend and straightforward, making it more likely to generate reliable and valid information . &#x0D; Methods: We engaged with clients and caregivers (n=10) with diverse gender expressions, racial backgrounds, abilities, and socioeconomic status in one-to-one interviews to identify issues related to answering the questions on our newly developed PREM. Participants were asked to “think aloud and tell us everything that comes to mind, whether it seems important or not” while completing the PREM. This approach elicited information about the clarity of the instructions, their understanding of the questions, the item stem and scale match, and what led them to their answer. We asked additional question related to comprehension of terms, ambiguity, value-laden words, double-barreled questions, positive and negative wording, and length. Two members of the research team conducted thematic analysis of the generated transcripts and came to consensus regarding required changes to the scaling and items.&#x0D; Results: At the time of the conference, the detailed results of the cognitive testing will be available. We anticipate sharing recommendations from users of home care on 1) creating clear scaling options, 2) wording items clearly, 3) the appropriate length of the questions and overall survey, and 4) clarifying jargon or unintended meaning of questions. The finalized draft PREM will be shared.&#x0D; Learnings: Results will provide insight into how to clarify wording and scale a survey about client experience of integrated home and community. This will help to improve survey design and user experience, ultimately enhancing potential for a reliable and valid measure of patient experience. &#x0D; Next steps: The PREM will be adapted and psychometrically tested. If found to be reliable and valid for use in home and community care, it will be rolled out at a home care service provider organization across Canada in late 2023. This PREM data should be integrated with other metrics of the quadruple aim to best guide healthcare improvement.

Effects of remote ear-nose-and-throat specialist assessment screening on self-reported hearing aid benefit and satisfaction

Objective To explore the impact of remote versus in-person ear-nose-and-throat (ENT) specialist screening before hearing treatment on self-reported hearing aid (HA) benefit and satisfaction among adult first-time HA users. Design Participants were randomised to either remote or in-person ENT assessment before treatment initiation. Hearing ability, hearing quality, and treatment satisfaction were assessed pre- and post-HA treatment using the SSQ12, IOI-HA, and selected items from the 2021 Danish national Patient-Reported Experience Measures. Average daily HA usage was also recorded. Study sample 751 adult potential first-time HA users with self-reported hearing impairment were included; 501 participants were remotely assessed in private or public audiological clinics, and 250 control group participants were assessed in-person by private ENT specialists. Of the 658 participants who completed the entire trial, 454 received HAs. Results No significant post-treatment HA benefit differences were found between groups. Remotely assessed HA recipients in private clinics expressed slightly higher staff and waiting time satisfaction. Participants with normal hearing and mild/moderate hearing loss reported higher pre-treatment hearing ability and quality. No significant difference in average daily HA usage was observed between groups. Conclusions Findings suggest that remote screening does not compromise patient-reported HA benefit and satisfaction when compared to in-person screening.

Using patient-reported outcome measures andpatient-reported experience measures to elevate the quality ofhealthcare.

Using patient-reported outcome measures andpatient-reported experience measures to elevate the quality ofhealthcare.

Addressing the need for Indigenous-specific PROMs and PREMS: A focus on methodology.

Differences in Indigenous worldviews, practices and values highlight the need for Indigenous-specific health quality indicators, such as patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). The purpose of this paper is to present our methodology, as part of a larger study that sought to develop a framework for creating Indigenous-specific PROMs and PREMs. The research design was informed by Indigenous research methodology and a community-based participatory approach. It had three core components: (1) a literature exploration of existing Indigenous-specific PROMs and PREMs; (2) interviews with researchers with expertise in PROMs and PREMs developed for Indigenous populations and community leaders interested in using these Indigenous-informed evaluation tools; and (3) conversations with Indigenous community members about their experiences with health surveys. Interviews were audio-recorded and transcribed verbatim; transcripts were analyzed qualitatively using an inductive and deductive approach. Themes and sub-themes were identified to build a framework that honours Indigenous knowledges and ways of knowing. Results were validated with select research participants and the Project Advisory Committee. Findings demonstrate how relationship building is the necessary starting point for engagement when developing survey instruments with Indigenous peoples. Engagement requires respectful collaboration through all stages of the project from determining what questions are asked to how the information will be collected, interpreted, and managed. A relational stance requires responsibility to Indigenous communities and peoples that goes beyond research carried out using a western scientific lens. It means ensuring that the project is beneficial to the community and framing questions based on Indigenous knowledge, worldviews, and community involvement. This study employed a collaborative, participatory qualitative approach to develop a framework for creating PROMs and PREMs with Indigenous peoples. The methods described offer concrete examples of strategies that can be employed to support relationship-building and collaboration when developing Indigenous-specific survey instruments.

