@Article{info:doi/10.2196/66466, author="Coleman, C. Brian and Corcoran, L. Kelsey and Brandt, A. Cynthia and Goulet, L. Joseph and Luther, L. Stephen and Lisi, J. Anthony", title="Identifying Patient-Reported Outcome Measure Documentation in Veterans Health Administration Chiropractic Clinic Notes: Natural Language Processing Analysis", journal="JMIR Med Inform", year="2025", month="Apr", day="2", volume="13", pages="e66466", keywords="Veterans Health Administration", keywords="natural language processing", keywords="quality of health care", keywords="chiropractic", keywords="patient reported outcome measures", keywords="NLP", keywords="AI", keywords="artificial intelligence", keywords="veteran", keywords="chiropractor", keywords="integrated health cohort", keywords="musculoskeletal diagnosis", keywords="musculoskeletal", keywords="quality of care", keywords="care", keywords="PROM", keywords="neural network", keywords="chiropractic care", abstract="Background: The use of patient-reported outcome measures (PROMs) is an expected component of high-quality, measurement-based chiropractic care. The largest health care system offering integrated chiropractic care is the Veterans Health Administration (VHA). Challenges limit monitoring PROM use as a care quality metric at a national scale in the VHA. Structured data are unavailable, with PROMs often embedded within clinic text notes as unstructured data requiring time-intensive, peer-conducted chart review for evaluation. Natural language processing (NLP) of clinic text notes is one promising solution to extracting care quality data from unstructured text. Objective: This study aims to test NLP approaches to identify PROMs documented in VHA chiropractic text notes. Methods: VHA chiropractic notes from October 1, 2017, to September 30, 2020, were obtained from the VHA Musculoskeletal Diagnosis/Complementary and Integrative Health Cohort. A rule-based NLP model built using medspaCy and spaCy was evaluated on text matching and note categorization tasks. SpaCy was used to build bag-of-words, convoluted neural networks, and ensemble models for note categorization. Performance metrics for each model and task included precision, recall, and F-measure. Cross-validation was used to validate performance metric estimates for the statistical and machine-learning models. Results: Our sample included 377,213 visit notes from 56,628 patients. The rule-based model performance was good for soft-boundary text-matching (precision=81.1\%, recall=96.7\%, and F-measure=88.2\%) and excellent for note categorization (precision=90.3\%, recall=99.5\%, and F-measure=94.7\%). Cross-validation performance of the statistical and machine learning models for the note categorization task was very good overall, but lower than rule-based model performance. The overall prevalence of PROM documentation was low (17.0\%). Conclusions: We evaluated multiple NLP methods across a series of tasks, with optimal performance achieved using a rule-based method. By leveraging NLP approaches, we can overcome the challenges posed by unstructured clinical text notes to track documented PROM use. Overall documented use of PROMs in chiropractic notes was low and highlights a potential for quality improvement. This work represents a methodological advancement in the identification and monitoring of documented use of PROMs to ensure consistent, high-quality chiropractic care for veterans. ", doi="10.2196/66466", url="https://medinform.jmir.org/2025/1/e66466" } @Article{info:doi/10.2196/50225, author="Jiang, Xinrui and Timmons, Michelle and Boroda, Elias and Onakomaiya, Marie", title="Impact of Platform Design and Usability on Adherence and Retention: Randomized Web- and Mobile-Based Longitudinal Study", journal="J Particip Med", year="2025", month="Mar", day="27", volume="17", pages="e50225", keywords="behavioral science", keywords="electronic patient-reported outcomes", keywords="ePROs", keywords="retention", keywords="adherence", keywords="patient engagement", keywords="clinical trials", keywords="mobile phone", abstract="Background: Low retention and adherence increase clinical trial costs and timelines. Burdens associated with participating in a clinical trial contribute to early study termination. Electronic patient-reported outcome (ePRO) tools reduce participant burden by allowing remote participation, and facilitate communication between researchers and participants. The Datacubed Health (DCH) mobile app is unique among ePRO platforms in its application of behavioral science principles (reward, motivation, identity, etc) in clinical trials to promote engagement, adherence, and retention. Objective: We evaluated the impact of platform design and usability on adherence and retention with a longitudinal study involving repeated patient-facing study instruments. We expected participants assigned to complete instruments in the DCH mobile app to stay in this study longer (increased retention) and complete more surveys while in this study (increased adherence) due to the enhanced motivational elements unique to the participant experience in the DCH app group, and this group's overall lower burden of participation. Methods: A total of 284 adult participants completed 24 weekly surveys via 1 of 4 modalities (DCH app vs DCH website vs third-party website vs paper) in a web-based and mobile longitudinal study. Participants were recruited from open access websites (eg, Craigslist or Facebook [Meta]), and a closed web-based user group. All participation occurred remotely. Study staff deliberately limited communications with participants to directly assess the main effects of survey administration modality; enrollment and study administration were largely automated. Participants assigned to the DCH app group experienced behavioral science--driven motivational elements related to reward and identity formation throughout their study journey. There was no homolog to this feature in any other tested platform. Participants assigned to the DCH app group accessed study measures using passcodes or smartphone biometrics (face or touch ID). Participants in the DCH website group logged into a website using a username and password. Participants in the third-party website group accessed web-based surveys via personalized emailed links with no need for password authentication. Paper arm participants received paper surveys in the mail. Results: Mode of survey administration (DCH app vs DCH website vs third-party website vs paper) predicted study retention (F9,255=4.22, P<.001) and adherence (F9,162=5.5, P<.001). The DCH app group had greater retention than the paper arm (t=?3.80, P<.001), and comparable retention to the DCH website group. The DCH app group had greater adherence than all other arms (DCH web: t=?2.42, P=.02; third-party web: t=?3.56, P<.001; and paper arm: t=?4.53, P<.001). Conclusions: Using an ePRO platform in a longitudinal study increased retention and adherence in comparison to paper instruments. Incorporating behavioral science design in an ePRO platform resulted in further increase in adherence in a longitudinal study. ", doi="10.2196/50225", url="https://jopm.jmir.org/2025/1/e50225" } @Article{info:doi/10.2196/60215, author="Amagai, Saki and Kaat, J. Aaron and Fox, S. Rina and Ho, H. Emily and Pila, Sarah and Kallen, A. Michael and Schalet, D. Benjamin and Nowinski, J. Cindy and Gershon, C. Richard", title="Customizing Computerized Adaptive Test Stopping Rules for Clinical Settings Using the Negative Affect Subdomain of the NIH Toolbox Emotion Battery: Simulation Study", journal="JMIR Form Res", year="2025", month="Mar", day="21", volume="9", pages="e60215", keywords="computerized adaptive testing", keywords="CAT", keywords="stopping rules", keywords="NIH Toolbox", keywords="reliability", keywords="test burden", keywords="clinical setting", keywords="patient-reported outcome", keywords="clinician", abstract="Background: Patient-reported outcome measures are crucial for informed medical decisions and evaluating treatments. However, they can be burdensome for patients and sometimes lack the reliability clinicians need for clear clinical interpretations. Objective: We aimed to assess the extent to which applying alternative stopping rules can increase reliability for clinical use while minimizing the burden of computerized adaptive tests (CATs). Methods: CAT simulations were conducted on 3 adult item banks in the NIH Toolbox for Assessment of Neurological and Behavioral Function Emotion Battery; the item banks were in the Negative Affect subdomain (ie, Anger Affect, Fear Affect, and Sadness) and contained at least 8 items. In the originally applied NIH Toolbox CAT stopping rules, the CAT was stopped if the score SE reached <0.3 before 12 items were administered. We first contrasted this with a SE-change rule in a planned simulation analysis. We then contrasted the original rules with fixed-length CATs (4?12 items), a reduction of the maximum number of items to 8, and other modifications in post hoc analyses. Burden was measured by the number of items administered per simulation, precision by the percentage of assessments yielding reliability cutoffs (0.85, 0.90, and 0.95), and accurate score recovery by the root mean squared error between the generating $\theta$ and the CAT-estimated ``expected a posteriori''--based $\theta$. Results: In general, relative to the original rules, the alternative stopping rules slightly decreased burden while also increasing the proportion of assessments achieving high reliability for the adult banks; however, the SE-change rule and fixed-length CATs with 8 or fewer items also notably increased assessments yielding reliability <0.85. Among the alternative rules explored, the reduced maximum stopping rule best balanced precision and parsimony, presenting another option beyond the original rules. Conclusions: Our findings demonstrate the challenges in attempting to reduce test burden while also achieving score precision for clinical use. Stopping rules should be modified in accordance with the context of the study population and the purpose of the study. ", doi="10.2196/60215", url="https://formative.jmir.org/2025/1/e60215" } @Article{info:doi/10.2196/58077, author="Kelly, Charlotte Sofia and Wegener, Kauffeldt Emilie and Kayser, Lars", title="Creation of Text Vignettes Based on Patient-Reported Data to Facilitate a Better Understanding of the Patient Perspective: Design Study", journal="JMIR Hum Factors", year="2025", month="Feb", day="5", volume="12", pages="e58077", keywords="patient-reported outcome", keywords="text vignette", keywords="data representation", keywords="Readiness and Enablement Index for Health Technology", keywords="understanding", keywords="health care system", keywords="data analysis", keywords="clinical training", keywords="clinician", keywords="health professional", abstract="Background: Patient-reported outcome (PRO) data refer to information systematically reported by patients, or on behalf of patients, without the influence of health care professionals. It is a focal point of the health care system's