New IJIR comment warns that relying only on patient self-identification can misclassify PE PE “self-labeling” ≠ diagnosis. Read more 👉 rdcu.be/e6O0a
#PrematureEjaculation #SexualMedicine #Andrology #Urology #ClinicalResearch #PatientReportedOutcomes #IJIR

Open-access: Orgasmometer-m (Mandarin) validation + evidence that men with premature ejaculation report lower orgasm intensity (230 PE vs 107 controls).
Read more here 👉 rdcu.be/e62V8
#SexualMedicine #Andrology #Urology #PrematureEjaculation #PatientReportedOutcomes #ClinicalResearch #OpenAccess

SMDM Events DSCCo SIG Presents: Distorted Patient-Reported Outcomes: The impact of bot responses on violence measurement and clinical interpretation.

Coming up Wednesday --> Bot responses in online surveys aren't just a data quality issue — they have real consequences for how we measure and interpret violence in clinical settings. Don't miss this session! bit.ly/3NkTTbd #SMDM #PatientReportedOutcomes #MedicalDecisionMaking #BehavioralHealth

A Short Patient-Reported Outcome Measure for Oral Anti#Cancer Agents: Multicenter Observational Study Background: The Michigan Oncology Quality Consortium developed a rapid patient-reported outcome measure (RapidPRO) focused on oral anti#Cancer agents (OAAs). We piloted this measure in 6 oncology practices to determine its usefulness in representing the symptom experience and medication adherence among individuals taking OAAs. It is common in oncology for #Cancer-specific approaches to be used. We sought to use 1 instrument for all OAAs as a means to simplify future implementation in practice. Objective: This study aimed to describe the use of RapidPRO in practice and quantify clinical metrics in RapidPRO for symptom burden, confidence to manage symptoms, confidence to know when to seek care, and OAA medication adherence. Methods: This observational study was conducted across 6 practices from July 2016 to December 2018. RapidPRO assesses symptoms, patient confidence, and medication adherence with respect to OAAs. Results: There were 2252 RapidPROs completed by 695 patients. Among individuals completing at least 2 RapidPROs, the median number of days between them was 28 (IQR 14-42). Of the 2252 completed RapidPROs, 1213 (53.9%) reported at least one moderate or severe symptom, and 28% (485/1705) reported medication nonadherence. Most bothersome symptoms (MBSs; n=1045) were reported in 35.1% (790/2252) of the RapidPROs, and 46.5% (323/695) of all patients reported an MBS. In exploratory analyses, RapidPROs that reported a moderate or severe symptom or lower confidence to manage symptoms were more likely to be nonadherent to OAA therapy. The most common reason for medication nonadherence was “experienced side effects.” Conclusions: These results show that most RapidPROs reported at least one moderate or severe symptom and 28% (485/1705) reported medication nonadherence. As well, RapidPRO was able to capture most patients’ MBSs. By implementing RapidPRO, practices can identify patients who experience symptoms, as well as those who report medication nonadherence.

JMIR Formative Res: A Short Patient-Reported Outcome Measure for Oral Anti#Cancer Agents: Multicenter Observational Study #CancerResearch #Oncology #PatientReportedOutcomes #CancerCare #MedicationAdherence

Patient centricity: How pharma can move beyond the buzzwords One important way that pharma companies can deliver true patient advocacy is by bringing cross-functional experience to the table.

#Patientcentricity #Patients #pharmaceuticalindustry #patientfocus #patientmindset #patientprogrammes #patientadvocacy #patientpartnerships #patientexperience #patientadvocates #patientadvocacy #patientinsights #realworldexperience #patientreportedoutcomes #patientfocus
zurl.co/Wca8D

Giving patients a voice: How self-reported data improves cancer treatment A large multinational clinical trial has found that giving healthcare providers access to European Organisation for Research and Treatment of Cancer (EORTC) patient-reported outcome (PRO) data signifi...

