Patient-reported Measures Research Articles

Sexual Health Among Young Adults Treated with Chimeric Antigen Receptor T Cell Therapy: A Mixed-Methods Study.

Purpose: Chimeric antigen receptor T cell therapy (CAR-T) is a breakthrough treatment for hematological malignancies, but sexual health, crucial for quality of life among young adults (YAs) ages 18-39, remains unexplored among YA CAR-T recipients. This study explored sexual health and patient-provider sexual health communication among YAs post-CAR-T. Methods: This cross-sectional mixed-methods study recruited YAs ≤5 years post-CAR-T. Participants completed Patient-Reported Outcomes Measurement Information System measures assessing sexual health and study-specific items assessing patient-provider sexual health communication. A subset completed a semistructured interview exploring the impact of CAR-T on sexual health and patient-provider sexual health communication. Descriptive statistics compared quantitative data to evidence-based thresholds. Qualitative data were thematically analyzed. Results: Fourteen YAs participated; 11 completed interviews. Median age was 33 years (range: 22-39), 64.3% were male, 92.9% were heterosexual, and median time post-CAR-T was 22 months. Interest in sexual activity was low among females (mean [M] = 35.1, standard deviation [SD] = 10.0), and orgasm ability was low among males (M = 39.3, SD = 19.5). Females reported less interest in sexual activity than males. Most YAs had not (50.0%) or did not recall (35.7%) discussing sexual health with a provider pre-CAR-T. Most (78.6%) had not discussed sexual health with a provider post-CAR-T. Three higher level qualitative themes emerged as follows: (1) treatment negatively affected libido, sexual activity, and romantic relationships, (2) YAs face challenges communicating with health care providers about sexual health, and (3) there is limited sexual health education and support for YAs. Conclusion: Findings highlight a need for improved patient-provider communication about sexual health and educational resources for YA CAR-T recipients.

Management of COVID-19 in the community using virtual care: An Australian perspective.

Virtual care and remote monitoring were widely used during the COVID-19 pandemic. However, early evaluations of effectiveness were often inconclusive due to low rates of enrolment and limited data. The aim of this study was to evaluate the effectiveness of virtual care in managing individuals in community-based self-isolation and quarantine in Australia during this pandemic. A retrospective cross-sectional study was conducted of individuals admitted to a virtual hospital in Sydney who either tested positive for COVID-19 and required self-isolation, or tested negative but still needed to self-isolate, amidst the Delta wave of the COVID-19 pandemic. Outcome measures included health service utilisation, in-hospital mortality, patient-reported experience measures (PREM), and cost savings resulting from avoided emergency department (ED) presentations. Out of 9571 individuals admitted, 8544 (89.3%) had COVID-19. Clinical deterioration or acute illness occurred in 2477 (25.9%) individuals, of whom 890 (9.3%) were referred to ED for further assessment or investigation, and 614 (6.4%) were admitted for inpatient treatment. Overall mortality was 0.2%. Out of 1020 individuals who completed the PREM survey, 846 (82.9%) rated the overall virtual care experience as 'good' or 'very good'. Avoided ED presentations possibly resulted in cost savings estimated between AU$691,214 and AU$2,994,540. Virtual care was successfully used to manage a large number of individuals in community-based self-isolation and quarantine during the COVID-19 pandemic. Scalable pathways for triage, monitoring and clinical escalation via telehealth ensured patient safety and acceptability, and alleviated strain on the broader health system.

Weight-based disparities in perinatal care: quantitative findings of respect, autonomy, mistreatment, and body mass index in a national Canadian survey