ambition toward becoming more involving and personalized. It is recognized that PROs provide valuable data. However, despite this recognition, there are challenges related to both patients' and clinicians' accurate interpretations of the quantitative data. To overcome these challenges, this study explores text vignettes as a representation of PROs. Objective: This study aimed to develop data-informed text vignettes based on data from the Readiness and Enablement Index for Health Technology (READHY) instrument as another way of representing PRO data and to examine how these are perceived as understandable and relevant for both patients and clinicians. Methods: The text vignettes were created from participant responses to the READHY instrument, which encompasses health literacy, health education, and eHealth literacy. The text vignettes were created from 13 individual text strings, each corresponding to a scale in the READHY instrument. This study consisted of 3 sequential parts. In part 1, individuals with chronic obstructive pulmonary disease completed the READHY instrument, providing data to be used to create vignettes based on cluster profiles from the READHY instrument. Part 2 focused on the development of scale-based strings representing all READHY dimensions, which were evaluated through iterative cognitive interviews. In part 3, clinicians and patients assessed the understanding and relevance of the text vignettes. Results: Clinicians and patients both understood and related to the text vignettes. Patients viewed the text vignettes as an accurate reflection of their PRO responses, and clinicians perceived the text vignettes as aligned with their understanding of patients' experiences. Conclusions: Text vignettes can be developed using PRO instruments, with individual scales as input strings. This provides an opportunity to present numeric values in a text format that is understandable and recognizable to most patients and clinicians. Challenges with the vignette's language and layout require customization and clinician training to ensure meaningful interpretation. Findings also support the need to expand the study and enhance clinical relevance with alternative or contextually relevant text vignettes. ", doi="10.2196/58077", url="https://humanfactors.jmir.org/2025/1/e58077" } @Article{info:doi/10.2196/60263, author="Floyd, B. Sarah and Sutton, C. Jordyn and Okon, Marvin and McCarthy, Mary and Fisher, Liza and Judkins, Benjamin and Reynolds, Cole Zachary and Kennedy, Blair Ann", title="Assessing Physician and Patient Agreement on Whether Patient Outcomes Captured in Clinical Progress Notes Reflect Treatment Success: Cross-Sectional Study", journal="J Particip Med", year="2025", month="Jan", day="23", volume="17", pages="e60263", keywords="patient outcomes", keywords="proximal humerus fracture", keywords="patient involvement", keywords="orthopaedic medicine", keywords="clinical progress notes", abstract="Background: It remains unclear if there is agreement between physicians and patients on the definition of treatment success following orthopedic treatment. Clinical progress notes are generated during each health care encounter and include information on current disease symptoms, rehabilitation progress, and treatment outcomes. Objective: This study aims to assess if physicians and patients agree on whether patient outcomes captured in clinical progress notes reflect a successful treatment outcome following orthopedic care. Methods: We performed a cross-sectional analysis of a subset of clinical notes for patients presenting to a Level-1 Trauma Center and Regional Health System for follow-up for an acute proximal humerus fracture (PHF). This study was part of a larger study of 1000 patients with PHF receiving initial treatment between 2019 and 2021. From the full dataset of 1000 physician-labeled notes, a stratified random sample of 25 notes from each outcome label group was identified for this study. A group of 2 patients then reviewed the sample of 100 clinical notes and labeled each note as reflecting treatment success or failure. Cohen $\kappa$ statistics were used to assess the degree of agreement between physicians and patients on clinical note content. Results: The average age of the patients in the sample was 67 (SD 13) years and 82\% of the notes came from female patients. Patients were primarily White (91\%) and had Medicare insurance coverage (65\%). The note sample came from fracture-related encounters ranging from the second to the tenth encounter after the index PHF visit. There were no significant differences in patient or visit characteristics across concordant and discordant notes labeled by physicians and patients. Among agreement levels ranging from poor to perfect agreement, physician and patient evaluators exhibited only a fair level of agreement in what they deemed as treatment success based on a Cohen $\kappa$ of 0.32 (95\% CI 0.10-0.55; P=.01). Furthermore, interpatient and interphysician agreement also demonstrated relatively low levels of agreement. Conclusions: The findings suggest that physicians and patients demonstrated low levels of agreement when assessing whether a patient's clinical note reflected a successful outcome following treatment for a PHF. As low levels of agreement were also observed within physician and patient groups, it is clear the definition of success varied highly across both physicians and patients. Further research is needed to elucidate physician and patient perceptions of treatment success. As outcome measurement and demonstrating the value of orthopedic treatment remain important priorities, it is important to better define and reach a consensus on what treatment success means in orthopedic medicine. ", doi="10.2196/60263", url="https://jopm.jmir.org/2025/1/e60263" } @Article{info:doi/10.2196/58128, author="McMullan, Christel and Turner, Grace and Retzer, Ameeta and Belli, Antonio and Davies, Haf Elin and Nice, Laura and Flavell, Luke and Flavell, Jackie and Calvert, Melanie", title="Testing an Electronic Patient-Reported Outcome Platform in the Context of Traumatic Brain Injury: PRiORiTy Usability Study", journal="JMIR Form Res", year="2025", month="Jan", day="23", volume="9", pages="e58128", keywords="usability study", keywords="usability", keywords="patient reported outcome", keywords="PRO", keywords="electronic patient reported outcome", keywords="ePRO", keywords="traumatic brain injury", keywords="TBI", keywords="think aloud", keywords="cognitive interviews", keywords="early warning", keywords="early detection", keywords="mobile phone", abstract="Background: Traumatic brain injury (TBI) is a significant public health issue and a leading cause of death and disability globally. Advances in clinical care have improved survival rates, leading to a growing population living with long-term effects of TBI, which can impact physical, cognitive, and emotional health. These effects often require continuous management and individualized care. Traditional paper-based assessments can be cumbersome, potentially impeding regular monitoring of patient-reported outcomes (PROs). Electronic PROs (ePROs) offer a promising alternative by enabling real-time symptom tracking, which can facilitate early identification of issues, support shared decision-making, and improve outcomes for patients with TBI. Objective: This study evaluates the usability of an ePRO platform---Atom5---for individuals with TBI. By analyzing how patients use the system to report their symptoms, the study aims to identify usability issues, assess user satisfaction, and determine the potential of Atom5 to support ongoing patient-centered care. Methods: Atom5 was customized to enable individuals with TBI to report their symptoms. Usability testing was conducted through one-on-one sessions with participants recruited from Headway UK---an organization supporting brain injury survivors. Each participant took part in cognitive interviews using with the ``Think Aloud'' method, encouraging them to verbalize their thoughts and experiences while using the platform. This approach provided qualitative insights into areas of difficulty, usability strengths, and accessibility barriers. User satisfaction was quantitatively assessed with a brief 4-item questionnaire based on the System Usability Scale. Usability outcomes were analyzed for critical and noncritical errors, focusing on user experience and overall satisfaction. Results: In total, 9 participants completed a single usability testing session using Atom5, including 4 men, 4 women, and 1 nonbinary individual; 4 participants were under 55 years old, and 6 had their TBI <10 years ago. Finally, 8 participants used an Android device. The platform included measures for anxiety (Generalized Anxiety Disorder-2 item), depression (Patient Health Questionnaire-2), posttraumatic stress disorder (Posttraumatic Stress Disorder checklist 2), and TBI-specific quality of life (Traumatic Brain Injury -- Quality of Life Short form) and a total of 26 questions. Overall, all participants were satisfied with the system, noting that it was easy to navigate and accessible despite difficulties in understanding some questions. Further, 6 participants encountered no errors, while 1 participant reported one critical error and 2 others reported one noncritical error each. The participants rated their overall satisfaction with the platform at an average score of 3.9 (SD 0.49) out of 5. Conclusions: This usability study suggests that individuals living with TBI can effectively report symptoms using the Atom5 ePRO platform, with generally high satisfaction and few usability issues, thereby enabling continuous monitoring and proactive symptom management. Future ePRO development should focus on inclusivity and adaptability to address the diverse needs of patients with TBI, ensuring these tools can effectively support a wide range of users. ", doi="10.2196/58128", url="https://formative.jmir.org/2025/1/e58128" } @Article{info:doi/10.2196/56625, author="Brunelli, Cinzia and Alfieri, Sara and Zito, Emanuela and Spelta, Marco and Arba, Laura and Lombi, Linda and Caselli, Luana and Caraceni, Augusto and Borreani, Claudia and Roli, Anna and Miceli, Rosalba and Tine', Gabriele and Zecca, Ernesto and Platania, Marco and Procopio, Giuseppe and Nicolai, Nicola and Battaglia, Luigi and Lozza, Laura and Shkodra, Morena and Massa, Giacomo and Loiacono, Daniele and Apolone, Giovanni", title="Patient Voices: Multimethod Study on the Feasibility of Implementing Electronic Patient-Reported Outcome Measures in a Comprehensive Cancer Center", journal="JMIR Cancer", year="2025", month="Jan", day="22", volume="11", pages="e56625", keywords="feasibility", keywords="oncology", keywords="patient-reported outcomes", keywords="PROMs", keywords="quality of life", keywords="mixed methods study", keywords="cancer", keywords="electronic patient-reported outcomes", keywords="patient compliance", keywords="barrier", keywords="implementation", keywords="usability scale", keywords="semistructured interview", keywords="questionnaire", keywords="clinical