Capturing Patient Experience Research Articles

Patient-focused drug development in primary sclerosing cholangitis: Insights on patient priorities and involvement in clinical trials.

According to the new AASLD Practice Guidance, all patients with primary sclerosing cholangitis (PSC) should be considered for participation in clinical trials. However, PSC's rarity has posed challenges to characterizing patient interest in trial participation and identifying predictors of patient willingness to participate in drug trials. PSC Partners Seeking a Cure developed the "Our Voices" survey to inform the development of the Externally-Led Patient-Focused Drug Development Forum, an FDA initiative to capture patient experiences and perspectives on drug development. Of 797 survey respondents from over 30 countries, 536 (67%) identified slowing disease progression as the most important outcome. Eighty-nine percent identified their hepatologist/gastroenterologist as someone they would approach for advice about trials. Although 61% reported being willing to participate in drug trials, only 26% had ever been asked to participate. Notable barriers to trial involvement included unknown long-term risks (71%), long travel times to the study center (32%), and a liver biopsy requirement (27%). On multivariable logistic regression, pruritus (OR 1.62, 95% CI: 1.09-2.40, p = 0.017) was positively associated with willingness to participate in disease-modifying therapy trials, while jaundice (OR 0.34, 95% CI: 0.19-0.61, p < 0.001) and inflammatory bowel disease (OR 0.64, 95% CI: 0.42-0.98, p = 0.038) were negatively associated. Pruritus (OR 2.25, 95% CI: 1.50-3.39, p < 0.001) was also independently associated with willingness to participate in symptom treatment trials. Most patients with PSC report interest in participating in clinical trials, but few have been asked to participate. Referral of patients with PSC by their hepatologist/gastroenterologist to clinical trials and patient education on trial participation are vital to closing the gap between trial interest and participation. Pruritus may serve as a key indicator of patient interest in trial participation.

Impact of omitting annual reviews for COPD on patient reported care quality– outcomes from the Asthma+Lung COPD patient passport

BackgroundRegular clinical reviews of people with COPD provide an opportunity to optimise management and are recommended in national and international guidelines. However, there are limited data about the relationship between...

Lessons from the COVID-19 pandemic in paediatric post-discharge care

The COVID-19 pandemic dictated rapid reform in outpatient paediatric services. To reduce ward footfall and its associated infection risk, a trainee-led outpatient clinic was established with the aim to provide...

Development and Testing of a Chronic-Disease Patient Experience Mapping Toolbox.

Stakeholders increasingly expect research and care delivery to be guided by and to optimize patient experiences. However, standardized tools to engage patients to gather high-quality data about their experiences, priorities, and desired outcomes are not publicly available. The objective of this study was to develop and test a Toolbox with a disease-agnostic interview guide template and accompanying resources to assist researchers in engaging patients living with chronic disease in a dialogue about their experiences. Guided by a multidisciplinary workgroup, a targeted literature review (PubMed) was conducted, followed by group discussions to identify/thematically organize patient experience concepts, development of a conceptual model, and drafting of an interview guide template and patient-facing visual. Materials were tested/refined via cognitive (n = 5) and pilot (n = 30) interviews conducted virtually with US patients diagnosed with chronic/potentially disabling conditions from December 2020 to April 2021. Patient-facing tools were reviewed by health literacy experts for applicability/accessibility. English-speaking adults who self-reported receiving a chronic condition diagnosis at least 6 months prior participated in a 60-90 min interview. Patient experience concepts were organized thematically under three domains: (1) life before a diagnosis, (2) experiences getting a diagnosis, and (3) experiences living with a diagnosis. A plain language consent sheet template, interview guide template, and patient experience conceptual model were developed and revised based on input from interviewees, interviewers, and the workgroup. A disease-agnostic patient-engagement Toolbox was developed and tested to capture patient experience data. These materials can be customized based on study objectives and leveraged by various stakeholders to identify opportunities to enhance the patient centricity of healthcare delivery and research.

Capturing patient experiences of care with digital technology to improve service delivery and quality of care: A scoping review.

