scholarly journals Patient-Reported Outcome Measure for Real-time Symptom Assessment in Women With Endometriosis: Focus Group Study (Preprint)

2021 ◽  
Author(s):  
Esther van Barneveld ◽  
Arianne Lim ◽  
Nehalennia van Hanegem ◽  
Lisa Vork ◽  
Alexandra Herrewegh ◽  
...  
Keyword(s):  
Assessment Tool ◽  
Contextual Information ◽  
Treatment Plan ◽  
Compliance Rate ◽  
Symptom Assessment ◽  
Personalized Treatment ◽  
Focus Group Study ◽  
Digital Tool ◽  
Patient Reported ◽  
Momentary Assessment

BACKGROUND Symptoms related to endometriosis have a significant impact on the quality of life, and symptoms often recur. The experience sampling method (ESM), a digital questioning method characterized by randomly repeated momentary assessments, has several advantages over traditionally used measurements, including the ability to assess the temporal relationship between variables such as physical, mental, and social factors. OBJECTIVE The aim of this study is to develop an ESM tool for patients with endometriosis to accurately measure symptoms and their course over time, allowing for personalized treatment and adequate monitoring of treatment efficacy in individual patients. METHODS On the basis of international guidelines, items from validated questionnaires were selected through a literature review and during focus groups and multidisciplinary expert meetings. Data analysis was conducted using ATLAS.ti (ATLAS.ti Scientific Software Development GmbH). The feasibility and usability of the newly developed momentary assessment tool were tested for 28 consecutive days in 5 patients with endometriosis-related pain symptoms. RESULTS Momentary assessment items contained questions concerning endometriosis symptoms, general somatic symptoms, psychological symptoms, contextual information, and the use of food and medication. A morning questionnaire on sleep and sexuality was included. In a pilot study, the patients considered the tool easy to use but time consuming. The average compliance rate of momentary assessments was 37.8% (106/280), with the highest completion rate during the first week (39/70, 56%). Therefore, it is advisable to use the ESM for a maximum of 7 days. CONCLUSIONS A new digital tool for endometriosis symptom assessment was developed using the ESM, which may help overcome the limitations of current retrospective questionnaires. After validation and testing, future studies will be planned to evaluate the use of this tool in a clinical setting in order to propose a personalized treatment plan for women with endometriosis. CLINICALTRIAL

Integrating patient-reported outcomes data into the electronic health record.

2018 ◽  
Vol 36 (30_suppl) ◽  
pp. 186-186
Author(s):  
Brandon Bosch ◽  
Scott Hartman ◽  
Lauren Caldarello ◽  
Diane Denny, DBA
Keyword(s):  
Electronic Health Record ◽  
Population Analysis ◽  
Treatment Plan ◽  
Symptom Burden ◽  
Symptom Assessment ◽  
Patient Reported Outcome ◽  
Health Record ◽  
National Network ◽  
Patient Reported ◽  
Electronic Health

186 Background: As a national network of hospitals that specialize in the treatment of patients fighting complex or advanced-stage cancer, the network was an early adopter of using patient reported outcome (PRO) data as part of its routine patient assessment and treatment. Since 2012 an externally validated tool has been used to capture patients’ perceived symptom burden for real-time clinical intervention, from the point of first visit throughout the course of treatment, at intervals of 21 days or greater. Research has demonstrated the use of PRO data as a valuable component of a patient’s treatment plan, promoting improved quality and length of life. Methods: The use of this data across the network was expanded such that results once only accessible on paper and via electronically stored images, has now been fully integrated into the electronic health record (EHR). A multidisciplinary project team formulated the specifications for a successful integration of PRO data into the EHR. Results: The project achieved its goal and went beyond data integration to include implementation of a solution to facilitate documentation of intervention against patients’ symptoms. Provider workflow efficiency is greatly enhanced via single system access and visual notification, with critical values flagged, to focus providers’ attention on severe symptoms. Incorporation of a unified EHR flowsheet provides a paperless, one-stop symptom assessment approach and streamlined mechanism for intervention documentation. The documentation module leverages structured data fields and linkage of PRO data with interventions, such as specialist referrals or medication orders, to support enhanced patient care and quality improvement. Conclusions: The ability to easily view an array of patient reported concerns and document interventions against severe or significantly worsening symptoms provides clinicians an enhanced ability to address quality of life related needs. PRO data is now stored electronically in the enterprise warehouse, thus enabling aggregation with data from which to perform population analysis and eventually, pursue opportunities for predictive modeling.