management", keywords="eHealth", abstract="Background: ``Patient Voices'' is a software developed to promote the systematic collection of electronic patient-reported outcome measures (ePROMs) in routine oncology clinical practice. Objective: This study aimed to assess compliance with and feasibility of the Patient Voices ePROM system and analyze patient-related barriers in an Italian comprehensive cancer center. Methods: Consecutive patients with cancer attending 3 outpatient clinics and 3 inpatient wards were screened for eligibility (adults, native speakers, and being able to fill in the ePROMs) and enrolled in a quantitative and qualitative multimethod study. Compliance, reasons for not administering the ePROMs, patients' interaction needs, and patient-perceived System Usability Scale (range 0-100) were collected; semistructured interviews were carried out in a subsample of patients. Results: From June 2020 to September 2021, a total of 435 patients were screened, 421 (96.7\%) were eligible, and 309 completed the ePROMs (309/421, 73.4\%; 95\% CI 69.8\%-77.5\%; mean age 63.3, SD 13.7 years). Organization problems and patient refusal were the main reasons for not administering the ePROMs (outpatients: 40/234, 17.1\% and inpatients: 44/201, 21.9\%). Help for tablet use was needed by 27.8\% (47/169) of outpatients and 10.7\% (15/140) of inpatients, while the support received for item interpretation was similar in the 2 groups (outpatients: 36/169, 21.3\% and inpatients: 26/140, 18.6\%). Average System Usability Scale scores indicated high usability in both groups (outpatients: mean 86.8, SD 15.8 and inpatients: mean 83.9, SD 18.8). Overall, repeated measurement compliance was 76.9\% (173/225; outpatients only). Interviewed patients showed positive attitudes toward ePROMs. However, there are barriers to implementation related to the time and cognitive effort required to complete the questionnaires. There is also skepticism about the usefulness of ePROMs in interactions with health care professionals. Conclusions: This study provides useful information for future ePROM implementation strategies, aimed at effectively supporting the routine clinical management and care of patients with cancer. In addition, these findings may be relevant to other organizations willing to systematically collect PROMs or ePROMs in their clinical routines. Trial Registration: ClinicalTrials.gov NCT03968718; https://clinicaltrials.gov/study/NCT03968718 ", doi="10.2196/56625", url="https://cancer.jmir.org/2025/1/e56625" } @Article{info:doi/10.2196/57385, author="Zhang, Lan and Bullen, Christopher and Chen, Jinsong", title="Digital Health Innovations to Catalyze the Transition to Value-Based Health Care", journal="JMIR Med Inform", year="2025", month="Jan", day="20", volume="13", pages="e57385", keywords="digital health", keywords="value-based health care", keywords="VBHC", keywords="patient-reported outcome measures", keywords="PROM", keywords="digital transformation", keywords="health care innovation", keywords="patient-centric care", keywords="health technology", keywords="patient-reported outcome", keywords="PRO", keywords="outcome measure", keywords="telehealth", keywords="telemedicine", keywords="eHealth", keywords="personalized", keywords="customized", keywords="engagement", keywords="patient-centered care", keywords="standardization", keywords="implementation", doi="10.2196/57385", url="https://medinform.jmir.org/2025/1/e57385" } @Article{info:doi/10.2196/60443, author="van den Broek-Altenburg, M. Eline and Atherly, J. Adam", title="The Paradigm Shift From Patient to Health Consumer: 20 Years of Value Assessment in Health", journal="J Med Internet Res", year="2025", month="Jan", day="10", volume="27", pages="e60443", keywords="value assessment", keywords="cost-effectiveness", keywords="quality-adjusted life-years", keywords="QALY", keywords="health consumer", keywords="health technology", keywords="value based", keywords="digital health", keywords="patient centered", keywords="preferences", keywords="health economics", doi="10.2196/60443", url="https://www.jmir.org/2025/1/e60443", url="http://www.ncbi.nlm.nih.gov/pubmed/39793021" } @Article{info:doi/10.2196/60190, author="Markowitz, Benjamin and de Sequeira, Stephanie and Najam, Adhiyat and Pritlove, Cheryl and Greenberg, Dana and Greenberg, Marley and Chan, Chee-Mei and Lakhanpal, Gurpreet and Jagadeesh, Samyukta and Mukerji, Geetha and Shulman, Rayzel and Witteman, O. Holly and Yu, H. Catherine and Booth, L. Gillian and Parsons, A. Janet and ", title="Beyond Hemoglobin A1c---Outcomes That Matter to Individuals With Type 1 Diabetes in Adopting Digital Health Interventions for Self-Management Support: Qualitative Study", journal="JMIR Diabetes", year="2024", month="Nov", day="7", volume="9", pages="e60190", keywords="T1D self-management", keywords="patient reported outcomes", keywords="patient reported outcome measures", keywords="virtual care", keywords="mobile phone", keywords="type 1 diabetes", abstract="Background: Type 1 diabetes is a demanding chronic condition that requires diligent blood glucose monitoring and timely insulin administration by patients who must integrate self-management into their daily lives. Objective: This study aimed to better understand what outcome measures are important to individuals living with type 1 diabetes (T1D) in Ontario, Canada, to help inform the development of type 1 diabetes virtual self-management Education and support (T1ME) trial. Methods: A qualitative approach was used, in which we conducted 6 focus groups with a total of 24 adult participants living with T1D (from age 18 to >65 years) in Ontario. Each focus group was semistructured in nature; participants were encouraged to talk openly about their experiences with T1D self-management and provide their perspectives on more focused topics such as technology and relationships with health care providers. Results: An interpretive analysis helped us devise a framework for our results that centered around 6 main discussion themes: (1) adapting self-management to meet evolving needs, (2) looking ``beyond A1c'' toward more personalized indicators of glycemic management, (3) the benefits and challenges of adopting new T1D technology, (4) establishing trusting relationships with diabetes care providers, (5) perceived benefits of peer support, and (6) pre-- and post--COVID-19 perspectives on virtual care. Conclusions: Our goal is for these findings to help facilitate the development of patient-oriented outcome measures that are in line with the unique needs and preferences of T1D patients in this new, more virtual landscape of clinical care, education, and self-management support. ", doi="10.2196/60190", url="https://diabetes.jmir.org/2024/1/e60190" } @Article{info:doi/10.2196/55841, author="Roberts, Anne Natasha and Pelecanos, Anita and Alexander, Kimberly and Wyld, David and Janda, Monika", title="Implementation of Patient-Reported Outcomes in a Medical Oncology Setting (the iPROMOS Study): Type II Hybrid Implementation Study", journal="J Med Internet Res", year="2024", month="Aug", day="27", volume="26", pages="e55841", keywords="implementation science", keywords="iPARIHS", keywords="clinical practice", keywords="intervention", keywords="implementation", keywords="facilitator", keywords="facilitation", keywords="patient-reported outcomes, patient-reported outcome measures", keywords="oncology", keywords="symptom", keywords="symptoms", keywords="detection", keywords="investigate", keywords="service", keywords="services", keywords="clinic", keywords="clinics", keywords="Australia", keywords="binary logistic models", keywords="regression model", keywords="regression models", keywords="patient", keywords="patients", keywords="supportive care", abstract="Background: Clinical trials have demonstrated that patient-reported outcome measures (PROMs) can improve mortality and morbidity outcomes when used in clinical practice. Objective: This study aimed to prospectively investigate the implementation of PROMs in routine oncology. Outcomes measured included improved symptom detection, clinical response to symptom information, and health service outcomes. Methods: Two of 12 eligible clinics were randomized to implement symptom PROMs in a medical oncology outpatient department in Australia. Randomization was carried out at the clinic level. Patients in control clinics continued with usual care; those in intervention clinics completed a symptom PROM at presentation. This was a pilot study investigating symptom detection, using binary logistic models, and clinical response to PROMs investigated using multiple regression models. Results: A total of 461 patient encounters were included, consisting of 242 encounters in the control and 222 in the intervention condition. Patients in these clinics most commonly had head and neck, lung, prostate, breast, or colorectal cancer and were seen in the clinic for surveillance and oral or systemic treatments for curative, metastatic, or palliative cancer care pathways. Compared with control encounters, the proportion of symptoms detected increased in intervention encounters (odds ratio 1.05, 95\% CI 0.99-1.11; P=.08). The odds of receiving supportive care, demonstrated by nonroutine allied health review, increased in the intervention compared with control encounters (odds ratio 3.54, 95\% CI 1.26-9.90; P=.02). Conclusions: Implementation of PROMs in routine care did not significantly improve symptom detection but increased the likelihood of nonroutine allied health reviews for supportive care. Larger studies are needed to investigate health service outcomes. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12618000398202; https://tinyurl.com/3cxbemy4 ", doi="10.2196/55841", url="https://www.jmir.org/2024/1/e55841", url="http://www.ncbi.nlm.nih.gov/pubmed/39190468" } @Article{info:doi/10.2196/58330, author="Sun, Jia and Ma, Liang and Miao, Xiao and Sun, Hui and Zhu, SuSu and Zhang, Ran and Fan, LeLe and Hu, TingTing", title="Current Status of Outcomes Reported by Patients With Stroke and an Analysis of Influencing Factors: Cross-Sectional Questionnaire Study", journal="JMIR Form Res", year="2024", month="Aug", day="26", volume="8", pages="e58330", keywords="stroke", keywords="patient-reported outcomes", keywords="blood lipids", keywords="influence factor", keywords="correlation analysis", keywords="nursing care", abstract="Background: Stroke is the leading cause of acquired disability and the second leading cause of death worldwide. Its rate of incidence, disability, mortality, and recurrence is high, and the patients experience various symptoms of discomfort, which not only affect their rehabilitation function but also reduce their ability to perform daily activities and their quality of life. Nowadays, with the improvement of China's medical standards, patients are increasingly attentive to their quality of life and health status. However, diagnostic techniques and effective treatments for patients with stroke are still limited but urgently required. Objective: This study aimed to evaluate the quality of life during hospitalization using a stroke patient-reported outcomes (PROs) scale and additionally to recognize potential factors and risk indicators that may impact recurrent events, facilitating early intervention measures. Methods: This is a registry-based, retrospective observational cross-sectional study on patients with stroke. A convenient sampling method was used to select various indicators of patients. The Stroke-PRO scale was then used to assess patients' conditions across physical, psychological, social, and therapeutic domains. Multiple linear regression analysis was applied to identify factors influencing stroke PROs, while correlation analysis was conducted to explore the relationship between these outcomes and blood lipid levels. Results: The mean Stroke-PRO score in this study was 4.09 (SD 0.29) points. By multiple linear regression analysis, residence, occupation, physical exercise, Barthel index, Braden scale, National Institutes of Health Stroke Scale scores at admission, and stroke type were the risk factors for reported outcomes of patients with stroke (P<.05). Correlation analysis showed that serum triglyceride, total cholesterol, and low-density lipoprotein were negatively correlated with Stroke-PRO scores in patients with stroke (P<.05), while high-density lipoprotein was positively correlated with patients with stroke (P<.05). The 95\% CI was --0.31 to --0.03 for triglyceride, 0.17-0.44 for high-density lipoprotein, --0.29 to --0.01 for cholesterol, --0.30 to --0.02 for low-density lipoprotein, and --0.12 to 0.16 for blood glucose. Conclusions: Patients with stroke have a low level of health, and their reported outcomes need to be improved. Accordingly, nursing staff should pay attention to the quality of life and blood lipid indexes of patients with stroke, actively assess their actual health status, and take early intervention measures to promote their recovery. ", doi="10.2196/58330", url="https://formative.jmir.org/2024/1/e58330" } @Article{info:doi/10.2196/51872, author="Vesinurm, M{\"a}rt and Maunula, Anna and Olli, P{\"a}ivi and Lillrank, Paul and Ij{\"a}s, Petra and Torkki, Paulus and M{\"a}kitie, Laura and Laakso, M. Sini", title="Effects of a Digital Care Pathway for Multiple Sclerosis: Observational Study", journal="JMIR Hum Factors", year="2024", month="Aug", day="7", volume="11", pages="e51872", keywords="digital care pathway", keywords="multiple sclerosis", keywords="patient satisfaction", keywords="outcome", keywords="patient reported outcome measures", keywords="resource usage", keywords="telemedicine", keywords="digital care", keywords="outpatient clinic", keywords="quality of life", keywords="quality of care", keywords="communication", keywords="caregiver", keywords="chronic condition", keywords="strategy", keywords="long-term", keywords="patient engagement", keywords="digital health service", abstract="Background: Helsinki University Hospital has developed a digital care pathway (DCP) for people with multiple sclerosis (MS) to improve the care quality. DCP was designed for especially newly diagnosed patients to support adaptation to a chronic disease. Objective: This study investigated the MS DCP user behavior and its impact on patient education-mediated changes in health care use, patient-perceived impact of MS on psychological and physical functional health, and patient satisfaction. Methods: We collected data from the service launch in March 2020 until the end of 2022 (observation period). The number of users, user logins, and their timing and messages sent were collected. The association of the DCP on health care use was studied in a case-control setting in which patients were allowed to freely select whether they wanted to use the service (DCP group n=63) or not (control group n=112). The number of physical and remote appointments either to a doctor, nurse, or other services were considered in addition to emergency department visits and inpatient days. The follow-up time was 1 year (study period). Furthermore, a subgroup of 36 patients was recruited to fill out surveys on net promoter score (NPS) at 3, 6, and 12 months, and their physical and psychological functional health (Multiple Sclerosis Impact Scale) at 0, 3, 6, and 12 months. Results: During the observation period, a total of 225 patients had the option to use the service, out of whom 79.1\% (178/225) logged into the service. On average, a user of the DCP sent 6.8 messages and logged on 7.4 times, with 72.29\% (1182/1635) of logins taking place within 1 year of initiating the service. In case-control cohorts, no statistically significant differences between the groups were found for physical doctors' appointments, remote doctors' contacts, physical nurse appointments, remote nurse contacts, emergency department visits, or inpatient days. However, the MS DCP was associated with a 2.05 (SD 0.48) visit increase in other services, within 1 year from diagnosis. In the prospective DCP-cohort, no clinically significant change was observed in the physical functional health between the 0 and 12-month marks, but psychological functional health was improved between 3 and 6 months. Patient satisfaction improved from the NPS index of 21 (favorable) at the 3-month mark to the NPS index of 63 (excellent) at the 12-month mark. Conclusions: The MS DCP has been used by a majority of the people with MS as a complementary service to regular operations, and we find high satisfaction with the service. Psychological health was enhanced during the use of MS DCP. Our results indicate that DCPs hold great promise for managing chronic conditions such as MS. Future studies should explore the potential of DCPs in different health care settings and patient subgroups. ", doi="10.2196/51872", url="https://humanfactors.jmir.org/2024/1/e51872" } @Article{info:doi/10.2196/49089, author="Perry, Betty Melissa and Taylor, Sally and Khatoon, Binish and Vercell, Amy and Faivre-Finn, Corinne and Velikova, Galina and Marsden, Antonia and Heal, Calvin and Yorke, Janelle", title="Examining the Effectiveness of Electronic Patient-Reported Outcomes in People With Cancer: Systematic Review and Meta-Analysis", journal="J Med Internet Res", year="2024", month="Jul", day="31", volume="26", pages="e49089", keywords="telemedicine", keywords="patient-reported outcome measure", keywords="neoplasms", keywords="quality of life", keywords="systematic review", keywords="meta-analysis", keywords="randomized controlled trial", abstract="Background: Electronic patient-reported outcomes (ePROs) are commonly used in oncology clinical practice and have shown benefits for patients and health resource use. Objective: The aim of this study was to compare the isolated effect of administering ePROs to patients with cancer versus a control condition. Methods: The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were followed. Randomized controlled trials evaluating ePRO interventions that aimed to improve health-related outcomes among patients with cancer were included. The primary outcome was health-related quality of life (HRQOL), and the secondary outcomes were symptoms, hospital admissions, unplanned visits, chemotherapy completion, survival, and satisfaction with care. The effect sizes of ePROs on health-related outcomes were analyzed as standardized mean differences (SMDs) with 95\% CIs using a random effects model. Results: The search identified 10,965 papers, of which 19 (0.17\%) from 15 studies were included. The meta-analysis showed an improvement in HRQOL at 3 months, measured by the Functional Assessment of Cancer Therapy--General (SMD 0.29, 95\% CI 0.19 to 0.39), and at 6 months, assessed using various HRQOL measures (SMD 0.21, 95\% CI 0.11 to 0.30). Of the 15 studies, 9 (60\%) reported a positive signal on HRQOL, with two-thirds of the studies (n=6, 67\%) including tailored patient advice and two-thirds (n=6, 67\%) using clinician alert systems. Conclusions: The meta-analysis showed an improvement in HRQOL at 6 months and in Functional Assessment of Cancer Therapy--General scores at 3 months for studies that included tailored advice and clinician alerts, suggesting that these elements may improve ePRO effectiveness. The findings will provide guidance for future use and help health care professionals choose the most suitable ePRO features for their patients. Trial Registration: PROSPERO CRD42020175007; https://tinyurl.com/5cwmy3j6 ", doi="10.2196/49089", url="https://www.jmir.org/2024/1/e49089" } @Article{info:doi/10.2196/45331, author="Zheng, Di and Shang, Yanhong and Ni, Jian and Peng, Ling and Tan, Xiaoming and Dai, Zhaoxia and Zhao, Yizhuo and Gu, Aiqin and Wang, Jiying and Song, Yanyan and Li, Xiaofeng and Zhang, Junping and Heng, Wei and Zhang, Cuiying and Liu, Chunling and Li, Hui and Du, Yingying and Xu, Jianfang and Wu, Dan and Cai, Xuwei and Meng, Rui and Dong, Xiaorong and Ruan, Yaoping and Jiang, Liyan", title="Telehealth With Comprehensive Live-Fed Real-World Data as a Patient Care Platform for Lung Cancer: Implementation and Evaluation Study", journal="JMIR Cancer", year="2024", month="Jun", day="5", volume="10", pages="e45331", keywords="telehealth", keywords="real-world data", keywords="patient engagement", keywords="lung carcinoma", keywords="patient-reported outcomes", abstract="Background: Telehealth has emerged as a popular channel for providing outpatient services in many countries. However, the majority of telehealth systems focus on operational functions and offer only a sectional patient journey at most. Experiences with incorporating longitudinal real-world medical record data into telehealth are valuable but have not been widely shared. The feasibility and usability of such a telehealth platform, with comprehensive, real-world data via a live feed, for cancer patient care are yet to be studied. Objective: The primary purpose of this study is to understand the feasibility and usability of cancer patient care using a telehealth platform with longitudinal, real-world data via a live feed as a supplement to hospital electronic medical record systems specifically from physician's perspective. Methods: A telehealth platform was constructed and launched for both physicians and patients. Real-world data were collected and curated using a comprehensive data model. Physician activities on the platform were recorded as system logs and analyzed. In February 2023, a survey was conducted among the platform's registered physicians to assess the specific areas of patient care and to quantify their before and after experiences, including the number of patients managed, time spent, dropout rate, visit rate, and follow-up data. Descriptive and inferential statistical analyses were performed on the data sets. Results: Over a period of 15 months, 16,035 unique users (13,888 patients, 1539 friends and family members, and 174 physician groups with 608 individuals) registered on the platform. More than 382,000 messages including text, reminders, and pictures were generated by physicians when communicating with patients. The survey was completed by 78 group leaders (45\% of the 