AN INTEGRATED TRANSITIONAL CARE INTERVENTION IMPROVES PATIENT-REPORTED OUTCOMES IN OLDER ADULTS WITH STROKE

Abstract The transition between hospital and home is associated with significant challenges resulting in hospital readmissions and poor health outcomes. This study aimed to test, in real-world clinical practice, the effectiveness of a Transitional Care Stroke Intervention (TCSI) compared to usual care on patient-reported outcomes and health and social service use costs in older adults (&amp;gt; 55 years) with stroke and multimorbidity (&amp;gt; 2 chronic conditions). The TCSI was delivered virtually by an interprofessional (IP) team, and included care coordination/system navigation support, phone/video visits, monthly IP team conferences, and an online resource co-designed with patient partners to support self-management and system navigation. The primary outcome was risk of hospital readmission after six-months. Secondary outcomes included physical and mental functioning, stroke self-management, patient experience, and health and social service costs. Ninety participants were enrolled (44 intervention, 46 control); 11 (12%) participants were lost to follow-up, leaving 79 (39 intervention, 40 control). Differences favoring the intervention group were seen in physical functioning (SF-12 PCS mean difference: 5.10; 95% CI: 1.58-8.62, p=0.005), self-management (Southampton Stroke Self-Management Questionnaire mean difference: 6.00; 95% CI: 0.51—11.50, p=0.03), and patient experience (Person-Centred Coordinated Care Experiences Questionnaire mean difference: 2.64, 95% CI: 0.81, 4.47, p=0.005). No significant between-group differences were seen for baseline to six-month risk of hospital readmission or total health and social service costs. The TCSI produced greater gains in patient-reported physical health, self-management and experience compared with usual stroke care. These improvements were achieved without increasing total healthcare costs.

Impact of COVID-19 on patient experience of kidney care: a rapid review.

In March 2020, a pandemic state was declared due to SARS-COV-2 (COVID-19). Patients with kidney disease, especially those on replacement therapies, proved more susceptible to severe infection. This rapid literature review aims to help understand how the pandemic impacted patient experience of kidney care. It was conducted in accordance with Cochrane Rapid Review interim guidance. Search terms, 'coronavirus', 'kidney care', and 'patient-reported experience' and terms with similar semantic meaning, identified 1,117 articles in Medline, Scopus, and Worldwide Science. Seventeen were included in the narrative synthesis. The findings were summarised into three themes: remote consultation and telemedicine (n = 9); psychosocial impact (n = 2); and patient satisfaction and patient-reported experience (n = 6). Patients were mostly satisfied with remote consultations, describing them as convenient and allowing avoidance of hospital visits. Anxieties included missing potentially important clinical findings due to lack of physical examination, poor digital literacy, and technical difficulties. Psychosocial impact differed between treatment modalities-transplant recipients expressing feelings of instability and dread of having to return to dialysis, and generally, were less satisfied, citing reduced ability to work and difficulty accessing medications. Those on home dialysis treatments tended to feel safer. Findings focused on aspects of patient experience of kidney care during the pandemic rather than a holistic view. There was little direct evaluation of modality differences and limited consideration of health inequalities in care experiences. A fuller understanding of these issues would guide policy agendas to support patient experience during future public health crises.