BackgroundQualitative studies document episodes of weight-related disrespectful care, particularly for people with high body mass index (BMI ≥ 30) and reveal implicit and explicit biases in health care providers. No large quantitative studies document the pervasiveness of weight stigma or if experiences change with increasing BMI.MethodsThe multi-stakeholder RESPCCT study team designed and distributed a cross-sectional survey on the experiences of perinatal services in all provinces and territories in Canada. From July 2020 to August 2021, participants who had a pregnancy within ten years responded to closed and open-ended questions. Chi square analysis assessed differences in mean scores derived from three patient-reported experience measures of autonomy (MADM), respect (MOR), and mistreatment (MIST). Controlling for socio-demographic factors, multivariate logistic regression analysis explored relationships between different BMI categories and respectful care.ResultsOf 4,815 Canadians who participated, 3,280 with a BMI of ≥ 18.5 completed all the questions. Pre-pregnancy BMI was significantly associated with race/ethnicity, income sufficiency, and education but not with age. Individuals with higher BMIs were more likely to experience income insufficiency, have lower levels of education, and more frequently self-identified as Indigenous or White. Those with BMI ≥ 35 exhibited notably higher odds of reduced autonomy (MADM) scores, with an unadjusted odds ratio of 1.62 and an adjusted odds ratio of 1.45 compared to individuals with a normal weight. Individuals with BMIs of 25–25.9, 30–34.9, and ≥ 35 exhibited odds of falling into the lower tercile of respect (MOR) scores of 1.34, 1.51, and 2.04, respectively (p < .01). The odds of reporting higher rates of mistreatment (top 33% MIST scores) increased as BMI increased.ConclusionsWhile socio-demographic factors like race and income play significant roles in influencing perinatal care experiences, BMI remains a critical determinant even after accounting for these variables. This study reveals pronounced disparities in the provision of respectful perinatal care to pregnant individuals with higher BMIs in Canada. Data suggest that those with higher BMIs face disrespect, discrimination, and mistreatment. Identification of implicit and explicit weight bias may give providers insight enabling them to provide more respectful care.

Collecting Real-Time Patient-Reported Outcome Data During Latent Labor: Feasibility Study of the MyCap Mobile App in Prospective Person-Centered Research.

The growing emphasis on patient experience in medical research has increased the focus on patient-reported outcomes and symptom measures. However, patient-reported outcomes data are subject to recall bias, limiting reliability. Patient-reported data are most valid when reported by patients in real time; however, this type of data is difficult to collect from patients experiencing acute health events such as labor. Mobile technologies such as the MyCap app, integrated with the REDCap (Research Electronic Data Capture) platform, have emerged as tools for collecting patient-generated health data in real time offering potential improvements in data quality and relevance. This study aimed to evaluate the feasibility of using MyCap for real-time, patient-reported data collection during latent labor. The objective was to assess the usability of MyCap in characterizing patient experiences during this acute health event and to identify any challenges in data collection that could inform future research. In this descriptive cohort study, we quantified and characterized data collected prospectively through MyCap and the extent to which participants engaged with the app as a research tool for collecting patient-reported data in real time. Longitudinal quantitative and qualitative surveys were sent to (N=18) enrolled patients with term pregnancies planning vaginal birth at Oregon Health Sciences University. Participants were trained in app use prenatally. Then participants were invited to initiate the research survey on their personal smartphone via MyCap when they experienced labor symptoms and were asked to return to MyCap every 3 hours to provide additional longitudinal symptom data. Out of 18 enrolled participants, 17 completed the study. During latent labor, 13 (76.5%) participants (all those who labored at home and two-thirds of those who were induced) recorded at least 1 symptom report during latent labor. A total of 191 quantitative symptom reports (mean of 10 per participant) were recorded. The most commonly reported symptoms were fatigue, contractions, and pain, with nausea and diarrhea being less frequent but more intense. Four participants recorded qualitative data during labor and 14 responded to qualitative prompts in the postpartum period. The study demonstrated that MyCap could effectively capture real-time patient-reported data during latent labor, although qualitative data collection during active symptoms was less robust. MyCap is a feasible tool for collecting prospective data on patient-reported symptoms during latent labor. Participants engaged actively with quantitative symptom reporting, though qualitative data collection was more challenging. The use of MyCap appears to reduce recall bias and facilitate more accurate data collection for patient-reported symptoms during acute health events outside of health care settings. Future research should explore strategies to enhance qualitative data collection and assess the tool's usability across more diverse populations and disease states.

Feasibility and acceptability of the brief patient-reported experience measure consideRATE within the hospital setting for patients with palliative care needs, their families/carers and clinicians.