174 physician groups). Of the participants, 84\% (65.6/78; SD 8.7) reported a positive experience, with efficient communication, remote supervision, quicker response to questions, adverse event prevention, more complete follow-up data, patient risk reduction, cross-organization collaboration, and a reduction in in-person visits. The majority of the participants (59/78, 76\% to 76/78, 97.4\%) estimated improvements in time spent, number of patients managed, the drop-off rate, and access to medical history, with the average ranging from 57\% to 105\%. When compared with prior platforms, responses from physicians indicated better experiences in terms of time spent, the drop-off rate, and medical history, while the number of patients managed did not significantly change. Conclusions: This study suggests that a telehealth platform, equipped with comprehensive, real-world data via a live feed, is feasible and effective for cancer patient care. It enhances inpatient management by improving time efficiencies, reducing drop-off rates, and providing easy access to medical history. Moreover, it fosters a positive experience in physician-patient interactions. ", doi="10.2196/45331", url="https://cancer.jmir.org/2024/1/e45331", url="http://www.ncbi.nlm.nih.gov/pubmed/38838304" } @Article{info:doi/10.2196/56889, author="Yanez Touzet, Alvaro and Houhou, Tatiana and Rahic, Zerina and Kolias, Angelos and Yordanov, Stefan and Anderson, B. David and Laufer, Ilya and Li, Maggie and Grahovac, Gordan and Kotter, RN Mark and Davies, M. Benjamin and ", title="Reliability of a Smartphone App to Objectively Monitor Performance Outcomes in Degenerative Cervical Myelopathy: Observational Study", journal="JMIR Form Res", year="2024", month="May", day="24", volume="8", pages="e56889", keywords="reproducibility of results", keywords="patient outcome assessment", keywords="smartphone", keywords="neurology", keywords="psychometrics", keywords="spinal cord compression", keywords="mobile phone", abstract="Background: Developing new clinical measures for degenerative cervical myelopathy (DCM) is an AO Spine RECODE-DCM Research, an international and multi-stakeholder partnership, priority. Difficulties in detecting DCM and its changes cause diagnostic and treatment delays in clinical settings and heightened costs in clinical trials due to elevated recruitment targets. Digital outcome measures can tackle these challenges due to their ability to measure disease remotely, repeatedly, and more economically. Objective: The aim of this study is to assess the reliability of the MoveMed battery of performance outcome measures. Methods: A prospective observational study in decentralized secondary care was performed in England, United Kingdom. The primary outcome was to determine the test-retest reliability of the MoveMed performance outcomes using the intraclass correlation (ICC) of agreement . The secondary outcome was to determine the measurement error of the MoveMed performance outcomes using both the SE of the mean (SEM) of agreement and the smallest detectable change (SDC) of agreement . Criteria from the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) manual were used to determine adequate reliability (ie, ICC of agreement ?0.7) and risk of bias. Disease stability was controlled using 2 minimum clinically important difference (MCID) thresholds obtained from the literature on the patient-derived modified Japanese Orthopaedic Association (p-mJOA) score, namely, MCID ?1 point and MCID ?2 points. Results: In total, 7 adults aged 59.5 (SD 12.4) years who live with DCM and possess an approved smartphone participated in the study. All tests demonstrated moderate to excellent test-retest coefficients and low measurement errors. In the MCID ?1 group, ICC of agreement values were 0.84-0.94 in the fast tap test, 0.89-0.95 in the hold test, 0.95 in the typing test, and 0.98 in the stand and walk test. SEM of agreement values were {\textpm}1 tap, {\textpm}1\%-3\% stability score points, {\textpm}0.06 keys per second, and {\textpm}10 steps per minute, respectively. SDC of agreement values were {\textpm}3 taps, {\textpm}4\%-7\% stability score points, {\textpm}0.2 keys per second, and {\textpm}27 steps per minute, respectively. In the MCID ?2 group, ICC of agreement values were 0.61-0.91, 0.75-0.77, 0.98, and 0.62, respectively; SEM of agreement values were {\textpm}1 tap, {\textpm}2\%-4\% stability score points, {\textpm}0.06 keys per second, and {\textpm}10 steps per minute, respectively; and SDC of agreement values were {\textpm}3-7 taps, {\textpm}7\%-10\% stability score points, {\textpm}0.2 keys per second, and {\textpm}27 steps per minute, respectively. Furthermore, the fast tap, hold, and typing tests obtained sufficient ratings (ICC of agreement ?0.7) in both MCID ?1 and MCID ?2 groups. No risk of bias factors from the COSMIN Risk of Bias checklist were recorded. Conclusions: The criteria from COSMIN provide ``very good'' quality evidence of the reliability of the MoveMed tests in an adult population living with DCM. ", doi="10.2196/56889", url="https://formative.jmir.org/2024/1/e56889", url="http://www.ncbi.nlm.nih.gov/pubmed/38787602" } @Article{info:doi/10.2196/52572, author="Jayasinghe, Thisakya Randi and Ahern, Susannah and Maharaj, D. Ashika and Romero, Lorena and Ruseckaite, Rasa", title="Identifying Existing Guidelines, Frameworks, Checklists, and Recommendations for Implementing Patient-Reported Outcome Measures: Protocol for a Scoping Review", journal="JMIR Res Protoc", year="2024", month="May", day="21", volume="13", pages="e52572", keywords="patient-reported outcome measures", keywords="patient-reported outcomes", keywords="quality of life", keywords="clinical quality registry", keywords="guidelines", keywords="frameworks", keywords="recommendations", keywords="scoping review", keywords="patient perspectives", keywords="patient perspective", keywords="patient-reported outcome", keywords="patient-reported", keywords="clinical setting", keywords="clinical registry", keywords="registry", keywords="systematic review", abstract="Background: Implementing patient-reported outcome measures (PROMs) to measure and evaluate health outcomes is increasing worldwide. Along with this emerging trend, it is important to identify which guidelines, frameworks, checklists, and recommendations exist, and if and how they have been used in implementing PROMs, especially in clinical quality registries (CQRs). Objective: This review aims to identify existing publications, as well as publications that discuss the application of actual guidelines, frameworks, checklists, and recommendations on PROMs' implementation for various purposes such as clinical trials, clinical practice, and CQRs. In addition, the identified publications will be used to guide the development of a new guideline for PROMs' implementation in CQRs, which is the aim of the broader project. Methods: A literature search of the databases MEDLINE, Embase, CINAHL, PsycINFO, and Cochrane Central Register of Controlled Trials will be conducted since the inception of the databases, in addition to using Google Scholar and gray literature to identify literature for the scoping review. Predefined inclusion and exclusion criteria will be used for all phases of screening. Existing publications of guidelines, frameworks, checklists, recommendations, and publications discussing the application of those methodologies for implementing PROMs in clinical trials, clinical practice, and CQRs will be included in the final review. Data relating to bibliographic information, aim, the purpose of PROMs use (clinical trial, practice, or registries), name of guideline, framework, checklist and recommendations, the rationale for development, and their purpose and implications will be extracted. Additionally, for publications of actual methodologies, aspects or domains of PROMs' implementation will be extracted. A narrative synthesis of included publications will be conducted. Results: The electronic database searches were completed in March 2024. Title and abstract screening, full-text screening, and data extraction will be completed in May 2024. The review is expected to be completed by the end of August 2024. Conclusions: The findings of this scoping review will provide evidence on any existing methodologies and tools for PROMs' implementation in clinical trials, clinical practice, and CQRs. It is anticipated that the publications will help us guide the development of a new guideline for PROMs' implementation in CQRs. Trial Registration: PROSPERO CRD42022366085; https://tinyurl.com/bdesk98x International Registered Report Identifier (IRRID): DERR1-10.2196/52572 ", doi="10.2196/52572", url="https://www.researchprotocols.org/2024/1/e52572", url="http://www.ncbi.nlm.nih.gov/pubmed/38771621" } @Article{info:doi/10.2196/49903, author="Piontek, Katharina and Nestler, Sophie and Holm, Anne and Brodersen, Brandt John and Apfelbacher, Christian", title="Content Validity and Psychometric Properties of the German Version of the Holm and Cordoba Urinary Tract Infection Score for Uncomplicated Urinary Tract Infections in Women: Protocol for a Validation Study", journal="JMIR Res Protoc", year="2024", month="May", day="7", volume="13", pages="e49903", keywords="uncomplicated urinary tract infections", keywords="patient-reported outcome measures", keywords="PROM", keywords="PROMs", keywords="content validity", keywords="psychometric properties", keywords="patient reported", keywords="validity", keywords="validation", keywords="urology", keywords="urinary", keywords="urinary tract infection", keywords="UTI", keywords="psychometric", keywords="scale", keywords="score", keywords="scoring", keywords="assessment", keywords="women's health", keywords="internal medicine", keywords="women", keywords="urinary tract infections", keywords="bacterial infection", keywords="primary care", keywords="infection", abstract="Background: Uncomplicated urinary tract infections (UTIs) in women are among the most common bacterial infections in primary care. Given the health threats related to the overuse of antibiotics, alternative options are of increasing importance. Patient-reported outcome measures are valuable tools for including the patients' perspective when evaluating the efficacy of these strategies. Aiming to identify a suitable instrument to measure the severity and bothersomeness of UTI symptoms in women, we performed a systematic review of the literature and identified the Holm and Cordoba Urinary Tract Infection Score (HCUTI), which measures the severity, bothersomeness, and impact of uncomplicated UTIs on daily activities. This instrument showed sufficient content validity but needs translation and further validation before it can be used in German research. Objective: For use in the German setting, we aim (1) to perform translation and linguistic validation of the HCUTI and (2) to evaluate content validity and psychometric properties of the German version of the HCUTI in a population of women with uncomplicated UTIs. Methods: The HCUTI will be translated and linguistically