Patient experience significantly impacts healthcare quality, outcomes, resource utilisation and treatment adherence. Digital technologies offer promising approaches for capturing real-time, multi-faceted patient experiences. This scoping review investigated how digital technologies are used to capture patient experience during healthcare encounters and their potential to improve health service delivery and care. A scoping review was conducted to determine associations between patients' use of digital technology and subsequent outcomes. Four electronic databases were searched using six combination search terms in titles and/or abstracts published between 2016 and 2022. Inclusion criteria focused on studies where patients were primary users of digital technology, reporting on their experience during care. Studies had to report on at least one outcome: health service delivery, quality of care or patient experience. Screening, data extraction and analysis were performed systematically. Of the 377 studies retrieved, 20 were included. Most studies incorporated aspects allowing patients to share experiences with digital technologies. Eighty percent (n = 16) of studies reported improvements in patient experiences, 75% (n = 15) enhancements in service delivery aspects and 50% (n = 10) indicated improved quality of care associated with the use of digital technologies. Real-time journaling and narrative methods alongside treatment were linked to improved communication, healthcare efficiencies and patient agency. Technologies facilitating bidirectional communication were particularly associated with positive effects on patients' sense of agency. Digital technologies facilitating documentation of patient experiences demonstrate potential in enhancing care quality through increased patient voice, collaboration and agency. Technologies designed to map and evaluate patients' healthcare experiences represent a promising approach to improving healthcare outcomes, service delivery and overall patient experience. Further research is needed to establish standardised methodologies and evaluate long-term impacts across diverse populations. Integrating digital narrative medicine principles may offer valuable insights for future interventions aimed at capturing and enhancing patient experiences in healthcare.

Comparing patient-reported outcomes of the Oxford Ankle and Foot Questionnaire in children with clubfoot from two different geographic and cultural environments: a cohort study in India and Canada.

The purpose of this study is to compare the results of the Oxford Ankle and Foot Questionnaire (OxAFQ) in children with clubfoot in Canada and India to assess its ability to predict outcomes and capture patient experiences in different cultural contexts. This is a retrospective study of children with clubfoot in India and Canada who completed the OxAFQ. Statistical analyses were implemented on registry-collected data to test for independent predictors of poor outcomes and compare scores between countries, among children and their parents, and in Canada where relapse data was collected and the effect of a relapse on scores. A total of 361 children were included. The mean Indian OxAFQ scores were higher (p < 0.001) in all domains. Pirani score, tenotomy, laterality, and age at presentation were found to be predictive of outcomes between the sites (p < 0.05). OxAFQ scores decreased after relapse for children in Canada (p < 0.05). Canadian children were found to generally have lower OxAFQ scores in all domains compared to their parents (n = 95; Z = -3.178, -3.493, -3.353, and -3.635 for physical, school and play, emotion, and footwear, respectively; p < 0.001). Indian parents and children showed no significant differences in their scores. A difference was observed in scores between both sites, suggesting there may be differences in how these populations assess personal health outcomes. These findings support the need for cultural validity of patient-reported outcome measures.

Surveying Patients' Experiences and Perspectives on Venous Thromboembolism Care: An International Study to Identify Gaps and Opportunities in Health Care Delivery