Supporting clinical teams to improve care for inpatients with palliative care needs and their carers is a known priority. Patient reported experience measures (PREMs) may assist in improvement work. Evidence about how to collect and feedback PREM data for this population and context is required. To determine the feasibility of implementing a brief, validated PREM, consideRATE and appraise its acceptability as perceived by inpatients with palliative care needs, their carers and clinicians. A prospective study using: 1) PREM administration, screening log and field note completion; and; 2) a focus group with clinicians. Eligible participants recruited from three wards (cancer care and internal medicine) of an Australian tertiary metropolitan hospital. Participants included patients screened to have palliative care needs (using the SPICTTM criteria), their carers and multidisciplinary clinicians (including clinical managers). Feasibility: A 71% response rate was achieved (n = 80 from 112 eligible patients approached). Mean screening time to inform eligible patients for PREM completion was 7.5 min. More than half of eligible participants (n = 47, 59%) opted for electronic completion of consideRATE and mean completion time was 6.12 min. A third of participants required assistance for PREM completion (n = 27, 34%). Score distribution varied across response options, albeit with a positive skew towards 'very good' and 'good'. Two thirds of respondents (n = 50, 62.5%) provided ⩾1 free-text response. Acceptability: Clinicians valued consideRATE data noting feedback needed to be: accessible, supported by free-text and responsive to local contexts. It is feasible to implement consideRATE for inpatients with palliative care needs. Clinicians note consideRATE data is acceptable in informing improvement foci.

Intra- and post-procedural patient-reported experience measures and their correlation with post-ERCP adverse events and unplanned healthcare utilization.

Post-endoscopic retrograde cholangiopancreatography (ERCP) adverse events (AEs) are common, as is unplanned healthcare utilization (UHU). We aimed to assess potential etiologic associations between intra-/post-procedural patient-reported experience measures (PREMs) and post-ERCP AEs and UHU. METHODS : Prospective data from a multicenter collaborative were used. A 0-10 Likert-based PREM assessing intra- and post-procedural symptoms was applied to patients following ERCP, and follow-up was performed at 30 days to identify AEs and UHU for reasons not meeting the definitions of any AE. Multivariable logistic regression was conducted using PREM domains as exposures and AEs and UHU as outcomes, with a priori selected covariates. Odds ratios (ORs) and 95 %CIs for each PREM domain were reported. From 2018 to 2023, 3434 patients were included. A post-procedural abdominal pain score > 3 was associated with pancreatitis (OR 3.71 [95 %CI 2.37-5.73]), while a score > 6 was associated with perforation (OR 9.54 [95 %CI 1.10-59.37]). Post-procedural pain was also associated with UHU within 30 days when used as a continuous exposure (OR 1.08 per point [95 %CI 1.01-1.16]), and when partitioned at a score > 3 (OR 1.79 [95 %CI 1.13-2.74]) and a score > 6 (OR 1.93 [95 %CI 1.02-3.46]). No other intra- or post-procedural PREMs were associated with any AEs or UHU. Patient-reported abdominal pain from a Likert-based PREM at the time of discharge from ERCP was associated with pancreatitis, perforation, and UHU within 30 days. Applying PREMs could potentially prevent UHU and/or facilitate earlier management and improved outcomes for patients with post-ERCP AEs.

Utilising Patient-Reported Experience Measures to Drive Healthcare Improvements: The Application of Validated PREM Survey Tools in a Haemoglobinopathy Network in South London

Utilising Patient-Reported Experience Measures to Drive Healthcare Improvements: The Application of Validated PREM Survey Tools in a Haemoglobinopathy Network in South London

A randomized controlled trial of gamification to increase physical activity among black and Hispanic breast and prostate cancer survivors: Rationale and design of the ALLSTAR clinical trial