validated using the dual-panel method. This process involves a bilingual translation panel and a lay panel to check the comprehensibility of the translation. Content validity of the translated questionnaire will be assessed using cognitive interviews according to the criteria for good content validity as recommended by the COSMIN (Consensus-based Standards for the selection of health Measurement Instruments) group involving women with uncomplicated UTIs and health care professionals. Subsequent psychometric validation of the German version of the HCUTI in a population of women with uncomplicated UTIs will include the assessment of structural validity, internal consistency, test-retest reliability, construct validity, responsiveness, and interpretability. Results: Results of the translation and linguistic validation process and the results of the content validity study were obtained in September 2023 and will be published separately. Data on the psychometric properties of the German version of the HCUTI are anticipated in mid-2024. Conclusions: We expect that data from the content validity study will provide important suggestions for potential modifications of the HCUTI for use in the German setting. The final version of the questionnaire will be used for the assessment of its psychometric properties in a large population of women with uncomplicated UTIs. International Registered Report Identifier (IRRID): PRR1-10.2196/49903 ", doi="10.2196/49903", url="https://www.researchprotocols.org/2024/1/e49903", url="http://www.ncbi.nlm.nih.gov/pubmed/38713509" } @Article{info:doi/10.2196/50242, author="Stults, D. Cheryl and Mazor, M. Kathleen and Cheung, Michael and Ruo, Bernice and Li, Martina and Walker, Amanda and Saphirak, Cassandra and Vaida, Florin and Singh, Sonal and Fisher, A. Kimberly and Rosen, Rebecca and Yood, Robert and Garber, Lawrence and Longhurst, Christopher and Kallenberg, Gene and Yu, Edward and Chan, Albert and Millen, Marlene and Tai-Seale, Ming", title="Patients' Perspectives on Plans Generated During Primary Care Visits and Self-Reported Adherence at 3 Months: Data From a Randomized Trial", journal="J Particip Med", year="2024", month="Mar", day="14", volume="16", pages="e50242", keywords="primary care", keywords="survey", keywords="patient adherence", keywords="adherence", keywords="self-reported", keywords="surveys", keywords="content analysis", keywords="RCT", keywords="randomized", keywords="controlled trial", keywords="controlled trials", keywords="plan", keywords="plans", keywords="willingness", keywords="experience", keywords="experiences", keywords="attitude", keywords="attitudes", keywords="opinion", keywords="perception", keywords="perceptions", keywords="perspective", keywords="perspectives", abstract="Background: Effective primary care necessitates follow-up actions by the patient beyond the visit. Prior research suggests room for improvement in patient adherence. Objective: This study sought to understand patients' views on their primary care visits, the plans generated therein, and their self-reported adherence after 3 months. Methods: As part of a large multisite cluster randomized pragmatic trial in 3 health care organizations, patients completed 2 surveys---the first within 7 days after the index primary care visit and another 3 months later. For this analysis of secondary outcomes, we combined the results across all study participants to understand patient adherence to care plans. We recorded patient characteristics and survey responses. Cross-tabulation and chi-square statistics were used to examine bivariate associations, adjusting for multiple comparisons when appropriate. We used multivariable logistic regression to assess how patients' intention to follow, agreement, and understanding of their plans impacted their plan adherence, allowing for differences in individual characteristics. Qualitative content analysis was conducted to characterize the patient's self-reported plans and reasons for adhering (or not) to the plan 3 months later. Results: Of 2555 patients, most selected the top box option (9=definitely agree) that they felt they had a clear plan (n=2011, 78\%), agreed with the plan (n=2049, 80\%), and intended to follow the plan (n=2108, 83\%) discussed with their provider at the primary care visit. The most common elements of the plans reported included reference to exercise (n=359, 14.1\%), testing (laboratory, imaging, etc; n=328, 12.8\%), diet (n=296, 11.6\%), and initiation or adjustment of medications; (n=284, 11.1\%). Patients who strongly agreed that they had a clear plan, agreed with the plan, and intended to follow the plan were all more likely to report plan completion 3 months later (P<.001) than those providing less positive ratings. Patients who reported plans related to following up with the primary care provider (P=.008) to initiate or adjust medications (P?.001) and to have a specialist visit were more likely to report that they had completely followed the plan (P=.003). Adjusting for demographic variables, patients who indicated intent to follow their plan were more likely to follow-through 3 months later (P<.001). Patients' reasons for completely following the plan were mainly that the plan was clear (n=1114, 69.5\%), consistent with what mattered (n=1060, 66.1\%), and they were determined to carry through with the plan (n=887, 53.3\%). The most common reasons for not following the plan were lack of time (n=217, 22.8\%), having decided to try a different approach (n=105, 11\%), and the COVID-19 pandemic impacted the plan (n=105, 11\%). Conclusions: Patients' initial assessment of their plan as clear, their agreement with the plan, and their initial willingness to follow the plan were all strongly related to their self-reported completion of the plan 3 months later. Patients whose plans involved lifestyle changes were less likely to report that they had ``completely'' followed their plan. Trial Registration: ClinicalTrials.gov NCT03385512; https://clinicaltrials.gov/study/NCT03385512 International Registered Report Identifier (IRRID): RR2-10.2196/30431 ", doi="10.2196/50242", url="https://jopm.jmir.org/2024/1/e50242", url="http://www.ncbi.nlm.nih.gov/pubmed/38483458" } @Article{info:doi/10.2196/49110, author="Milton, Alyssa and Ozols A?M, Ingrid and Cassidy, Tayla and Jordan, Dana and Brown, Ellie and Arnautovska, Urska and Cook, Jim and Phung, Darren and Lloyd-Evans, Brynmor and Johnson, Sonia and Hickie, Ian and Glozier, Nick", title="Co-Production of a Flexibly Delivered Relapse Prevention Tool to Support the Self-Management of Long-Term Mental Health Conditions: Co-Design and User Testing Study", journal="JMIR Form Res", year="2024", month="Feb", day="23", volume="8", pages="e49110", keywords="self-management", keywords="serious mental illness", keywords="self-care", keywords="digital health tools", keywords="blended interventions", keywords="peer support", keywords="mobile phone", abstract="Background: Supported self-management interventions, which assist individuals in actively understanding and managing their own health conditions, have a robust evidence base for chronic physical illnesses, such as diabetes, but have been underused for long-term mental health conditions. Objective: This study aims to co-design and user test a mental health supported self-management intervention, My Personal Recovery Plan (MyPREP), that could be flexibly delivered via digital and traditional paper-based mediums. Methods: This study adopted a participatory design, user testing, and rapid prototyping methodologies, guided by 2 frameworks: the 2021 Medical Research Council framework for complex interventions and an Australian co-production framework. Participants were aged ?18 years, self-identified as having a lived experience of using mental health services or working in a peer support role, and possessed English proficiency. The co-design and user testing processes involved a first round with 6 participants, focusing on adapting a self-management resource used in a large-scale randomized controlled trial in the United Kingdom, followed by a second round with 4 new participants for user testing the co-designed digital version. A final round for gathering qualitative feedback from 6 peer support workers was conducted. Data analysis involved transcription, coding, and thematic interpretation as well as the calculation of usability scores using the System Usability Scale. Results: The key themes identified during the co-design and user testing sessions were related to (1) the need for self-management tools to be flexible and well-integrated into mental health services, (2) the importance of language and how language preferences vary among individuals, (3) the need for self-management interventions to have the option of being supported when delivered in services, and (4) the potential of digitization to allow for a greater customization of self-management tools and the development of features based on individuals' unique preferences and needs. The MyPREP paper version received a total usability score of 71, indicating C+ or good usability, whereas the digital version received a total usability score of 85.63, indicating A or excellent usability. Conclusions: There are international calls for mental health services to promote a culture of self-management, with supported self-management interventions being routinely offered. The resulting co-designed prototype of the Australian version of the self-management intervention MyPREP provides an avenue for supporting self-management in practice in a flexible manner. Involving end users, such as consumers and peer workers, from the beginning is vital to address their need for personalized and customized interventions and their choice in how interventions are delivered. Further implementation-effectiveness piloting of MyPREP in real-world mental health service settings is a critical next step. ", doi="10.2196/49110", url="https://formative.jmir.org/2024/1/e49110", url="http://www.ncbi.nlm.nih.gov/pubmed/38393768" } @Article{info:doi/10.2196/46909, author="Medich, Melissa and Cannedy, L. Shay and Hoffmann, C. Lauren and Chinchilla, Y. Melissa and Pila, M. Jose and Chassman, A. Stephanie and Calderon, A. Ronald and Young, S. Alexander", title="Clinician and Patient Perspectives on the Use of Passive Mobile Monitoring and Self-Tracking for Patients With Serious Mental Illness: User-Centered Approach", journal="JMIR Hum Factors", year="2023", month="Oct", day="24", volume="10", pages="e46909", keywords="serious mental illness", keywords="mobile health", keywords="mental health", keywords="passive sensing", keywords="health informatics", keywords="behavior", keywords="self-tracking", keywords="monitoring", keywords="mental illness", keywords="prevention", keywords="acceptability", keywords="usability", keywords="usefulness", keywords="application", keywords="tool", keywords="management", keywords="mobile phone", abstract="Background: Early intervention in mental health crises can prevent negative outcomes. A promising new direction is remote mental health monitoring