Background Patient experience is a well-recognized, independent dimension of health care delivery. Although considerable progress has been made in the diagnosis and management of venous thromboembolism (VTE), data on the patient experience are lacking. We aimed to capture patients' experiences with VTE and anticoagulation in order to prioritize efforts to improve VTE health care delivery. Methods An IRB-approved survey was developed with a multidisciplinary team of clinicians and patient advocates. The survey domains included patient demographics, health care experiences, perspectives, and potential gaps in healthcare received for VTE. The survey was pilot tested and subsequently distributed electronically from May-July 2023 through an international patient advocacy group targeting individuals with personal history of VTE. Data are described as counts and proportions. We used log binomial regression to calculate the risk ratios (RR) and 95% confidence intervals (CI) of outcomes associated with seeing a hematologist during or after hospital admission. Results Of a total of 1,050 participants, the majority were from the US (81%), including 49 states and the District of Columbia. A response rate could not be calculated given that the web-based survey was openly distributed. The majority of respondents were women (81%), 88% identified as white, and 71% were age 40-69 years. Most patients (68%) experienced their first VTE event &amp;gt;12 months prior to the study, 36% had &amp;gt;1 VTE events and the majority (62%) were diagnosed in the emergency department. Over one-third (35%) of respondents reported not receiving the correct diagnosis the first time they presented to medical care and 50% of these participants had at least 3 health care visits before reaching the correct diagnosis. The majority (93%) recall information regarding their VTE diagnosis was provided by physicians or advanced practitioners, 65% reported this conversation was &amp;lt;10 minutes, and only 55% felt the diagnosis was explained to their satisfaction. (Table) A minority (16%) of patients received printed or electronic information at the time of diagnosis. Almost all (97%) participants were treated with anticoagulation, but only 48% recalled being provided specific information about the medication including risks and benefits. Only 24% of 563 respondents who menstruate recall discussing the impact of anticoagulation on menstruation with providers, and all recalled discussing this only after they developed anemia or changes in their menstrual flow. Of the 105 participants who were offered the opportunity to speak with a health care advocate, most (73%) accepted it; of those not offered an advocate, 88% reported that they would have accepted the opportunity. Only 53% of respondents reported access to providers for questions regarding their VTE diagnosis. Of 702 patients who were admitted to the hospital for VTE, 32% reported returning to health care, as their symptoms did not improve or worsened, and 30% of these patients were readmitted. Most admitted patients (89%) reported receiving some information about VTE at discharge, but the information received did not match the topics patients wanted. For example, patients most frequently wanted information about support groups (65%), mental health (65%), recurrence risk (55%) and prevention strategies (49%), but few received this information (2%, 2%, 17%, and 33%, respectively (Figure). Most patients were seen by hematologists following discharge (59%) or during hospitalization (35%). Among admitted patients, those who saw a hematologist either during or after admission were significantly more likely to receive information about their VTE (RR: 1.15, 95% CI: 1.06-1.24) and about anticoagulation (RR: 1.23, 95% CI: 1.04-1.45) at discharge compared to patients who did not see a hematologist. Conclusion In this first large-scale international survey to capture patient experiences and gaps in VTE care delivery, we identified several potential areas for improvement. Efforts to enhance patient education could improve the patient experience. Further research could explore if better education translates to improved medication adherence, management of bleeding, avoiding polypharmacy, and ultimately clinical outcomes. Professional societies and patient advocacy groups can partner to build resources to improve the quality of care and patient satisfaction for people with VTE.

Capturing patient experience.

Patient experience is a crucial measure of the quality of patient care in healthcare settings. It encompasses all the patient's interactions with staff and their exposure to equipment, procedures, environment and service structure during one care episode. Capturing patient experience is one way of ensuring that patients' voices are heard and can form the basis of an audit or service improvement project designed to evaluate or enhance the patient-centredness of care. Nurses are increasingly involved in audits and service improvement projects, so it is important that they understand what patient experience is, how it differs from patient satisfaction and what approaches can be used to measure it. This article defines patient experience, describes data collection methods and discusses factors to consider when planning to collect patient experience data, notably the validity, reliability and rigour of the data collection tool.

Evaluation of an Innovative Colon Capsule Endoscopy Service in Scotland From the Perspective of Patients: Mixed Methods Study.