Survivors of breast and prostate cancer, especially those that are Black and/or Hispanic, are at high risk for cardiovascular events. Physical activity can reduce the risk of cardiovascular events in cancer survivors, but Black and Hispanic people are less likely to engage in routine physical activity. Concepts from behavioral economics have been used to design scalable, low-touch gamification interventions that increase physical activity in individuals at high risk for cardiovascular events, but the effectiveness of these strategies in Black and Hispanic survivors of breast and prostate cancer is uncertain. ALLSTAR (NCT05176756) is a pragmatic, virtual randomized controlled trial designed to evaluate the effectiveness of a gamification intervention informed by behavioral economic concepts to increase daily physical activity in Black and Hispanic breast and prostate cancer survivors who received cardiotoxic therapies and have additional risk factors for cardiovascular disease. Patients are either referred by their cancer care team or identified by electronic health record searches; contacted by letter, email, text message and/or phone; and complete enrollment and informed consent on the Penn Way to Health online platform. Patients are then provided with a wearable fitness tracker, establish a baseline daily step count, set a goal to increase daily step count by 1,500-3,000 steps from baseline, and are randomized 1:1 to control or gamification. Interventions continue for 6 months, with follow-up for an additional 3 months to evaluate the durability of behavior change. The trial has met its enrollment goal of 150 participants, with a primary endpoint of change from baseline in daily steps over the 6-month intervention period. Key secondary endpoints include change from baseline in daily steps over the 3-month post-intervention follow-up period, change in moderate to vigorous physical activity over the intervention and follow-up periods, and change in patient-reported measures of physical function, fatigue, and overall quality of life. ALLSTAR is a virtual, pragmatic randomized clinical trial powered to demonstrate whether gamification is superior to control in increasing physical activity in Black and Hispanic breast and prostate cancer survivors. Its results will have important implications for strategies to promote physical activity in survivors of breast and prostate cancer, specifically among minority populations. clinicaltrials.gov; https://clinicaltrials.gov/study/NCT05176756.

Identification of patient-reported outcomes measures (PROMs) and patient-reported experiences measures (PREMs) in Gaucher disease in Spain

BackgroundPatient-reported outcome measures (PROMs) and patient-reported experiences measures (PREMs) are crucial for understanding the impact of GD on quality of life and patient's perceptions on care, but also to guide decision-making processes. Nevertheless, no specific PREMs in GD have been published, neither PROMs for Spanish GD patients have been developed. MethodsTwo project coordinators selected key-points to be included in a PROMs/PREMs questionnaire, and the scientific committee and a group of expert patients contributed to the initial draft. Then, 9 meetings with experts were held to discuss controversial points. After, a questionnaire with 103 items regarding symptomatology, aspects of daily life and care experience was developed. Finally, it was conducted a Delphi survey among a multidisciplinary group of experts in GD. ResultsConsensus was reached on 85 out of the 103 items. Recommendations on PROMs and PREMs regarding symptomatology, aspects of daily life and care experience were obtained. Consensus was reached on the importance of considering fatigue, concentration problems, and communication issues in GD patients using 5-step analog scales. Panelists recommended asking GD patients about the impact on social functioning and work/school performance. Finally, consensus was reached on considering care experiences, such as treatment satisfaction, treatment interruptions or transitions and healthcare professionals involved in patient's management to perceive patient's perceptions. ConclusionThis expert consensus may help developing GD-specific PROMs/PREMs for improving GD management. Properly developed and validated PROMs/PREMs may help decision-making, establishing patient-tailored therapeutic and follow-up goals.

The use of PROMs (patient-reported outcome measures) and PREMs (patient-reported experience measures) in Cardiology: current state and applications to improve patient care

The integration of patient-reported outcomes and experiences through PROMs and PREMs tools represents a significant evolution in the quality of care and clinical practice. This article reviews the state of the art and the application experiences of these tools, focusing on their impact on the management of cardiovascular diseases. The use of PROMs and PREMs allows for a more comprehensive assessment of patient well-being by integrating with traditional clinical indicators. An increasing number of studies suggests that the systematic collection of these data can help physicians in better identifying individual patient's needs, improving doctor-patient communication, and personalizing therapies. In aggregate form, these data can be used to improve the quality of services. This article explores the main international experiences, starting from the activities carried out in this field by the European Society of Cardiology, the challenges in implementing such tools, and the prospects for a more widespread adoption in daily clinical practice. It emphasizes the activities carried out in Italy by the Fondazione Toscana Gabriele Monasterio and the Management and Healthcare Laboratory of the Scuola Superiore Sant'Anna of Pisa, highlighting the importance of validated tools, appropriate technologies, and a cultural change to promote patient-centered care.

Impact of sociodemographic status and sex on chronic rhinosinusitis and olfaction in people with cystic fibrosis.

