Dataset Information

Patient preferences for visualization of longitudinal patient-reported outcomes data.

ABSTRACT: OBJECTIVE:The study sought to design symptom reports of longitudinal patient-reported outcomes data that are understandable and meaningful to end users. MATERIALS AND METHODS:We completed a 2-phase iterative design and evaluation process. In phase I, we developed symptom reports and refined them according to expert input. End users then completed a survey containing demographics, a measure of health literacy, and items to assess visualization preferences and comprehension of reports. We then collected participants' perspectives on reports through semistructured interviews and modified them accordingly. In phase II, refined reports were evaluated in a survey that included demographics, validated measures of health and graph literacy, and items to assess preferences and comprehension of reports. Surveys were administered using a think-aloud protocol. RESULTS:Fifty-five English- and Spanish-speaking end users, 89.1% of whom had limited health literacy, participated. In phase I, experts recommended improvements and 20 end users evaluated reports. From the feedback received, we added emojis, changed date and font formats, and simplified the y-axis scale of reports. In phase II, 35 end users evaluated refined designs, of whom 94.3% preferred reports with emojis, the favorite being a bar graph combined with emojis, which also promoted comprehension. In both phases, participants literally interpreted reports and provided suggestions for future visualizations. CONCLUSIONS:A bar graph combined with emojis was participants' preferred format and the one that promoted comprehension. Target end users must be included in visualization design to identify literal interpretations of images and ensure final products are meaningful.

SUBMITTER: Stonbraker S

PROVIDER: S-EPMC7025335 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

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Patient preferences for visualization of longitudinal patient-reported outcomes data.

Stonbraker Samantha S Porras Tiffany T Schnall Rebecca R

Journal of the American Medical Informatics Association : JAMIA 20200201 2

<h4>Objective</h4>The study sought to design symptom reports of longitudinal patient-reported outcomes data that are understandable and meaningful to end users.<h4>Materials and methods</h4>We completed a 2-phase iterative design and evaluation process. In phase I, we developed symptom reports and refined them according to expert input. End users then completed a survey containing demographics, a measure of health literacy, and items to assess visualization preferences and comprehension of repor ...[more]

PMID: 31670816

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Project description:BackgroundHigh-value cancer care balances effective treatment with preservation of quality of life. Chemotherapy is known to affect patients' physical and psychological well-being negatively. Patient-reported outcomes (PROs) provide a means to monitor declines in a patients' well-being during treatment.MethodsWe identified 741 oncology patients undergoing chemotherapy in our electronic health record (EHR) system who completed Patient-Reported Outcomes Measurement Information System (PROMIS) surveys during treatment at a comprehensive cancer center, 2013-2018. PROMIS surveys were collected before, during, and after chemotherapy treatment. Linear mixed-effects models were performed to identify predictors of physical and mental health scores over time. A k-mean cluster analysis was used to group patient PROMIS score trajectories.ResultsMean global physical health (GPH) scores were 48.7 (SD 9.3), 47.7 (8.8), and 48.6 (8.9) and global mental health (GMH) scores were 50.4 (8.6), 49.5 (8.8), and 50.6 (9.1) before, during, and after chemotherapy, respectively. Asian race, Hispanic ethnicity, public insurance, anxiety/depression, stage III cancer, and palliative care were predictors of GPH and GMH decline. The treatment time period was also a predictor of both GPH and GMH decline relative to pre-treatment. Trajectory clustering identified four distinct PRO clusters associated with chemotherapy treatment.ConclusionsPatient-reported outcomes are increasingly used to help monitor cancer treatment and are now a part of care reimbursement. This study leveraged routinely collected PROMIS surveys linked to EHRs to identify novel patient trajectories of physical and mental well-being in oncology patients undergoing chemotherapy and potential predictors. Supportive care interventions in high-risk populations identified by our study may optimize resource deployment.Novelty and impactThis study leveraged routinely collected patient-reported outcome (PROMIS) surveys linked to electronic health records to characterize oncology patients' quality of life during chemotherapy. Important clinical and demographic predictors of declines in quality of life were identified and four novel trajectories to guide personalized interventions and support. This work highlights the utility of monitoring patient-reported outcomes not only before and after, but during chemotherapy to help advert adverse patient outcomes and improve treatment adherence.

Project description:BackgroundPatients with hematological cancer who experience relapse or progressive disease often face yet another line of treatment and continued mortality risk that could increase their physical and emotional trauma and worsen their health-related quality of life. Healthcare professionals who use patient-reported outcomes to identify who will have specific sensitivities in particular health-related quality of life domains may be able to individualize and target treatment and supportive care, both features of precision medicine. Here, in a cohort of patients with relapsed or progressive hematological cancer, we sought to identify health-related quality of life domains in which they experienced deterioration after relapse treatment and to investigate health-related quality of life patterns.MethodPatients were recruited in connection with a precision medicine study at the Department of Hematology, Aalborg University Hospital. They completed the European Organization for Research and Treatment of Cancer questionnaire and the Hospital Anxiety and Depression Scale at baseline and at 3, 6, 9, and 12 months after the relapse diagnosis or progressive cancer. Modes of completion were electronically or on paper. Clinically relevant changes from baseline to 12 months were interpreted according to Cocks' guidelines. We quantified the number of patients with moderate or severe symptoms and functional problems and the number who experienced improvements or deterioration from baseline to 12 months.ResultsA total of 104 patients were included, of whom 90 (87%) completed baseline questionnaires and 50 (56%) completed the 12-month assessments. The three symptoms that patients most often reported as deteriorating were fatigue (18%), insomnia (18%), and diarrhea (18%). The three functions that patients most often reported as deteriorating were role (16%) and emotional (16%) and cognitive (16%) functioning.ConclusionIn this study, patient-reported outcome data were useful for identifying negatively affected health-related quality of life domains in patients with relapsed or progressive hematological cancer. We identified patients experiencing deterioration in health-related quality of life during treatment and characterized a potential role for patient-reported outcomes in precision medicine to target treatment and supportive care in this patient group.

Dataset Information

Patient preferences for visualization of longitudinal patient-reported outcomes data.

Publications

Patient preferences for visualization of longitudinal patient-reported outcomes data.

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