Integrating the patient’s voice: A new international study from @qol.eortc.org at @eortc.org shows access to patient-reported outcome (PRO) data improves the consistency of the evaluation of treatment-related side effects in patients with #cancer. #PatientReportedOutcomes

Patient advocate talking about patient reported outcomes

Our very own @nrgonc.bsky.social patient advocate, Laurel Pracht, presenting at the #NRG2026 winter Town Hall on #patientreportedoutcomes

JAMA Network Open article: "Standards for Health-Related Quality of Life Measurement in Adolescents and Young Adults With Cancer" by Christina Signorelli, Chioma Asuzu, and Lori Wiener. Published online December 19, 2025.

Consistent use and integration of #PatientReportedOutcomes such as the QLQ-AYA30 into routine oncology practice may improve clinical decision-making and support equitable care for young cancer survivors. ja.ma/45l9ygr

Research Article

Association of Patient Resilience With Patient-Reported Physical and Mental/Emotional Quality of Life in Systemic Lupus Erythematosus

📖 www.jrheum.org/cgi/content/...
@bcmhouston.bsky.social

#Lupus #PatientReportedOutcomes

AL #amyloidosis trial S2213 compares autologous transplant to Dara-VCD consolidation. Also compares post-consolidation #PatientReportedOutcomes for physical function and other #HRQoL measures.
QoL/PRO Co-PI: Terri Parker, MD Yale Cancer Center
SWOG.org/clinical-trials/S2213

Users' guides to the medical literature. XII. How to use articles about health-related quality of life. Evidence-Based Medicine Working Group - PubMed Users' guides to the medical literature. XII. How to use articles about health-related quality of life. Evidence-Based Medicine Working Group

This #JAMA Users’ guide to the medical literature explains how to use an article that addresses how to understand and interpret articles about patients’ #QualityofLife usually measured using #PatientReportedOutcomes (PRO).

pubmed.ncbi.nlm.nih.gov/9103349/

Read the second issue

Read the second issue today!
spkl.io/63323AXHGl
#APRO #PROMIS #SecondIssue #PatientReportedOutcomes

New in JCF–I:

TOPCAT imaging sub-study (N=211) shows no association between diastolic echo changes & KCCQ health status in HFpEF.

🧠 Patient-reported outcomes may better reflect treatment response

🔗 https://bit.ly/3JVsz1d

#HFpEF #Echo #PatientReportedOutcomes #CardioBlueSky #JCFIntersections

#Research #CALD #PatientReportedOutcomes #HealthEquity #Survey #HealthResearch (6/6)

#ESMOTATAsia25: Presentations highlight the value of integrating #PatientReportedOutcomes (#PRO) into #EarlyPhaseTrials with guidance on standardisation.

Read more in the #ESMODailyReporter

🔗 dailyreporter.esmo.org/esmo-targete...

Assessing the minimal important difference in symptoms: a comparison of two techniques - PubMed We have developed a method for estimating the minimally important difference (MID) for health status measures. Whereas the conventional approach requires patients to judge themselves relative to their...

Two fundamental strategies for establishing #MinimalImportantDifferences (MIDs) in #PatientReportedOutcomes (PROMs). The more popular is looking at changes within person over time. This paper provides an alternative: looking at differences between persons.
pubmed.ncbi.nlm.nih.gov/8892486/