Sociodemographic status (SDS) including race/ethnicity and socioeconomic status as approximated by education, income, and insurance status impact pulmonary disease in people with cystic fibrosis (PwCF). The relationship between SDS and chronic rhinosinusitis (CRS) remains understudied. In a prospective, multi-institutional study, adult PwCF completed the 22-Question SinoNasal Outcome Test (SNOT-22), Smell Identification Test (SIT), Questionnaire of Olfactory Disorder Negative Statements (QOD-NS), and Cystic Fibrosis Questionnaire-Revised (CFQ-R). Lund-Kennedy scores, sinus computed tomography, and clinical data were collected. Data were analyzed across race/ethnicity, sex, and socioeconomic factors using multivariate regression. Seventy-three PwCF participated with a mean age of 34.7±10.9 years and 49 (67.1%) were female. Linear regression identified that elexacaftor/tezacaftor/ivacaftor (ETI) use (β=‒4.09, 95% confidence interval [CI] [‒6.08, ‒2.11], p<0.001), female sex (β=‒2.14, 95% CI [‒4.11, ‒0.17], p=0.034), and increasing age (β=‒0.14, 95% CI [‒0.22, ‒0.05], p=0.003) were associated with lower/better endoscopy scores. Private health insurance (β=17.76, 95% CI [5.20, 30.32],p=0.006) and >16 educational years (β=13.50, 95% CI [2.21, 24.80], p=0.020) were associated with higher baseline percent predicted forced expiratory volume in one second (ppFEV1). Medicaid/Medicare insurance was associated with worse endoscopy scores, CFQ-R respiratory scores, and ppFEV1 (all p<0.017), and Hispanic/Latino ethnicity was associated with worse SNOT-22 scores (p=0.047), prior to adjustment for other cofactors. No other SDS factors were associated with SNOT-22, QOD-NS, or SIT scores. Differences in objective measures of CRS severity exist among PwCF related to sex, age, and ETI use. Variant status and race did not influence patient-reported CRS severity measures or olfaction in this study. Understanding how these factors impact response to treatment may improve care disparities among PwCF. NCT04469439.

Single-encounter elicitation framework for diagnostic excellence patient-reported measures: SEE-Dx-PRM

ObjectiveTo create a conceptual framework for assessing patient-reported diagnostic excellence of a single diagnostic encounter. MethodsWe held multiple expert panel meetings to prioritize a priori identified diagnostically relevant patient-reported experience and outcome domains. We combined and synthesized expert feedback with our experience in measure development and the reflections of a patient focus group. We then developed the framework, SEE-Dx-PRM (Single-Encounter Elicitation Framework for Diagnostic Excellence Patient-Reported Measures). ResultsWe defined the SEE-Dx-PRM's scope as intended for a single diagnostic encounter in emergency or urgent care, prospective and agnostic of the health condition, and with a timeframe of within several days up to a month from the encounter. The SEE-Dx-PRM's diagnostic excellence outcomes are: (1) accurate diagnosis and (2) either final, or working diagnosis, or specific next steps to establish diagnosis that were communicated and comprehended by patients. SEE-Dx-PRM encompasses 2 domains associated with accurate diagnosis, 5 domains of patient perception of iterative diagnostic process, 5 domains associated with communication and comprehension, and a domain associated with uncertainty. ConclusionSEE-Dx-PRM-informed measures might support quality improvement, prompt system response, and research on diagnostic excellence. InnovationSEE-Dx-PRM presents a novel patient-centered framework for the emerging diagnostic excellence construct and its measurement.

The Association Between Patient-Reported Disease Burden and Treatment Switching in Patients with Plaque Psoriasis Treated with Nonbiologic Systemic Therapy.