using smartphone technology to passively collect data from individuals to rapidly detect the worsening of serious mental illness (SMI). This technology may benefit patients with SMI, but little is known about health IT acceptability among this population or their mental health clinicians. Objective: We used the Health Information Technology Acceptability Model to analyze the acceptability and usability of passive mobile monitoring and self-tracking among patients with serious mental illness and their mental health clinicians. Methods: Data collection took place between December 2020 and June 2021 in 1 Veterans Administration health care system. Interviews with mental health clinicians (n=16) assessed the acceptability of mobile sensing, its usefulness as a tool to improve clinical assessment and care, and recommendations for program refinements. Focus groups with patients with SMI (n=3 groups) and individual usability tests (n=8) elucidated patient attitudes about engaging in health IT and perceptions of its usefulness as a tool for self-tracking and improving mental health assessments. Results: Clinicians discussed the utility of web-based data dashboards to monitor patients with SMI health behaviors and receiving alerts about their worsening health. Potential benefits included improving clinical care, capturing behaviors patients do not self-report, watching trends, and receiving alerts. Clinicians' concerns included increased workloads tied to dashboard data review, lack of experience using health IT in clinical care, and how SMI patients' associated paranoia and financial instability would impact patient uptake. Despite concerns, all mental health clinicians stated that they would recommend it. Almost all patients with SMI were receptive to using smartphone dashboards for self-monitoring and having behavioral change alerts sent to their mental health clinicians. They found the mobile app easy to navigate and dashboards easy to find and understand. Patient concerns centered on privacy and ``government tracking,'' and their phone's battery life and data plans. Despite concerns, most reported that they would use it. Conclusions: Many people with SMI would like to have mobile informatics tools that can support their illness and recovery. Similar to other populations (eg, older adults, people experiencing homelessness) this population presents challenges to adoption and implementation. Health care organizations will need to provide resources to address these and support successful illness management. Clinicians are supportive of technological approaches, with adapting informatics data into their workflow as the primary challenge. Despite clear challenges, technological developments are increasingly designed to be acceptable to patients. The research development--clinical deployment gap must be addressed by health care systems, similar to computerized cognitive training. It will ensure clinicians operate at the top of their skill set and are not overwhelmed by administrative tasks, data summarization, or reviewing data that do not indicate a need for intervention. International Registered Report Identifier (IRRID): RR2-10.2196/39010 ", doi="10.2196/46909", url="https://humanfactors.jmir.org/2023/1/e46909", url="http://www.ncbi.nlm.nih.gov/pubmed/37874639" } @Article{info:doi/10.2196/48386, author="da Silva Lopes, Manuel Andr{\'e} and Colomer-Lahiguera, Sara and Darnac, C{\'e}lia and Giacomini, Stellio and Bugeia, S{\'e}bastien and Gutknecht, Garance and Spurrier-Bernard, Gilliosa and Cuendet, Michel and Muet, Fanny and Aedo-Lopez, Veronica and Mederos, Nuria and Michielin, Olivier and Addeo, Alfredo and Latifyan, Sofiya and Eicher, Manuela", title="Testing a Model of Care for Patients on Immune Checkpoint Inhibitors Based on Electronic Patient-Reported Outcomes: Protocol for a Randomized Phase II Controlled Trial", journal="JMIR Res Protoc", year="2023", month="Oct", day="18", volume="12", pages="e48386", keywords="patient-reported outcomes", keywords="model of care", keywords="immune-related adverse events", keywords="remote symptom management", keywords="self-management support", keywords="self-efficacy", keywords="health-related quality of life", keywords="eHealth", keywords="telehealth", keywords="support", keywords="self-management", keywords="symptom", keywords="monitoring", keywords="cancer", keywords="electronic health record", keywords="immune", keywords="detection", keywords="questionnaire", keywords="treatment", abstract="Background: Management of severe symptomatic immune-related adverse events (IrAEs) related to immune checkpoint inhibitors (ICIs) can be facilitated by timely detection. As patients face a heterogeneous set of symptoms outside the clinical setting, remotely monitoring and assessing symptoms by using patient-reported outcomes (PROs) may result in shorter delays between symptom onset and clinician detection. Objective: We assess the effect of a model of care for remote patient monitoring and symptom management based on PRO data on the time to detection of symptomatic IrAEs from symptom onset. The secondary objectives are to assess its effects on the time between symptomatic IrAE detection and intervention, IrAE grade (severity), health-related quality of life, self-efficacy, and overall survival at 6 months. Methods: For this study, 198 patients with cancer receiving systemic treatment comprising ICIs exclusively will be recruited from 2 Swiss university hospitals. Patients are randomized (1:1) to a digital model of care (intervention) or usual care (control group). Patients are enrolled for 6 months, and they use an electronic app to complete weekly Functional Assessment of Cancer Therapy-General questionnaire and PROMIS (PROs Measurement Information System) Self-Efficacy to Manage Symptoms questionnaires. The intervention patient group completes a standard set of 37 items in a weekly PROs version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) questionnaire, and active symptoms are reassessed daily for the first 3 months by using a modified 24-hour recall period. Patients can add items from the full PRO-CTCAE item library to their questionnaire. Nurses call patients in the event of new or worsening symptoms and manage them by using a standardized triage algorithm based on the United Kingdom Oncology Nursing Society 24-hour triage tool. This algorithm provides guidance on deciding if patients should receive in-person care, if monitoring should be increased, or if self-management education should be reinforced. Results: The Institut Suisse de Recherche Exp{\'e}rimentale sur le Cancer Foundation and Kaiku Health Ltd funded this study. Active recruitment began since November 2021 and is projected to conclude in November 2023. Trial results are expected to be published in the first quarter of 2024 and will be disseminated through publications submitted at international scientific conferences. Conclusions: This trial is among the first trials to use PRO data to directly influence routine care of patients treated with ICIs and addresses some limitations in previous studies. This trial collects a wider spectrum of self-reported symptom data daily. There are some methodological limitations brought by changes in evolving treatment standards for patients with cancer. This trial's results could entail further academic discussions on the challenges of diagnosing and managing symptoms associated with treatment remotely by providing further insights into the burden symptoms represent to patients and highlight the complexity of care procedures involved in managing symptomatic IrAEs. Trial Registration: ClinicalTrials.gov NCT05530187; https://www.clinicaltrials.gov/study/NCT05530187 International Registered Report Identifier (IRRID): DERR1-10.2196/48386 ", doi="10.2196/48386", url="https://www.researchprotocols.org/2023/1/e48386", url="http://www.ncbi.nlm.nih.gov/pubmed/37851498" } @Article{info:doi/10.2196/24319, author="Lamontagne, Marie-Eve and Gagnon, Marie-Pierre and Perreault, Kadija and Gauthier, V{\'e}ronique", title="Evaluating the Acceptability, Feasibility, and Outcomes of Two Methods Involving Patients With Disability in Developing Clinical Guidelines: Crossover Pilot Study", journal="J Particip Med", year="2021", month="Nov", day="23", volume="13", number="3", pages="e24319", keywords="clinical practice guidelines", keywords="patient participation", keywords="traumatic brain injuries", keywords="clinical practice", keywords="patient", keywords="participation", keywords="brain injury", keywords="traumatic", abstract="Background: Engaging patients and the public in clinical practice guideline (CPG) development is believed to contribute significantly to guideline quality, but the advantages of the various co-design strategies have not been empirically compared, making it difficult to choose one strategy over another. Objective: This pilot study aims to document the acceptability, feasibility, and outcomes of 2 methods of involving patients in outlining CPG. Methods: A single-blind crossover pragmatic study was performed with patients with traumatic brain injury. The patients experimented with 2 alternative methods of producing clinical practice recommendations (ie, a discussion group and a wiki). The participants rated the acceptability of the 2 methods, and feasibility was assessed using indicators, such as the number of participants who completed the 2 methods and the number of support interventions required. Experts, blinded to the method, independently rated the participants' outcome recommendations for clarity, accuracy, appropriateness, and usefulness. Results: We recruited 20 participants, and 16 completed the study. The acceptability of the 2 methods showed little variation, with qualitative comments expressing a slight preference for the social nature of focus groups. Thus, both methods of involving patients in CPG development appeared feasible, and the experts' opinions of the adapted recommendations were both positive, although the recommendations produced through focus groups were deemed more relevant to support clinical practice. Conclusions: Our results confirm the acceptability and feasibility of focus groups and wikis to allow patients with traumatic brain injury to participate in clinical practice guideline production. This study contributes to the scientific literature by suggesting that the 2 methods were acceptable, feasible, and produced positive outcomes. Trial Registration: ClinicalTrials.gov NCT02023138; https://clinicaltrials.gov/ct2/show/NCT02023138 ", doi="10.2196/24319", url="https://jopm.jmir.org/2021/3/e24319/", url="http://www.ncbi.nlm.nih.gov/pubmed/34812733" } @Article{info:doi/10.2196/29945, author="Cartujano-Barrera, Francisco and Azogini, Chiamaka and McIntosh, Scott and Bansal-Travers, Maansi and Ossip, J. Deborah and Cupertino, Paula Ana", title="Developing Graphic Messages for Vaping Prevention Among Black and Latino Adolescents: Participatory Research Approach", journal="J Particip Med", year="2021", month="Nov", day="23", volume="13", number="3", pages="e29945", keywords="vaping", keywords="electronic