Coaching Patients to Understand and Use Patient-Reported Outcome Data: Intervention Design and Evaluation Background: Providing patients with information about their health and treatment options is an important part of the shared decision-making process, which can lead to care that best reflects patient needs, values, and preferences. Patient-reported outcomes (PROs) are regularly collected in clinical contexts and can be embedded in decision aids as patient-reported measures of health status. One example of a PRO-based decision aid is the Arthritis care through Shared Knowledge (A.S.K.) report, which provides patients with individual PRO data for decision-making about osteoarthritis care. Given that using data in decision-making is unfamiliar to many patients, support may be required to ensure these aids are utilized as intended. Objective: This paper describes how A.S.K coaching, a group education session, was designed to ensure patients understood the A.S.K. report, including their PRO scores, and how to use the information to inform clinical consultations. We present (a) quantitative evaluation results associated with attendance and self-assessment of learning and (b) qualitative evaluation results on motivation to attend, acceptability of the session format, and achievement of session goals. Methods: The virtual, one-hour session was designed and refined collaboratively with clinical experts and patient advisers. Patients in one arm of a pragmatic cluster-randomized trial evaluating the A.S.K. report were then invited to attend coaching. To understand the profile of attendees, sociodemographic and clinical data were compared with all participants invited to coaching (N=1545) and a patient-reported assessment of self-efficacy was collected on a subset (N=178). Additionally, a post-session survey was used to self-assess learning. Qualitative data were synthesized from semi-structured post-coaching interviews, paired pre-/post-coaching interviews, and free-text responses to a post-session survey. A qualitative descriptive approach was used for analysis. Results: Compared to non-attendees, patients reporting higher education, greater health literacy, Medicare insurance, and lower self-efficacy for managing treatments were more likely to attend A.S.K. coaching when invited. Participants’ self-assessment of learning showed improved understanding of current and projected symptoms and where to find additional osteoarthritis information. Qualitatively, patients reported attending to gain information that could benefit their treatment or to aid in research. The virtual, group format was generally described as acceptable, and the session goals related to report understanding, patient empowerment, appointment preparation, and additional resources were met. Suggestions for improvement, such as providing more opportunities for group interaction, were also provided. Conclusions: Results highlight the value of coaching as an intervention to help patients understand and use novel health information, including PRO symptom assessments, for decision-making. Given that it was well liked by patients, promoted greater understanding of the decision aid, and increased feelings of empowerment in preparing for a clinical consultation, A.S.K. Coaching appears to be a promising intervention to support patients in making decisions using a PRO-based decision aid.

JMIR Formative Res: Coaching Patients to Understand and Use Patient-Reported Outcome Data: Intervention Design and Evaluation #PatientCare #SharedDecisionMaking #HealthEducation #PatientReportedOutcomes #ProData

#feasibility of an Electronic Patient-Reported Outcome System in People Living With HIV: Retrospective Analysis of a Mobile App-Based Pilot Study Background: Advances in antiretroviral therapy have transformed HIV into a manageable chronic condition, allowing people living with HIV (PLWH) to live longer. However, with aging, PLWH face increased risks of lifestyle-related diseases and unaddressed psychosocial issues, including stigma, discrimination, and mental health concerns. Patient-reported outcomes (PROs) are essential tools in person-centered care and have demonstrated clinical utility in oncology and rheumatology, yet remain underutilized in infectious disease settings. Recently, the European AIDS Clinical Society has recommended electronic PRO (ePRO) systems to support HIV care. Objective: This study aimed to evaluate the #feasibility and clinical utility of a smartphone-based ePRO system specifically developed for PLWH in Japan. Methods: A retrospective study was conducted among PLWH who attended the HIV outpatient clinic at Teikyo University Hospital between July and September 2022. Participants who consented to use the ePRO system installed a smartphone application and completed the HIV Symptom Index prior to their clinic visit. Physicians reviewed the responses during consultations. Following the visits, patients completed a #usability survey addressing clarity, response time, satisfaction, communication quality, and intention for future use. Medical records were reviewed to determine whether any new symptoms, findings, or medical actions had been added that had not been documented in the previous two years. Results: A total of 27 PLWH (median age 46 years, 100% male) used the ePRO app, and 25 (93%) completed the post-use questionnaire. Of these, 19 (76%) completed the symptom index within 5 minutes, while one participant took more than 15 minutes. Regarding #usability, 76% reported being satisfied or very satisfied, and 76% found the system useful in improving communication with their provider. Additionally, 76% expressed willingness to use the system again, while five indicated interest only if improvements were made. Medical record analysis revealed that 17 patients (63%) had new clinical information documented, including mental health symptoms (n=7), skin problems (n=7), and new diagnoses or treatment changes in 6 cases. Over 40% of patients reported issues such as anxiety, insomnia, dermatologic symptoms, or concerns related to body image. Conclusions: This pilot study demonstrated that a smartphone-based ePRO system for PLWH is feasible and well accepted in real-world clinical practice. It facilitated early detection of psychosocial and physical issues that may otherwise be overlooked in routine care and improved patient–provider communication. The findings support the integration of ePRO systems into HIV care and underscore the need for further refinement of the app and prospective studies to assess long-term impact on patient outcomes and quality of care.