This real-world study investigated the impact of patient-reported disease burden and health-related quality of life (HRQoL) on switching from systemic nonbiologic to biologic therapy in patients with plaque psoriasis. Biologic therapy-naive (biologic-naive) patients aged ≥18 years who were using systemic nonbiologic treatment and who enrolled in the CorEvitas Psoriasis Registry between April 2015 and August 2022 were included. Measures of patient-reported disease burden and HRQoL were collected at Registry enrollment. The primary outcome of interest was initiation of biologic therapy within 45 days of enrollment. Multivariable logistic regression models were fitted separately for each patient-reported measure, adjusting for patient, disease, and treatment characteristics, including physician-rated disease severity. Adjusted odds ratios of switching to biologic therapy were estimated for greater versus lesser burden for each measure. Of 848 included patients, 323 (38.1%) switched to biologic treatment. Greater patient-reported burden was independently associated with switching, with significantly higher adjusted odds ratios (95% confidence interval) for greater versus lesser burden as measured by the Dermatology Life Quality Index (1.55 [1.08-2.23], P=0.017), visual analog scale (VAS) for itch (2.14 [1.49-3.08], P<0.001), VAS for skin pain (2.18 [1.45-3.29], P<0.001), VAS for fatigue (1.66 [1.15-2.40], P=0.007), Patient Global Assessment-VAS (3.09 [1.94-4.91], P<0.001), and with activities impairment on the Work Productivity and Activity Impairment questionnaire (2.51 [1.72-3.65], P<0.001). In addition to clinically assessed disease severity, patient-reported disease burden and quality of life may drive the switch to biologic treatment in real-world patients with plaque psoriasis.

Patient Perception of Prolapse Condition Questionnaire: A Validated Patient-Reported Outcome Measure.

Identifying patient-reported outcome measures allows management of urogenital prolapse to be tailored to reflect symptom bother and expectations of treatment. We devised a new single-item questionnaire, the Patient Perception of Prolapse Condition (PPPC), based on the Patient Perception of Bladder Condition (PPBC). The aim was to evaluate the criterion validity, test/re-test reliability and responsiveness of the PPPC. Women attending a tertiary urogynaecology clinic were recruited. At visit 1, patients completed the Prolapse Quality of Life (P-QOL) and PPPC questionnaires, and underwent a Pelvic Organ Prolapse Quantification (POP-Q) examination. This allowed assessment of criterion validity using Spearman's rank correlation (rho) of the PPPC against validated subjective and objective outcomes. At visit 2, within the next 6weeks, PPPC was repeated to assess test/re-test reliability using Cronbach's alpha (α). In those undergoing pelvic floor surgery, responsiveness of the PPPC was assessed at visit 3 by correlating PPPC and P-QOL scores 6weeks post-operatively. A total of 178 patients attended visit 1, 60 attended visit 2 and 58 attended visit 3. At visit 1, there were moderate correlations between the PPPC and both objective (POP-Q: rho = 0.385, p < 0.01, CI 0.192-0.549) and subjective (P-QOL: rho = 0.635, p < 0.01, CI 0.493-0.744) measures confirming criterion validity. Test/re-test reliability was high (α = 0.89). Correlation with post-operative PPPC and P-QOL confirmed moderate responsiveness (rho = 0.54, p < 0.01). The PPPC, a novel single-item patient-reported measure of prolapse condition, demonstrated good criterion validity, test/re-test reliability and responsiveness. These findings support the use of the PPPC as a global assessment of prolapse condition.

Development of a novel Patient-Reported Outcome Measure (PROM) for adults with an Inherited Cardiac Condition (ICC)

Abstract Background Research on the quality-of-life (QoL) among patients with inherited cardiac conditions (ICC) is limited. Existing evidence from a systematic review indicates that most studies rely on generic measures of health-related QoL, which may not adequately capture ICC-specific factors. The current study aims to develop a disease-specific patient-reported outcome measure to address this gap. Methods Using a qualitative study design, we first conducted focus groups until data saturation was achieved (n=15). Additionally, an expert panel of healthcare professionals was interviewed to ascertain their perspectives on patient-centered care and to evaluate face validity. Transcripts of all focus groups and interviews were analyzed thematically using Atlas.ti, qualitative analysis software, to identify concepts and formulate survey items for the initial instrument. We used the ‘Centre for Health Promotion’ QoL model, consisting of three domains- Being, Belonging, and Becoming- as the theoretical framework for our analysis. Results Our analysis revealed alignment with specific QoL domains of the overarching framework and identified a gap in genetic-specific domains. A novel overarching theme, genetic well-being, was identified, encompassing specific constructs related to future uncertainty, reproductive concerns, and the anticipation of disease development, thus enriching the conceptualization of QoL in the context of inherited cardiac conditions. The discussion will include an exploration of the face validity of the draft instrument. Conclusion Patients diagnosed with an inherited cardiac condition (ICC) face a spectrum of challenges originating from both disease-related stressors and hereditary factors alike. Recognizing that relying solely on objective clinical assessment may fail to capture the full impact of the disease, there has been an increasing focus on incorporating patient-reported measures into disease evaluation. This qualitative study contributes to developing a comprehensive patient-reported outcome measure tailored to individuals with ICC.PROM development study