Colonoscopy is the gold standard for lower gastrointestinal diagnostics. The procedure is invasive, and its demand is high, resulting in long waiting times. Colon capsule endoscopy (CCE) is a procedure that uses a video capsule to investigate the colon, meaning that it can be carried out in a person's own home. This type of "hospital-at-home" service could potentially reduce costs and waiting times, and increase patient satisfaction. Little is currently understood, however, about how CCE is actually experienced and accepted by patients. The aim of this study was to capture and report patient experiences of the CCE technology (the capsule and associated belt and recorder) and of the new clinical pathway for the CCE service being rolled out as part of routine service in Scotland. This was a mixed methods service evaluation of patient experiences of a real-world, deployed, managed service for CCE in Scotland. Two hundred and nine patients provided feedback via a survey about their experiences of the CCE service. Eighteen of these patients took part in a further telephone interview to capture more in-depth lived experiences to understand the barriers and opportunities for the further adoption and scaling up of the CCE service in a way that supports the patient experience and journey. Patients overall perceived the CCE service to be of significant value (eg, mentioning reduced travel times, reduced waiting times, and freedom to complete the procedure at home as perceived benefits). Our findings also highlighted the importance of clear and accessible information (eg, what to expect and how to undertake the bowel preparation) and the need for managing expectations of patients (eg, being clear about when results will be received and what happens if a further colonoscopy is required). The findings led to recommendations for future implementations of managed CCE services in National Health Service (NHS) Scotland that could also apply more widely (United Kingdom and beyond) and at a greater scale (with more patients in more contexts). These include promoting CCE with, for, and among clinical teams to ensure adoption and success; capturing and understanding reasons why patients do and do not opt for CCE; providing clear information in a variety of appropriate ways to patients (eg, around the importance of bowel preparation instructions); improving the bowel preparation (this is not specific to CCE alone); providing flexible options for issuing and returning the kit (eg, dropping off at a pharmacy); and embedding formative evaluation within the service itself (eg, capturing patient-reported experiences via surveys in the information pack when the equipment is returned).

Building from Patient Experiences to Deliver Patient-Focused Healthcare Systems in Collaboration with Patients: A Call to Action

Patients’ experiences of their diagnosis, condition, and treatment (including the impact on their lives), and their experiences surrounding expectations of care, are becoming increasingly important in shaping healthcare systems that meet the evolving needs and priorities of different patient communities over time; this is an ongoing goal of all healthcare stakeholders. Current approaches that capture patient experiences with data are fragmented, resulting in duplication of effort, numerous requests for information, and increased patient burden. Application of patient experience data to inform healthcare decisions is still emerging and there remains an opportunity to align diverse stakeholders on the value of these data to strengthen healthcare systems. Given the collective value of understanding patient experiences across multiple stakeholder groups, we propose a more aligned approach to the collection of patient experience data. This approach is built on the principle that the patients’ experiences are the starting point, and not just something to be considered at the end of the process. It must also be based on meaningful patient engagement, where patients are collaborators and decision makers at each step, thereby ensuring their needs and priorities are accurately reflected. The resulting data and evidence should be made available for all stakeholders, to inform their decision making and healthcare strategies in ways that meet patient priorities. We call for multi-stakeholder collaboration that will deliver healthcare systems and interventions that are better centered around and tailored to patient experiences, and that will help address patients’ unmet needs.

Initial experience and validation of a novel tool to assess patient experience in the catheterization laboratory (PATCATH), in patients undergoing coronary angiography or angioplasty.

Abstract Funding Acknowledgements Type of funding sources: None. Background Patient-reported experience metric (PREM) questionnaires are an important tool for evaluating patient experience. Purpose Validated PREM tools may help to identify areas of quality improvement within healthcare. Methods A novel tool developed by the Patient Initiative Committee of the European Association of Percutaneous Intervention (EAPCI), in association with the European Society of Cardiology Patient Forum was designed to capture patient experience in the catherization laboratory. The questionnaire is divided into 3 domains assessing experience before, during and after coronary angiography or angioplasty (Figure 1, Panels A-C). Responses were recorded on a scale of strongly agree, agree, disagree, or strongly disagree. Consecutive patients undergoing a coronary angiography or angioplasty received the questionnaire to complete anonymously during recovery following catheterization. Results A total of 100 valid responses were received over a four week pilot experience. Most patients had an angiogram procedure (80%). A total of 52% were grouped in the higher age category (≥66 years) (Table 1). Patient response indicated a high level of satisfaction with the experience before the procedure: 98.6% of patients strongly agreed or agreed with statements assessing positive experience reflecting a level of knowledge of why the procedure was recommended and perceived level of support (Figure 1, Panel A). 98.5% strongly agreed or agreed with statements assessing positive experience of comfort, safety, communication and understanding during the procedure (Figure 1, Panel B). A total of 9.6% of patients within the higher age category provided no response regarding their understanding for why a treatment decision was made, whilst all patients in the lower age category responded. After the procedure, 59.3% strongly agreed or agreed with statements assessing positive experience: with lower levels of positive experience for questions related to lifestyle changes (60%), comprehension of a rehabilitation program (46%), medication prescription (58%) and treatment duration (53%) (Figure 1, Panel C). However, 15.2% of questions in this domain had no response, particularly those related to prescribed medication. A lower positive experience was observed between higher versus lower age categories respectively (44.2% &amp; 77.1%) regarding an understanding of necessary lifestyle changes. Conclusion The results of our initial experience with a novel PREMs tool highlight high levels of positive experience before and after diagnostic angiography and a lower level of positive experience in the period after the procedure. Completing this tool at a later stage or post-hospital discharge (i.e., following additional education interventions) may help to capture a higher positive response related to after the intervention. To validate these findings, this PREM tool should be evaluated further in additional patient cohorts across multiple sites.