JMIR Formative Res: #feasibility of an Electronic Patient-Reported Outcome System in People Living With HIV: Retrospective Analysis of a Mobile App-Based Pilot Study #HIV #PatientReportedOutcomes #ePRO #DigitalHealth #HealthcareInnovation

Age Impacts Clinical and Patient-Reported Outcomes... : Plastic and Reconstructive Surgery d patient-reported outcomes (PROs) using the BREAST-Q longitudinally 5 years after postmastectomy breast reconstruction. Methods: The authors conducted a retrospective analysis of patients who unde...

Featured today by @MSKLibrary: Age Impacts Clinical and Patient-Reported Outcomes following Postmastectomy Breast Reconstruction dx.doi.org/10.1097/PRS....

#BreastReconstruction #PostMastectomy
#PatientReportedOutcomes #BreastCancerRecovery
#ReconstructiveSurgery #PlasticSurgeryOutcomes

Timely and comprehensive HRQoL data is vital for integrating patient experiences into clinical and regulatory decision-making.

#Onco404 #Cancer #Kanser #Oncology #ClinicalTrials #FDA #QoL #HRQoL #MedSky #OncSky #PatientReportedOutcomes

A new study analyzed 233 trials associated with 207 FDA approvals (2015–2020) and found alarming gaps in health-related quality of life (HRQoL) reporting.

#BMJ #BMJOncology

#Onco404 #Cancer #Kanser #Oncology #ClinicalTrials #FDA #QoL #HRQoL #MedSky #OncSky #PatientReportedOutcomes

Featured today by @MSKLibrary: Improved Patient-Reported Outcomes With Post-Transplant Cyclophosphamide: A Quality-of-Life Evaluation and 2-Year Outcomes of BMT CTN 1703 dx.doi.org/10.1200/JCO....

#BMTCTN1703 #PatientReportedOutcomes #QualityOfLife #TransplantResearch

📌 OncoTerm - Word of the Day! 👋 OncoTerm - Günün Kelimesi! 📌

Join us as we break down key terms to empower ourselves with knowledge in the fight against cancer.

#Onco404 #Cancer #Kanser #MedSky #OncSky #PatientCenteredCare #CancerCare #QualityOfLife #QoL #PatientReportedOutcomes #PROs #Vocabulary

Presenting a #patientreportedoutcomes workshop at Society for Clinical Trials 46th Annual Meeting! #SCT2025 #clinicaltrials #PROs @christinayap.bsky.social

Characterizing Patient-Reported Fatigue Using Electronic Diaries in Neurodegenerative and Immune-Mediated Inflammatory Diseases: Observational Study Background: Fatigue is a prevalent and debilitating symptom in many chronic conditions, including immune-mediated inflammatory diseases (IMIDs) and neurodegenerative diseases (NDDs). Fatigue often fluctuates significantly within and between days, yet traditional patient-reported outcomes (PROs) typically rely on recall periods of a week or more, potentially missing these short-term variations. The development of digital tools, such as electronic diaries (eDiaries), offers a unique opportunity to collect granular, real-time data. However, the #feasibility, adherence, and comparability of eDiary-based assessments to established PROs require further investigation. Objective: This study aimed to evaluate the #feasibility and acceptability of using a high-frequency eDiary to capture intra-day variability in fatigue and to compare eDiary data with scores obtained from the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F), a validated weekly recall PRO. Methods: Data were collected from 159 participants enrolled in the IDEA-FAST #feasibility Study; a four-week prospective observational study conducted at four European centres. Participants included individuals with NDDs (n=39), IMIDs (n=78), and healthy volunteers (HVs; n=42). Participants used an eDiary to report their physical and mental fatigue levels up to four times daily on a 7-point Likert scale (0 = low, 6 = high). Adherence was calculated as the proportion of completed eDiary entries relative to the total expected entries. Correlations between averaged eDiary scores and weekly FACIT-F scores were analysed. Results: Adherence to the eDiary protocol was 62% overall, varying by cohort, with the highest adherence (93%) observed in the primary Sjögren’s syndrome (PSS) cohort and the lowest adherence in Parkinson’s disease (PD) (43%) and Huntington’s Disease (HD) (44%) cohorts. The average adherence was 44% in the NDD cohorts and 74% in IMID cohorts. Fatigue levels showed clear diurnal variation, with significantly higher fatigue reported in the evening compared to the morning (p