Revealed and stated preferences for sharing of patient-reported data in Austria

Abstract Objectives Routine collection of health data is essential for creating sustainable, efficient, and equitable health systems. While administrative health data are collected automatically, successful routine collection of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) depends on voluntary participation. The aim of this study is to investigate how to increase participation in routine patient-reported data collection. Methods This mixed methods study used representative survey data from the Austrian population aged 18-70 (N = 1260) and 15 semi-structured narrative interviews with citizens and health data experts collected in 2024. Survey respondents were shown examples of PREMs and PROMs and indicated their willingness to share them, depending on the recipient and purpose. Interviewees answered the same questions while providing insight into their decision-making process, which was analyzed using thematic analysis. Wilcoxon rank sum tests were used to assess differences in willingness to share across recipients and data collection purposes. Results Survey respondents were more willing to share PREMs than PROMs (“rather yes” vs. “rather no”, p &amp;lt; 0.001). One explanation given in the interviews is that PROMs are more personal and convey sensitive information. In terms of sharing PROMs, people were most likely to share with their GP (81%) and least likely to share with private companies (7%). Facilitators for sharing identified in the interviews were improving personal care and the health system, while barriers were use for profit generation and fear of negative consequences for the person sharing. Conclusions The results suggest handling the collection of PROMs demands greater caution compared to PREMs. Furthermore, clearly communicating personal and societal benefits arising from the collection and analysis of self-reported health data may increase participation in routine self-reported health data collection. Key messages • The collection of self-reported health data depends on voluntary participation. Clearly communicating personal and societal benefits of sharing self-reported data can motivate participation. • Self-reported data collection is essential for sustainable and efficient health systems. Compared to PREMs, people are more reluctant to share PROMs because they contain sensitive information.

Patient-Reported Indicator Surveys (PaRIS): making the case for co-development and adaptation to national contexts

Abstract In this presentation we discuss the early implementation of the OECD’s Patient-Reported Indicator Surveys (PaRIS) in primary care, highlighting the importance of co-development and national adaptation. The PaRIS initiative focuses on collecting patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) from individuals with chronic conditions and their primary care providers. This data collection is critical as populations age and the prevalence of chronic conditions increases, necessitating health systems that prioritize patient-centered care. The co-development process of the PaRIS survey involved extensive international collaboration, incorporating feedback from policymakers, healthcare providers, patients, and academics, thereby enhancing the relevance and ownership of the project. An example of successful stakeholder engagement is the creation of the PaRIS Patient Advisory Panel, which included representatives from various patient organizations who participated in all stages of the survey’s development. Challenges encountered during pilot implementations varied by country, influenced by factors like existing data infrastructures and regulatory environments. For instance, countries lacking robust data collection systems faced more significant hurdles in adapting the survey to their contexts. The article emphasizes that while rigorous standardization is essential for making international comparisons, adaptation to local contexts is crucial for addressing specific implementation challenges. The joint efforts of all stakeholders are vital for the success of international initiatives like the PaRIS survey. Such collaborative efforts not only facilitate the collection of meaningful data but also contribute to the enhancement of primary care quality through informed policymaking and improved patient care practices.