ID:15990 Predicting Pain Now and in the Future Through Personalized Physiologic Mobility Metrics

Objectively detecting and grading pain, particularly chronic pain, has remained an elusive goal This is in part due to its subjective and multivariate nature, and the inherent limitations in measuring and understanding pain experience at the individual level Currently, patient self reported scales of pain intensity (VAS/NRS/ serve as gold standard measures in pain management, despite known inaccuracies and bias of reporting in these measures Novel objective metrics are needed to better capture patient experience, avoid bias, and improve repeatability in order to inform physicians and patients of treatment options These metrics need to describe physiology, capture the range of changes during treatment, and ideally be suited to predicting future changes so that interventions can be taken

Understanding the patient experience of chronic kidney disease stages 2–3b: a qualitative interview study with Kidney Disease Quality of Life (KDQOL-36) debrief

BackgroundQualitative patient interviews and patient-reported outcome instruments are important tools to understand the patient experience of disease. The aim of this study was to use patient interviews to identify concepts relevant and important to patients living with chronic kidney disease (CKD) stages 2–3b, develop a comprehensive conceptual model of the patient experience and debrief the Kidney Disease Quality of Life 36-item instrument (KDQOL-36) for patients with CKD stages 2–3b.MethodsConcept elicitation interviews were conducted with patients with CKD stages 2–3b to identify signs/symptoms and impacts most relevant and important to patients (i.e., ‘salient’ concepts) and develop a conceptual model for the disease. Based on the salient concepts identified in the interviews, new items were proposed to supplement the KDQOL-36. Cognitive debriefing was performed to evaluate the KDQOL-36 and the additional items.ResultsA total of 31 patients were interviewed in this study (22 for concept elicitation and 15 for cognitive debriefing). The interviews identified 56 concepts (33 signs/symptoms and 23 impacts), 17 of which had not been identified in a previous literature review. Four signs/symptoms (‘fatigue/lack of energy/tiredness’, ‘sleep problems’, ‘increased urination [including nocturia]’ and ‘swelling in legs/ankles/feet’) and two impacts (‘anxiety/worry’ and ‘general negative emotional/mental impact’) were identified as salient. Of the salient signs/symptoms, three were not covered by the KDQOL-36 (sleep problems, increased urination and swelling in legs/ankles/feet) and were represented during cognitive debriefing interviews through four additional items (trouble falling asleep, trouble staying asleep, increased urination [including nocturia] and swelling in legs/ankles/feet) generated in the style of the KDQOL-36. All patients found the KDQOL-36 plus the four additional items relevant, and the majority found them clear.ConclusionsBy identifying previously unknown concepts and augmenting the understanding of which are most important to patients, a comprehensive conceptual model was developed for patients who have CKD stages 2–3b. This study also demonstrates the suitability of the KDQOL-36 for patients who have CKD stages 2–3b and provides suggestions for how the instrument could be further developed to more comprehensively capture patient experience.