Successes with and barriers to patient-reported outcome deployment at a comprehensive cancer center.

2018 ◽  
Vol 36 (30_suppl) ◽  
pp. 292-292
Author(s):  
Nadine Jackson McCleary ◽  
Deborah Schrag ◽  
Neil E. Martin ◽  
Sadiqa Mahmood ◽  
Elizabeth Beyer ◽  
...  
Keyword(s):  
Adverse Events ◽  
Assessment Tool ◽  
Treatment Plan ◽  
Patient Reported Outcome ◽  
Lessons Learned ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Patient Reported ◽  
Oncology Practice ◽  
Plan Modification

292 Background: Routine collection of patient reported outcomes (PROs) reduces hospitalizations and improves quality of life. In the absence of clear implementation guidelines and research guiding deployment, PROs may not have the desired impact on outcomes in routine oncology practice. We share lessons learned from PRO deployment at Dana-Farber Cancer Institute. Methods: We developed a symptom/toxicity assessment tool based on the PRO-CTCAE to capture 15 symptomatic adverse events with a 1-week recall: fatigue/ decreased appetite/insomnia/ shortness of breath/numbness and tingling/concentration, general pain/anxiety/sadness, rash, nausea/vomiting/fever, constipation, and diarrhea. Responses from eligible English-literate patients scheduled for a gastrointestinal cancer center or adult palliative care visit between January 18 to March 22, 2018 were transmitted directly from clinic tablet to the EMR. To evaluate the deployment, we sought qualitative feedback from clinic staff and three multidisciplinary working groups comprised of patients, nurses, pharmacists, operations leaders, quality/safety experts, and health services researchers to identify technical and workflow gaps in PRO Content, Implementation, and Analytics. Results: We noted a 38% response rate of the N = 4440 PROs assigned to N = 4440 scheduled visits for N = 2055 unique patients (36% were completed, 2% started but not completed); 62% were not started. Workflow enhancement requests include an updated summary view, a clinical documentation tool, a scoring algorithm to highlight severe responses, and a quality metric dashboard to evaluate the deployment. Ongoing analyses are studying the proportion of moderate-severe symptomatic adverse events reported and their association with provider action (i.e., supportive care referral, chemotherapy treatment plan modification, or unplanned ED/hospitalization in the subsequent 30 days). Conclusions: Refinement of the PRO deployment strategy is needed to guide implementation efforts and demonstrate meaningful impact in routine oncology practice.

Psychometric evaluation of a patient-reported symptom assessment tool for adults with haemophilia (the HAEMO-SYM)

Haemophilia ◽  
2009 ◽  
Vol 15 (5) ◽  
pp. 1039-1047 ◽  
Author(s):  
A. RENTZ ◽  
E. FLOOD ◽  
R. BUTLER ◽  
B. CHRISTIE ◽  
P. GIANGRANDE ◽  
...  
Keyword(s):  
Assessment Tool ◽  
Psychometric Evaluation ◽  
Symptom Assessment ◽  
Patient Reported

The Utility of the New Instrument for Comprehensive Symptom Profile Assessment In Patients with Multiple Myeloma

Blood ◽  
2010 ◽  
Vol 116 (21) ◽  
pp. 4757-4757
Author(s):  
Andrei A Novik ◽  
Tatyana I Ionova ◽  
Svetlana A Kalyadina ◽  
Denis A Fedorenko ◽  
Nikita E Mochkin ◽  
...  
Keyword(s):  
Multiple Myeloma ◽  
Symptom Severity ◽  
Rating Scales ◽  
Assessment Tool ◽  
Conflicts Of Interest ◽  
Symptom Assessment ◽  
Time Points ◽  
Symptom Profile ◽  
New Instrument ◽  
Patient Reported