JMIR Formative Res: Characterizing Patient-Reported Fatigue Using Electronic Diaries in Neurodegenerative and Immune-Mediated Inflammatory Diseases: Observational Study #PatientReportedOutcomes #FatigueResearch #NeurodegenerativeDiseases #InflammatoryDiseases #DigitalHealth

Incorporating Patient-Reported Outcome Measures and Patient-Reported Experience Measures in Addiction Treatment Services in Belgium: Naturalistic, Longitudinal, Multicenter Cohort Study Background: Traditionally, treatment outcomes of service users with a substance use disorder (SUD) are measured using objective and provider-reported indicators. In recent years, there has been a shift toward incorporating patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) to capture service users’ perspectives on treatment outcomes and experiences. Objective: The OMER-BE (Outcome Measurement and Evaluation as a Routine Practice in Alcohol and Other Drug Services in Belgium) study evaluates the acceptability and #feasibility of PROMs and PREMs in different SUD treatment services, using the recently developed International Consortium for Health Outcomes Measurement Standard Set for Addictions. This paper presents the design and baseline characteristics of the study, indicators of attrition at 45-day follow-up, and the #feasibility of the implementation of PROMs and PREMs in residential and outpatient services. Methods: A convenience sample of 189 treatment-seeking individuals with SUD from different inpatient (therapeutic communities and psychiatric centers) and outpatient treatment services was followed for six months. Sociodemographic characteristics; clinical factors; and PROMs including recovery strengths, quality of life, and global health were assessed at baseline and within 3 weeks after starting treatment. Additionally, PROMs and PREMs were measured 45, 90, and 180 days later. Comparisons were made between treatment modalities, and indicators of attrition at the 45-day follow-up were assessed using ANOVA and chi-square tests. Results: Baseline differences were observed between the three treatment modalities regarding education, SUD treatment history, primary substance, and Attention-Deficit/Hyperactivity Disorder Self-Report scores. Overall, patients in psychiatric treatment centers had a higher education level and less polysubstance use, while outpatients had fewer previous SUD treatments but received relatively more often opioid agonist treatment. Inpatients reported more attention-deficit/hyperactivity disorder symptoms and higher SUD severity than outpatients. Additionally, recovery strength scores were significantly lower in the outpatient group compared to the other groups, particularly in the subdomains of “Substance Use,” “Self-care,” and “Outlook on Life.” At the 45-day follow-up assessment, the attrition rate was 36.6%. Comparisons between participants who completed the 45-day follow-up and those who dropped out revealed that completers were significantly older, had a higher level of education, were more likely to live alone, and were more likely to have a mother born in Belgium. They also had higher average scores on the “Material Resources” domain of the Substance Use Recovery Evaluator, which includes questions about stable housing, a steady income, and effective financial management. Conclusions: Evaluating PROMs and PREMs appears to be feasible in a diverse group of treatment-seeking patients with SUD in Belgium. However, challenges remain for structural implementation in practice, especially in outpatient services. Routine monitoring of PROMs and PREMs has the potential to empower patients, service providers, and policy makers by providing a comprehensive understanding of service users’ needs and treatment effectiveness.

