The Rationale for Collecting Patient-Reported Symptoms during Routine Chemotherapy

2014 ◽  
pp. 161-165 ◽  
Author(s):  
Ethan Basch
Keyword(s):  
Clinical Practice ◽  
Symptom Control ◽  
Data Interpretation ◽  
Data Representation ◽  
Routine Care ◽  
Self Report ◽  
Multiple Systems ◽  
Patient Reported ◽  
American Society ◽  
Reported Data

Patient-reported outcomes (PROs) such as symptoms and functional status are commonly measured in clinical trials. There is increasing interest to integrate PROs into routine clinical practice, for example during chemotherapy or postoperatively. There are several rationales for this. First, patient self-reporting improves patient-clinic communication, symptom detection, and symptom control. Second, patient-reported data may be used for quality assessment. Third, aggregated patient-reported data can be informative in comparative-effectiveness research (CER). Of particular interest is an approach that employs electronic collection of PROs with interfaces to the electronic health record (EHR) and clinician alerts for concerning symptoms. Multiple systems have been developed in oncology with these characteristics. Barriers to implementation exist, such as cost, logistics, EHR interfacing, data representation, and data interpretation, but have been largely overcome. Missing data remain a concern, but backup data collection strategies can bring self-report compliance rates up to about 85% in unselected routine care patients with advanced cancers. Overall, including patient self-reporting in routine care enhances quality of care and patient satisfaction, and is expected to become more common in the future. American Society for Clinical Oncology (ASCO) has several ongoing initiatives to develop standards and clinical practice tools in this area.

scholarly journals Use of In-Game Rewards to Motivate Daily Self-Report Compliance: Randomized Controlled Trial (Preprint)

2018 ◽  
Author(s):  
Sara Taylor ◽  
Craig Ferguson ◽  
Fengjiao Peng ◽  
Magdalena Schoeneich ◽  
Rosalind W Picard
Keyword(s):  
Controlled Trial ◽  
Daily Diary ◽  
Self Report ◽  
Completion Rates ◽  
Daily Diaries ◽  
Disease Symptoms ◽  
System Usability Scale ◽  
Significant Difference ◽  
Patient Reported ◽  
Reported Data

BACKGROUND Encouraging individuals to report daily information such as unpleasant disease symptoms, daily activities and behaviors, or aspects of their physical and emotional state is difficult but necessary for many studies and clinical trials that rely on patient-reported data as primary outcomes. Use of paper diaries is the traditional method of completing daily diaries, but digital surveys are becoming the new standard because of their increased compliance; however, they still fall short of desired compliance levels. OBJECTIVE Mobile games using in-game rewards offer the opportunity to increase compliance above the rates of digital diaries and paper diaries. We conducted a 5-week randomized control trial to compare the completion rates of a daily diary across 3 conditions: a paper-based participant-reported outcome diary (Paper PRO), an electronic-based participant-reported outcome diary (ePRO), and a novel ePRO diary with in-game rewards (Game-Motivated ePRO). METHODS We developed a novel mobile game that is a combination of the idle and pet collection genres to reward individuals who complete a daily diary with an in-game reward. Overall, 197 individuals aged 6 to 24 years (male: 100 and female: 97) were enrolled in a 5-week study after being randomized into 1 of the 3 methods of daily diary completion. Moreover, 157 participants (male: 84 and female: 69) completed at least one diary and were subsequently included in analysis of compliance rates. RESULTS We observed a significant difference (F2,124=6.341; P=.002) in compliance to filling out daily diaries, with the Game-Motivated ePRO group having the highest compliance (mean completion 86.4%, SD 19.6%), followed by the ePRO group (mean completion 77.7%, SD 24.1%), and finally, the Paper PRO group (mean completion 70.6%, SD 23.4%). The Game-Motivated ePRO (P=.002) significantly improved compliance rates above the Paper PRO. In addition, the Game-Motivated ePRO resulted in higher compliance rates than the rates of ePRO alone (P=.09). Equally important, even though we observed significant differences in completion of daily diaries between groups, we did not observe any statistically significant differences in association between the responses to a daily mood question and study group, the average diary completion time (P=.52), or the System Usability Scale score (P=.88). CONCLUSIONS The Game-Motivated ePRO system encouraged individuals to complete the daily diaries above the compliance rates of the Paper PRO and ePRO without altering the participants’ responses. CLINICALTRIAL ClinicalTrials.gov NCT03738254; http://clinicaltrials.gov/ct2/show/NCT03738254 (Archived by WebCite at http://www.webcitation.org/74T1p8u52)

scholarly journals Evaluating the Quality of Supportive Oncology Using Patient-Reported Data