Challenges and Feasibility of Co-Design Methods for Improving Parent Information in Maternity Care

This study explored the feasibility of using experience-based co-design methods (EBCD), based on participatory action principles, to improve service delivery regarding parent information needs within a metropolitan postnatal maternity unit. Data were collected from January 2018 to March 2019 from parents and staff using surveys, video interviews, a focus group and ward observations of episodes where parents were provided information. Participants included postnatal mothers who had recently given birth, their partners and hospital staff. Survey results (n = 31) were positive regarding content and satisfaction with information delivery. Data from the staff focus group (seven participants) and in-depth video interviews with mothers (n = 4) identified common themes, including challenges to information delivery due to time pressures, the value of breastfeeding advice and environmental influences. Overall, parents were satisfied with the information delivered; however, inconsistencies were present, with time pressures and other environmental factors reported as influencing the process. Staff and parents both identified the amount of content being delivered in such a short time frame as a major challenge and tailoring information was difficult due to individual experiences and circumstances. Additional resources or alternative methods are suggested for conducting future studies to capture patient experience within a similar busy hospital setting.

Closing the Loop With Cortical Sensing: The Development of Adaptive Deep Brain Stimulation for Essential Tremor Using the Activa PC+S.

Deep Brain Stimulation (DBS) is an important tool in the treatment of pharmacologically resistant neurological movement disorders such as essential tremor (ET) and Parkinson's disease (PD). However, the open-loop design of current systems may be holding back the true potential of invasive neuromodulation. In the last decade we have seen an explosion of activity in the use of feedback to “close the loop” on neuromodulation in the form of adaptive DBS (aDBS) systems that can respond to the patient's therapeutic needs. In this paper we summarize the accomplishments of a 5-year study at the University of Washington in the use of neural feedback from an electrocorticography strip placed over the sensorimotor cortex. We document our progress from an initial proof of hardware all the way to a fully implanted adaptive stimulation system that leverages machine-learning approaches to simplify the programming process. In certain cases, our systems out-performed current open-loop approaches in both power consumption and symptom suppression. Throughout this effort, we collaborated with neuroethicists to capture patient experiences and take them into account whilst developing ethical aDBS approaches. Based on our results we identify several key areas for future work. “Graded” aDBS will allow the system to smoothly tune the stimulation level to symptom severity, and frequent automatic calibration of the algorithm will allow aDBS to adapt to the time-varying dynamics of the disease without additional input from a clinician. Additionally, robust computational models of the pathophysiology of ET will allow stimulation to be optimized to the nuances of an individual patient's symptoms. We also outline the unique advantages of using cortical electrodes for control and the remaining hardware limitations that need to be overcome to facilitate further development in this field. Over the course of this study we have verified the potential of fully-implanted, cortically driven aDBS as a feasibly translatable treatment for pharmacologically resistant ET.

Identifying factors that promote and limit the effective use of real-time patient experience feedback: a mixed-methods study in secondary care

ObjectivesThe Friends and Family Test (FFT) is commissioned by the National Health Service (NHS) in England to capture patient experience as a real-time feedback initiative for patient-centred quality improvement (QI)....

Patient-Reported Outcomes following Genetic Testing for Familial Hypercholesterolemia, Breast and Ovarian Cancer Syndrome, and Lynch Syndrome: A Systematic Review.

Background: Patient-reported outcomes (PROs) and PRO measures (PROMs) are real-world evidence that can help capture patient experiences and perspectives regarding a clinical intervention such as genetic testing. Objective: To identify and capture methods and qualitative PRO themes among studies reporting PROs following genetic testing for FH, breast and ovarian cancer syndrome, and Lynch syndrome. Methods: A systematic review was conducted via PubMed/MEDLINE, EMBASE, and Yale University’s TRIP Medical Databases on articles published by April 2021. Results: We identified 24 studies published between 1996 and 2021 representing 4279 participants that reported PROs following genetic testing for FH, breast and ovarian cancer syndrome, and Lynch syndrome. Studies collected and reported PROs from validated PROM instruments (n = 12; 50%), validated surveys (n = 7; 26%), and interviews (n = 10; 42%). PRO themes ranged across all collection methods (e.g., psychological, knowledge, coping and satisfaction, concern about stigma/discrimination, etc.). Conclusions: Important gaps identified include (1) most studies (n = 18; 75%) reported PROs following genetic testing for breast and ovarian cancer, and (2) populations reporting PROs overall were largely of White/Caucasian/Northern European/Anglo-Saxon descent. We offer recommendations and describe real-world implications for the field moving forward.