Rib-sparing subclavian vein decompression in venous thoracic outlet syndrome

ObjectiveVenous thoracic outlet syndrome (VTOS), a compression syndrome of the subclavian vein at the costoclavicular junction, is commonly treated with first rib resection. This invasive procedure carries a risk of serious complications. The purpose of this single-center cross-sectional study was to evaluate the long-term outcome of non-bony decompression by resection of the subclavius muscle and tendon and to provide a detailed description of the procedure. MethodsPatients who underwent rib-sparing decompression for VTOS between July 2014 and September 2023 were analyzed using clinical and radiological examinations. Patient-reported measures were used to assess functional disability and residual symptoms (DASH) and disease-specific quality of life and symptoms (VEINES-QOL/SYM). ResultsTen patients were included in the study. Seven were treated for Paget-Schroetter syndrome and 3 for McCleery syndrome. At mean follow up of 45.4 (SD 31.0) months, all patients reported significant resolution of initial symptoms with patent vasculature on Doppler ultrasonography. All patients had a Villalta PTS score <4, indicating the absence of post-thrombotic syndrome. A mean DASH score of 3.8 (SD 5.3) indicated minimal functional disability. Patients reported minimal overall impact on their quality of life as reflected by the mean VEINES-QOL score of 92.6 (SD 8.9) and low severity of venous symptoms as indicated by the mean VEINES-SYM score of 92.7 (SD 9.8). ConclusionOur analysis suggests that non-bony decompression with resection of the subclavius muscle and tendon is a safe and effective intervention for definitive treatment of VTOS that is less invasive than first rib resection.

Minimum Dataset of Lung Cancer Patients: An Initial Step Towards Developing a Web-Based Personal Health Record

Background: Personal Health Records (PHR), which utilize advanced health information technology tools, play a crucial role in patient self-management and improving the control of chronic diseases such as lung cancer. To optimize the design of these systems, it is essential to determine the necessary data elements. Objectives: This study aims to identify the minimum dataset required for designing a web-based PHR for lung cancer patients. Methods: This descriptive, cross-sectional research was conducted in 2023. Initially, a lung cancer dataset was extracted through text analysis. In the next phase, a proposed minimum lung cancer dataset was formulated into a questionnaire containing 18 data groups, including 126 data elements. The dataset underwent expert validation in two phases using the Delphi technique. Data analysis was performed using SPSS version 26, with descriptive statistics employed. Results: The minimum web-based PHR dataset for lung cancer patients, consisting of 18 data groups (112 data elements), includes demographics, insurance information, emergency contact details, patient symptoms, tumor-related data, physician details, treatment information, patient-reported measurements, personal medical history, history of procedures and surgeries, visits, allergies, family history, medication information, test results, imaging data, dietary information, and educational materials. Conclusions: Based on the study findings, it is recommended that lung cancer data management encompass not only routine information but also additional dimensions such as allergies, tumor-related information, and dietary details. Collecting comprehensive and complete data can significantly enhance the treatment process and post-treatment follow-up.

Collection and use of patient-reported experience measures: approach to improve health care

Abstract Background Patient experience is one of the fundamental determinants of healthcare quality. There is progress in the collection of PREM in national level for hospitalized patients since 2020 in Latvia. Aim Analyze (2020.-2022.) in-patients Top-box rates about communication, share-decision making, patient safety and Net Promoter Score (NPS). Methods Project starting point was 2019. Agreement with EC, Sant’Anna School, Ministry of Health and Centre for Disease Prevention and Control of Latvia. Since 2020, the collection of PREM has been taking place regularly in hospitals (around 40% from all hospitals) and on average 20% response rate of those who agreed to participate in the survey. PREM questionnaire according to HCAHPS (Consumer Assessment of Healthcare Providers and Systems) standards, including Picker Institute patient experience questions. In line with OECD (Organization for Economic Co-operation and Development) recommendations, patient safety issues are also included. Top-box rates (most positive response) and percentiles (25th - 75th) were calculated. Results Totally 17019 adult (18 years and more) patient responses were analyzed with response rate 20.3% (n = 83983). 74.6% (67.5-78.2) during hospital stay doctors always explain things in a way you could understand and sufficiently involved in the decision-making process of treatment - 75.0% (70.1-81.4). During hospital stay 4.1% (n = 601) experienced patient safety incidents which were patient-reported. The most common groups were wrong patients, medication errors, incl. adverse drug reactions and falls. Hospitals achieved a NPS of 61 for 3 year period (2020.-2022.). Conclusions Collecting information about the patient experience may be the starting point for engaging patients and moving to more patient-centered health care. The results of these in-patient PREM data can be used to identify areas of improvement and make changes to better meet the needs and expectations of their patients. Key messages • It is a good practice for the implementation of new health care quality data - patient experience reported measures at the national level. • Feedback about the patient experience on regular basis provides insight into patient needs, preferences and values, which can help to improve the quality and safety of care.