2014 ◽  
Vol 10 (4) ◽  
pp. e223-e230 ◽  
Author(s):  
Sydney M. Dy ◽  
Anne M. Walling ◽  
Jennifer W. Mack ◽  
Jennifer L. Malin ◽  
Philip Pantoja ◽  
...  
Keyword(s):  
Quality Of Care ◽  
Medical Record ◽  
Self Report ◽  
Medical Record Data ◽  
Patient Reported ◽  
Record Data ◽  
Supportive Oncology ◽  
Reported Data

Quality of care for symptoms measured using patient self-report was higher than when including medical record data.

Feasibility of long-term patient reporting of toxicities from home via the internet during routine chemotherapy.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 6575-6575
Author(s):  
Timothy J Judson ◽  
Antonia V Bennett ◽  
Lauren J. Rogak ◽  
Laura Sit ◽  
Allison Barz ◽  
...  
Keyword(s):  
Performance Status ◽  
A Priori ◽  
Routine Care ◽  
Self Report ◽  
Cancer Center ◽  
Patient Centered ◽  
Technical Problems ◽  
Patient Reported ◽  
Centered Care

6575 Background: Patient-reported outcomes are increasingly used in routine outpatient cancer care to guide clinical decisions and enhance communication. Prior evidence suggests good patient compliance with reporting at scheduled clinic visits, but there is limited evidence about compliance with long-term longitudinal reporting between visits. Methods: Patients receiving chemotherapy for lung, gynecologic, genitourinary or breast cancer at a tertiary cancer center, with access to a home computer and prior email experience, were asked to self-report seven symptomatic toxicities via the web between visits. Email reminders were sent to participants weekly; patient-reported high-grade toxicities triggered email alerts to nurses; printed reports were provided to oncologists at visits. A priori threshold criteria were set to determine if this data collection approach merits further development, based on monthly compliance rates (75% or more participants reporting at least once per month on average) and weekly compliance rates (60% at least once per week). Results: Between September 2006 and November 2010, 286 patients were enrolled (64% female, 88% white, median age 58). Mean follow-up was 34 weeks (range 2-214). On average, monthly compliance was 83% and weekly compliance was 62%, without attrition until the month prior to death. Greater compliance was associated with older age and higher education, but not performance status. Compliance was greatest during the initial 12 weeks. Symptomatic illness and technical problems were rarely barriers to compliance. Conclusions: Monthly compliance with sustained home web reporting is high, even with only weekly email reminders, but weekly compliance is lower, warranting strategies to enhance compliance in routine care settings. Barriers are likely surmountable through further use of reminder systems and questionnaire access via portable media. Between-visit symptom reporting may lead to more patient-centered care, enhanced quality, and improved patient satisfaction. Clinical trial information: NCT00578006.

A systematic review of patient-reported outcome measurement (PROM) and provider assessment in mental health: goals, implementation, setting, measurement characteristics and barriers

2020 ◽  
Author(s):  
Marc Gelkopf ◽  
Yael Mazor ◽  
David Roe
Keyword(s):  
Mental Health ◽  
Clinical Practice ◽  
Outcome Measures ◽  
Outcome Measurement ◽  
Web Security ◽  
Patient Reported Outcome ◽  
Self Report ◽  
Attrition Rate ◽  
Review Of Literature ◽  
Patient Reported

Abstract Purpose To review and integrate the literature on mental-health-related patient-reported outcome measures (PROMs) and routine outcome measures (ROMs), namely in the domains of goals, characteristics, implementation, settings, measurements and barriers. PROM/ROM aims mainly to ascertain treatment impact in routine clinical practice through systematic service users’ health assessment using standardized self-report, caretaker and/or provider assessment. Data sources Psych INFO and PubMed including Medline, Biomed Central, EMBASE Psychiatry and Elsevier Science’s Direct. Study selection Systemized review of literature (2000–2018) on implementation and sustainability of PROMs/ROMs in adult mental health settings (MHS). Data extraction and synthesis Systemized review of literature (2000–2018) on numerous aspects of PROM/ROM implementation and sustainability in adult MHS worldwide. Results Based on 103 articles, PROMs/ROMs were implemented mostly in outpatient settings for people with assorted mental health disorders receiving a diversity of services. Frequency of assessments and completion rates varied: one-third of projects had provider assessments; about half had both provider and self-assessments. Barriers to implementation: perceptions that PROM/ROM is intrusive to clinical practice, lack of infrastructure, fear that results may be used for cost containment and service eligibility instead of service quality improvement, difficulties with measures, ethical and confidentiality regulations and web security data management regulations. Conclusion Improving data input systems, sufficient training, regular feedback, measures to increase administrative and logistic support to improve implementation, acceptability, feasibility and sustainability, follow-up assessments and client attrition rate reduction efforts are only some measures needed to enhance PROM/ROM efficiency and efficacy.