Proposal for capturing patient experience through extended value frameworks of health technologies.

BACKGROUND: Inclusion of patient experience (PEx) in health technology assessment (HTA) has become increasingly important; however, no harmonized approach exists to help manufacturers or decision makers ensure PEx considerations are fair, consistent, and thorough within global HTA frameworks. OBJECTIVE: To develop a proposal for including PEx in the HTA frameworks of health technologies. METHODS: A systematic literature review (SLR) on existing value frameworks (VFs) was conducted to capture how PEx-related value judgment is currently considered. Guided by the results of the SLR, a research group including HTA experts and patient representatives used an iterative process to develop potential value domains to capture PEx, in accordance with international guidelines. Subsequently, a panel of international payer experts was used to challenge the proposed PEx domains and provide recommendations for implementation. RESULTS: The SLR found 61 VFs and multi-criteria decision analyses (MCDAs) that considered PEx; however, PEx-related value elements were often referred to superficially, without clear definitions. Five potential PEx domains, with proposed measures for each, were developed and refined using expert feedback: (1) responsiveness to patient's individual needs, (2) improved health literacy and empowerment, (3) patient and caregiver reported outcomes, (4) household's financial burden, and (5) improved access for vulnerable patient populations. A flexible approach for framework implementation was proposed. CONCLUSIONS: Proposed PEx domains could be implemented at multiple levels of healthcare decision making to formalize consideration of PEx in the assessment of value, either through the extension of existing VFs or to create new PEx-focused VFs and more holistic decision making tools. DISCLOSURES: This study was funded and sponsored by UCB Pharma. The funding agreement ensured the authors' independence in designing the study, interpreting the data, writing, and publishing the report. Charokopou, Mountain, and Szegvari are employed by UCB Pharma. Inotai, Jakab, and Kalo are employed by Syreon Research Institute, which received funding from UCB Pharma for this research. Brixner has received fees from AbbVie, Elevar, Millcreek Outcomes Group, Novartis, Sanofi, UCB Pharma, and Xcenda. Campbell has received grants and contracts from the PhRMA Foundation and the Institute for Clinical and Economic Review. During a sabbatical leave, Campbell collaborated with Syreon Research Institute on research projects that included funding from UCB Pharma. Hawkins has received consultancy fees from UCB Pharma. Kristensen has received speakers bureau fees from Pfizer, AbbVie, Amgen, UCB Pharma, Celgene, Bristol-Myers Squibb, MSD, Novartis, Eli Lilly, and Janssen Pharmaceuticals and consultancy fees from UCB Pharma.

Methods for capturing patient experience and satisfaction in healthcare services.

Patient experience in healthcare has long been recognised in the UK and internationally as a crucial benchmark for assessing quality of care in healthcare settings. It is increasingly becoming part of a nurse's role to conduct, analyse and present the findings of patient satisfaction audits and research projects, and to implement changes to services based on the data collected. To undertake these audits and projects effectively, nurses require knowledge of how to use various data collection methods and research tools, determine their validity and reliability, and minimise bias. This article provides information about these areas, with the aim of assisting nurses in designing and implementing patient satisfaction audits and research projects in their clinical area, which can subsequently be used to improve patient experience.

Why Measure Patient Experience in Physical Therapy?

BackgroundPatient experience is an important component of quality and patient centered health care not fully explored in physical therapy.Main bodyThis article addresses (1) concept of patient experience, (2) importance of capturing the patient experience, (3) measures to capture patient experience and whether these measures exhibit psychometrically sound measurement properties, (4) relationship between patient experience and clinical effectiveness outcomes, and (5) clinical applications of patient experience measures in the outpatient physical therapy setting, including suggestions for future studies.Short conclusionEmploying patient experience measures into physical therapy practice may be an important key to improve clinical effectiveness outcomes and provide excellent patient-centered care delivery. An area of continued research should be focused on demonstrating the generalizability and measurement properties of patient reported experience measures for the musculoskeletal outpatient physical therapy population focusing first on the most common musculoskeletal conditions such as cervical, low back, and shoulder pain.