JMIR Formative Res: Incorporating Patient-Reported Outcome Measures and Patient-Reported Experience Measures in Addiction Treatment Services in Belgium: Naturalistic, Longitudinal, Multicenter Cohort Study #SubstanceUseDisorder #AddictionTreatment #PatientReportedOutcomes #HealthCare #MentalHealth

PhD defence alert! On April 24, Maarten Voorhaar successfully defended his PhD thesis titled "𝗧𝗮𝗶𝗹𝗼𝗿𝗲𝗱 𝘀𝗲𝗹𝗳-𝗺𝗮𝗻𝗮𝗴𝗲𝗺𝗲𝗻𝘁 𝘀𝘂𝗽𝗽𝗼𝗿𝘁 𝗳𝗼𝗿 𝗽𝗲𝗼𝗽𝗹𝗲 𝗹𝗶𝘃𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝗖𝗢𝗣𝗗" at @maastrichtu.bsky.social. 🎉

#SelfManagement #SharedDecisionMaking #PatientReportedOutcomes #PersonalisedCare

💻 📘 Check the link in bio!

Tailoring Rheumatoid Arthritis Visit Timing Based on mHealth App Data: Mixed Methods Assessment of Implementation and #usability Background: Visits to medical subspecialists are common, with follow-up timing often based on heuristics rather than evidence. Unnecessary visits contribute to long wait times for new patients. Specialists could enhance visit timing and reduce frequency by systematically monitoring patients’ symptoms between visits, especially for symptom-driven conditions like rheumatoid arthritis (RA). We previously designed an intervention using a mobile health application to collect patient-reported outcomes (PRO). One of several aims of the app was to assist rheumatologists in determining visit timing for patients with RA. The intervention did not reduce visit frequency. Objective: To explore possible reasons for the lack of association between the intervention and visit frequency, we describe app usage, assess #usability, and identify barriers and facilitators for using between-visit PRO data to reduce visits when patients’ symptoms are stable. Methods: We analyzed patients’ use of the app by reporting adherence (percent of PRO questionnaires completed during the 12-month study) and retention (use in last month of study). To examine rheumatologists’ experiences, we summarized views of the electronic health record (EHR)-embedded PRO dashboard and EHR inbox messages suggesting early or deferred visits. We assessed app #usability using the interactive mHealth App #usability Questionnaire for ease-of-use (MAUQ_E) and usefulness (MAUQ_U) for patients and the System #usability Scale (SUS) for rheumatologists. We assessed rheumatologist-level effects of intervention usage using Kruskal-Wallis rank sum and equality of proportion tests. We identified barriers and facilitators through interviews and surveys. Results: The analysis included 150 patients with RA and their 11 rheumatologists. Patients answered 53.3% of PRO questionnaires; this proportion varied by rheumatologist (range 40.7-67.0%). Over half of patients used the app during the final month of study (56% (range 51-65% by rheumatologist); the median number of months of use was 12. Rheumatologists viewed the dashboard 78 times (17.6% of 443 visits) with significant differences in viewing rates by rheumatologist (range 10-66%, P

JMIR Formative Res: Tailoring Rheumatoid Arthritis Visit Timing Based on mHealth App Data: Mixed Methods Assessment of Implementation and #usability #RheumatoidArthritis #mHealth #PatientReportedOutcomes #Usability #HealthcareInnovation

Graphic in white and green with the wording: "Upcoming training event. Introduction to Patient-Reported Outcomes (PROs) - online training course. Tuesday 20 May 2025". There are photos of the two presenters and the words "With guest speakers: Andria Joseph, Project Director, Health Economics and Outcomes Research, Adam Smith, Associate Project Director, Health Economics and Outcomes Research". The YHEC logo is in the bottom left corner.

🔎 Making Patient Perspectives Count
Join our online course, Introduction to Patient-Reported Outcomes (PROs), to find out more about how PROs shape healthcare research.

📅 Course date: Tuesday 20 May 2025
🔗 Register now: yhec.co.uk/training/out...
#PatientReportedOutcomes #PROs #HealthEconomics #HTA

2/ 🧑‍🔬 Our study involved 290 older adults (65+) discharged from EDs over 3 years, using qualitative interviews, item generation, and psychometric testing to create a reliable measure of care transition outcomes post-ED discharge. #PatientReportedOutcomes #EDCare