scholarly journals Feasibility of Long-Term Patient Self-Reporting of Toxicities From Home via the Internet During Routine Chemotherapy

2013 ◽  
Vol 31 (20) ◽  
pp. 2580-2585 ◽  
Author(s):  
Timothy J. Judson ◽  
Antonia V. Bennett ◽  
Lauren J. Rogak ◽  
Laura Sit ◽  
Allison Barz ◽  
...  
Keyword(s):  
Performance Status ◽  
A Priori ◽  
Routine Care ◽  
Self Report ◽  
Cancer Center ◽  
Technical Problems ◽  
Patient Reported ◽  
Good Patient Compliance ◽  
E Mail

Purpose Patient-reported outcomes are increasingly used in routine outpatient cancer care to guide clinical decisions and enhance communication. Prior evidence suggests good patient compliance with reporting at scheduled clinic visits, but there is limited evidence about compliance with long-term longitudinal reporting between visits. Patients and Methods Patients receiving chemotherapy for lung, gynecologic, genitourinary, or breast cancer at a tertiary cancer center, with access to a home computer and prior e-mail experience, were asked to self-report seven symptomatic toxicities via the Web between visits. E-mail reminders were sent to participants weekly; patient-reported high-grade toxicities triggered e-mail alerts to nurses; printed reports were provided to oncologists at visits. A priori threshold criteria were set to determine if this data collection approach merited further development based on monthly (≥ 75% participants reporting at least once per month on average) and weekly compliance rates (60% at least once per week). Results Between September 2006 and November 2010, 286 patients were enrolled (64% were women; 88% were white; median age, 58 years). Mean follow-up was 34 weeks (range, 2 to 214). On average, monthly compliance was 83%, and weekly compliance was 62%, without attrition until the month before death. Greater compliance was associated with older age and higher education but not with performance status. Compliance was greatest during the initial 12 weeks. Symptomatic illness and technical problems were rarely barriers to compliance. Conclusion Monthly compliance with home Web reporting was high, but weekly compliance was lower, warranting strategies to enhance compliance in routine care settings.

Selecting a PRO-CTCAE based subset for patient reported symptom monitoring during lung cancer treatment (Preprint)

2020 ◽  
Author(s):  
Evalien Veldhuijzen ◽  
Iris Walraven ◽  
Jose Belderbos
Keyword(s):  
Lung Cancer ◽  
Clinical Practice ◽  
Cancer Patients ◽  
Treatment Modalities ◽  
European Organization ◽  
Specific Patient ◽  
Symptom Monitoring ◽  
Lung Cancer Patients ◽  
Wide Range ◽  
Patient Reported

BACKGROUND The Patient Reported Outcomes Version of the Common Terminology Criteria of Adverse Events (PRO-CTCAE) item library covers a wide range of symptoms relevant for oncology care. To enable implementation of PRO-CTCAE-based symptom monitoring in clinical practice, there is a need to select a subset of items relevant for specific patient populations. OBJECTIVE The aim of this study was to develop a PRO-CTCAE subset relevant for patients with lung cancer. METHODS The PRO-CTCAE-based subset for lung cancer patients was generated using a mixed methods approach based on the European Organization for Research and Treatment of Cancer (EORTC) guidelines for developing questionnaires, consisting of a literature review and semi-structured interviews with both lung cancer patients and health care practitioners (HCPs). Both patients and HCPs were queried on the relevance and impact of all PRO-CTCAE items. Results were summarized and, after a final round of expert review, a selection of clinically relevant items for lung cancer patients was made. RESULTS A heterogeneous group of lung cancer patients (n=25) from different treatment modalities and HCPs (n=22) participated in the study. A final list of eight relevant PRO-CTCAE items was created: decreased appetite, cough, shortness of breath, fatigue, constipation, nausea, sadness, and pain (general). CONCLUSIONS Based on literature and both professional and patient input, a subset of PRO-CTCAE items has been identified for use in lung cancer patients in clinical practice. Future work is needed to confirm the validity and effectiveness of this PRO-CTCAE lung cancer subset internationally, and in the real-world clinical practice setting.