cigarettes", keywords="adolescents", keywords="Latino", keywords="Black", abstract="Background: As an important transition stage in human development, adolescence is a critical window for vaping prevention. There is a substantial gap in communication research on vaping prevention among racial and ethnic minority groups. Their representation is essential to develop, implement, and disseminate innovative and effective interventions for vaping prevention. Objective: The aim of this study is to describe the participatory research (PR) procedures used with Black and Latino adolescents to develop culturally and linguistically appropriate graphic messages for vaping prevention. Methods: This PR study used a qualitative, user-centered design method. We conducted a series of focus groups with 16 Black and Latino adolescents to develop culturally and linguistically appropriate graphic messages for vaping prevention. The biobehavioral model of nicotine addiction provided a framework for the development of the graphic messages. Participants met 4 times to provide iterative feedback on the graphic messages until they reached a consensus on overall quality and content. Results: At baseline, the participants' mean age was 15.4 years (SD 1.4). Of the participants, 50\% (8/16) were female, 88\% (14/16) were heterosexual, 56\% (9/16) were Black/African American, and 44\% (7/16) were Hispanic/Latino. A total of 12 of the 16 participants (75\%) chose to participate in the English sessions. Participants decided to create four types of graphic messages: (1) financial reward, (2) health reward, (3) social norms, and (4) self-efficacy. Meeting 4 times with the 4 groups provided sufficient opportunities for iterative feedback on the graphic messages to reach a consensus on overall quality and content. Conclusions: It is feasible and practical to build PR among Black and Latino adolescents focused on vaping prevention. Adolescents added innovation and creativity to the development of culturally and linguistically appropriate graphic messages for vaping prevention. Appropriate staffing, funding, and approaches are key for successful PR efforts among Black and Latino adolescents. Future research is needed to evaluate the impact of the graphic messages on vaping prevention. ", doi="10.2196/29945", url="https://jopm.jmir.org/2021/3/e29945", url="http://www.ncbi.nlm.nih.gov/pubmed/34812734" } @Article{info:doi/10.2196/19475, author="Lapadat, Laura and Balram, Anusha and Cheek, Joanna and Canas, Eugenia and Paquette, Andrea and and Michalak, E. Erin", title="Engaging Youth in the Bipolar Youth Action Project: Community-Based Participatory Research", journal="J Participat Med", year="2020", month="Sep", day="10", volume="12", number="3", pages="e19475", keywords="community-based participatory research", keywords="bipolar disorder", keywords="adolescent", keywords="young adult", keywords="youth", keywords="participatory research", abstract="Background: We describe the methodological dimensions of community-based participatory research through a description of study design, youth engagement, and methods/processes in the cocreation of knowledge within a Canadian study, the Bipolar Youth Action Project. This collaborative partnership---carried out by a team composed of academic, community, and youth partners---was designed to investigate self-management and wellness strategies for young adults living with bipolar disorder. Objective: The aim is to describe the opportunities and challenges of this collaboration and to reflect upon the process of involving youth with bipolar disorder in health research that concerns them, and share lessons learned. Methods: The project was conducted in multiple phases over 2 years: (1) grant-writing, with youth contributing to the process; (2) recruitment, in which 12 youth were selected and trained to help shape and conduct two research forums; (3) the first research forum, where more youth were consulted about the strategies they apply to stay well (self-management strategies); (4) data analysis of Forum I findings; (5) research Forum II, which consulted youth with bipolar disorder about knowledge translation of Forum I findings; and (6) data analysis of Forum II findings. Youth peer researchers with bipolar disorder were involved in a significant capacity at every stage in the process. Results: Of the initial 12 youth peer researchers, 7 remained on the project from the recruitment phase until the project ended. They collaborated in the creation of two youth research forums that consulted youth with bipolar disorder on their self-management strategies. Conclusions: This article shares what was learned from the process of partnering with youth with bipolar disorder in a community-based participatory research study. ", doi="10.2196/19475", url="http://jopm.jmir.org/2020/3/e19475/", url="http://www.ncbi.nlm.nih.gov/pubmed/33044943" } @Article{info:doi/10.2196/15447, author="Meinlschmidt, Gunther and Berdajs, Denis and Moser-Starck, Roger and Frick, Alexander and Gross, Sebastian and Schurr, Ulrich and Eckstein, S. Friedrich and Hunziker, Sabina and Schaefert, Rainer", title="Perceived Need for Psychosocial Support After Aortic Dissection: Cross-Sectional Survey", journal="J Participat Med", year="2020", month="Jul", day="6", volume="12", number="3", pages="e15447", keywords="aortic dissection", keywords="patient involvement", keywords="psychosocial support", keywords="psychosomatic", keywords="psychotherapy", keywords="treatment need", abstract="Background: The gold standard management of aortic dissection, a life-threatening condition, includes multidisciplinary approaches. Although mental distress following aortic dissection is common, evidence-based psychosocial interventions for aortic dissection survivors are lacking. Objective: The aim of this study is to identify the perceived psychosocial needs of aortic dissection survivors by surveying patients, their relatives, and health professionals to inform the development of such interventions. Methods: This study used a cross-sectional survey and collected responses from 41 participants (27 patients with aortic dissection, 8 relatives of patients with aortic dissection, and 6 health professionals) on key topics, types of interventions, best timing, anticipated success, and the intended effects and side effects of psychosocial interventions after aortic dissection. Results: The principal intervention topics were ``changes in everyday life'' (28/41, 68\%, 95\% CI 54.5\%-82.9\%), ``anxiety'' (25/41, 61\%, 95\% CI 46.2\%-76.2\%), ``uncertainty'' (24/41, 59\%, 95\% CI 42.9\%-73.2\%), ``tension/distress'' (24/41, 59\%, 95\% CI 43.9\%-73.8\%), and ``trust in the body'' (21/41, 51\%, 95\% CI 35.9\%-67.5\%). The most commonly indicated intervention types were ``family/relative therapy'' (21/41, 51\%, 95\% CI 35\%-65.9\%) and ``anxiety treatment'' (21/41, 51\%, 95\% CI 35\%-67.5\%). The most recommended intervention timing was ``during inpatient rehabilitation'' (26/41, 63\%, 95\% CI 47.6\%-77.5\%) followed by ``shortly after inpatient rehabilitation'' (20/41, 49\%, 95\% CI 32.4\%-65\%). More than 95\% (39/41) of respondents anticipated a benefit from psychosocial interventions following aortic dissection dissection, expecting a probable improvement in 68.6\% (95\% CI 61.4\%-76.2\%) of aortic dissection survivors, a worse outcome for 5\% (95\% CI 2.9\%-7.9\%), and that 6\% (95\% CI 1.8\%-10.4\%) would have negative side effects due to such interventions. Conclusions: Our findings highlight a substantial need for psychosocial interventions in aortic dissection survivors and indicate that such interventions would be a success. They provide a basis for the development and evaluation of interventions as part of state-of-the-art aortic dissection management. ", doi="10.2196/15447", url="https://jopm.jmir.org/2020/3/e15447" } @Article{info:doi/10.2196/15174, author="Masterson, Yamini and Brady, Erin and Miller, Andrew", title="Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study", journal="J Participat Med", year="2019", month="Nov", day="12", volume="11", number="4", pages="e15174", keywords="chronic illness", keywords="brain injury", keywords="disease management", keywords="mental health recovery", keywords="quality of life", keywords="data collection", keywords="personal health records", keywords="patient generated health data", abstract="Background: The effects of brain injury, structural damage, or the physiological disruption of brain function last far beyond initial clinical treatment. Self-tracking and management technologies have the potential to help individuals experiencing brain injury in their personal recovery---helping them to function at their best despite ongoing symptoms of illness. However, current self-tracking technologies may be unsuited for measuring the interconnected, nonlinear ways in which brain injury manifests. Objective: This study aimed to investigate (1) the current informational practices and sensemaking processes used by postacute brain injury patients during personal recovery and (2) the potential role of quality-of-life instruments in improving patient awareness of brain injury recovery, advocacy, and involvement in care used outside the clinical context. Our objective was to explore the means of improving awareness through reflection that leads to compensatory strategies by anticipating or recognizing the occurrence of a problem caused by impairment. Methods: We conducted a qualitative study and used essentialist or realist thematic analysis to analyze the data collected through semistructured interviews and questionnaires, 2 weeks of structured data collection using brain injury--specific health-related quality of life instrument, quality of life after brain injury (QoLIBRI), and final interviews. Results: Informational practices of people with brain injury involve data collection, data synthesis, and obtaining and applying the insights to their lifestyles. Participants collected data through structured tools such as spreadsheets and wearable devices but switched to unstructured tools such as journals and blogs as changes in overall progress became more qualitative in nature. Although data collection helped participants summarize their progress better, the lack of conceptual understanding made it challenging to know what to monitor or communicate with clinicians. QoLIBRI served as an education tool in this scenario but was inadequate in facilitating reflection and sensemaking. Conclusions: Individuals with postacute brain injury found the lack of conceptual understanding of recovery and tools for making sense of their health data as major impediments for tracking and being aware of their personal recovery. There is an urgent need for a better framework for recovery and a process model for choosing patient-generated health data tools that focus on the holistic nature of recovery and improve the understanding of brain injury for all stakeholders involved throughout recovery. ", doi="10.2196/15174", url="https://jopm.jmir.org/2019/4/e15174" }