scholarly journals Enhancing Patient-Provider Communication With the Electronic Self-Report Assessment for Cancer: A Randomized Trial

2011 ◽  
Vol 29 (8) ◽  
pp. 1029-1035 ◽  
Author(s):  
Donna L. Berry ◽  
Brent A. Blumenstein ◽  
Barbara Halpenny ◽  
Seth Wolpin ◽  
Jesse R. Fann ◽  
...  
Keyword(s):  
Controlled Trial ◽  
Clinic Visit ◽  
Self Report ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Control Group ◽  
Cancer Symptoms ◽  
Patient Reported ◽  
Life Issues ◽  
Clinic Visits

Purpose Although patient-reported cancer symptoms and quality-of-life issues (SQLIs) have been promoted as essential to a comprehensive assessment, efficient and efficacious methods have not been widely tested in clinical settings. The purpose of this trial was to determine the effect of the Electronic Self-Report Assessment–Cancer (ESRA-C) on the likelihood of SQLIs discussed between clinicians and patients with cancer in ambulatory clinic visits. Secondary objectives included comparison of visit duration between groups and usefulness of the ESRA-C as reported by clinicians. Patients and Methods This randomized controlled trial was conducted in 660 patients with various cancer diagnoses and stages at two institutions of a comprehensive cancer center. Patient-reported SQLIs were automatically displayed on a graphical summary and provided to the clinical team before an on-treatment visit (n = 327); in the control group, no summary was provided (n = 333). SQLIs were scored for level of severity or distress. One on-treatment clinic visit was audio recorded for each participant and then scored for discussion of each SQLI. We hypothesized that problematic SQLIs would be discussed more often when the intervention was delivered to the clinicians. Results The likelihood of SQLIs being discussed differed by randomized group and depended on whether an SQLI was first reported as problematic (P = .032). Clinic visits were similar with regard to duration between groups, and clinicians reported the summary as useful. Conclusion The ESRA-C is the first electronic self-report application to increase discussion of SQLIs in a US randomized clinical trial.

scholarly journals The Inflammatory Bowel Disease Symptom Inventory: A Patient-report Scale for Research and Clinical Application

2019 ◽  
Vol 25 (8) ◽  
pp. 1277-1290 ◽  
Author(s):  
Kathryn A Sexton ◽  
John R Walker ◽  
Laura E Targownik ◽  
Lesley A Graff ◽  
Clove Haviva ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Factor Analysis ◽  
Bowel Disease ◽  
Convergent Validity ◽  
Short Form ◽  
Self Report ◽  
Measurement Properties ◽  
Systemic Complications ◽  
Patient Reported ◽  
Inflammatory Bowel

Abstract Objectives Existing measures of inflammatory bowel disease (IBD) symptoms are not well suited to self-report, inadequate in measurement properties, insufficiently specific, or burdensome for brief or repeated administration. We aimed to develop a patient-reported outcome measure to assess a broader range of IBD symptoms. Methods The IBD Symptoms Inventory (IBDSI) was developed by adapting symptom items from existing clinician-rated or diary-format inventories; after factor analysis, 38 items were retained on 5 subscales: bowel symptoms, abdominal discomfort, fatigue, bowel complications, and systemic complications. Participants completed the IBDSI and other self-report measures during a clinic visit. A nurse administered the Harvey Bradshaw Index (HBI) for Crohn’s disease (CD) or the Powell-Tuck Index (PTI) for ulcerative colitis (UC), and a gastroenterologist completed a global assessment of disease severity (PGA). Results The 267 participants with CD (n = 142) or UC (n = 125), ages 18 to 81 (M = 43.4, SD = 14.6) were 58.1% female, with a mean disease duration of 13.9 (SD = 10.5) years. Confirmatory factor analysis supported the 5 subscales. The total scale and subscales showed good reliability and significant correlations with self-report symptom and IBD quality of life measures, the HBI, PTI, and PGA. Conclusions The IBDSI showed strong measurement properties: a supported factor structure, very good internal consistency, convergent validity, and excellent sensitivity and specificity to clinician-rated active disease. Self-report HBI and PTI items, when extracted from this measure, produced scores comparable to clinician-administered versions. The 38-item IBDSI, or 26-item short form, can be used as a brief survey of common IBD symptoms in clinic or research settings.

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