Abstract Abstract 4757 Increased importance should be placed on the comprehensive symptom assessment in patients with multiple myeloma to accurately document the broad range of physical and psychological disease manifestations given from the patient perspective. The new developed symptom assessment tool - Comprehensive Symptom Profile in Multiple Myeloma Patients (CSP-MM) aims to provide an in-depth view of patient's problems. It is currently undergoing content validation through a structured, iterative process that conforms to the FDA industry guidance on the use of patient-reported outcome measures. We aimed to evaluate the utility of the new instrument providing evidence of its content validity. Pilot sample of twenty two patients with different stages of multiple myeloma were included in this qualitative research study. Patients underwent either conventional chemotherapy or autologous stem cell transplantation. Mean age was 58 years old; male/female distribution –11/11. The CSP-MM is a self-reported tool which consists of 51numeric rating scales (where “0” - no symptom, “10” - most expressed symptom). Evidence of adequate tool content was collected from multiple sources: literature review, pilot CSP-MM completion, cognitive interviews with patients and clinicians, expert evaluation, and data quality control. Patients filled out the CSP-MM before and at different time-points of treatment. The utility of the CSP-MM was demonstrated. After the completion of the pilot, patients were asked about their overall assessment of the questionnaire. Open-ended patient interviews provided a full understanding of the patient's perspective and showed that saturation of the items has been reached. The patients acknowledged the comprehensiveness of the tool. All of the items were easy for the patients to read and understand. Total number of completed surveys was 79 with only 1.6% missing items throughout all forms. Completion of the CSP-MM in paper and pencil format took 7–9 min. The data produced by the tool were clear for interpretation by physicians. According to the clinicians’ interviews, changes in symptom severity captured by the tool at different time-points of treatment gave the physicians information about patient experience and were used by them in day-to-day decision making. Thus, the CSP-MM is an appropriate and practical tool to assess the symptom severity in myeloma patients. The utility of the questionnaire was shown. Pending further validation, the CSP-MM can be used to assess symptoms in MM patients and the patient benefit from the treatment. Disclosures: No relevant conflicts of interest to declare.

Development of symptom assessment tool for terminal cancer patients

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 19634-19634
Author(s):  
S. Koh ◽  
K. Lee ◽  
Y. Hong ◽  
J. Kang ◽  
I. Woo ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Assessment Tool ◽  
Objective Assessment ◽  
Symptom Assessment ◽  
Physical Symptoms ◽  
Assessment Method ◽  
Terminal Cancer ◽  
Patient Reported ◽  
Terminal Cancer Patients ◽  
Mental Symptoms

19634 Background: A symptom assessment is important to control the terminal cancer patients’ symptoms successfully and improve their quality of life. Our research team has developed the objective assessment method for the terminal patients’ symptoms and compared the results with the patient self-reported outcomes using Memorial Symptom Assessment Scale (MSAS). Methods: From September in 2004, the 121 inpatients without anti-cancer therapy in terminal stage of cancer were evaluated in Kangnam St. Mary's Hospital. The 17 common symptoms were graded as four categories; none(0), mild(1), moderate(2), and severe(3) with reference to NCI-CTC and WHO toxicity criteria. An attending physician assessed 17 symptoms at the similar hour every day. Among the inpatients, those who had clear consciousness and could communicate normally were investigated every week to evaluate the frequency and severity of common symptoms and their distress degree using MSAS. Results: Only 54 patients (44.6%) could be examined to evaluate the symptoms by MSAS. However, the symptoms estimated by our assessment tool were less serious in the terms of severity and distress degree than that patients felt actually. This tendency was shown more obviously in the mental symptoms; Drowsiness (p=0.0001), Nervousness (p=0.0001), and Anxiety (p=0.005). However, the physical symptoms had no statistical difference between the results from patients and physician. Conclusions: Patient-reported outcomes using MSAS could be obtained from 44.6% of the inpatients with terminal cancer every week. However, the objective assessment tool to evaluate the common symptoms of terminal cancer patients can be applied for all patients including the incommunicable, every day. Furthermore, this assessment tool may be more suitable for examining the physical symptoms of terminal cancer patients. No significant financial relationships to disclose.

scholarly journals Development of EirV3: A Computer-Based Tool for Patient-Reported Outcome Measures in Cancer

2017 ◽  
pp. 1-14 ◽  
Author(s):  
Hilde Krogstad ◽  
Cinzia Brunelli ◽  
Kari Sand ◽  
Eivind Andersen ◽  
Herish Garresori ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Assessment Tool ◽  
Symptom Assessment ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
End Users ◽  
Care Providers ◽  
Patient Reported ◽  
Computer Based ◽  
User Friendly

Purpose Immediate transfer of patient-reported outcome measures (PROMs) for use in medical consultations is facilitated by electronic assessments. We aimed to describe the rationale and development of Eir version 3 (EirV3), a computer-based symptom assessment tool for cancer, with emphasis on content and user-friendliness. Methods EirV3’s specifications and content were developed through multiprofessional, stepwise, and iterative processes (from 2013 to 2016), with literature reviews on traditional and electronic assessment and classification methods, formative iterative usability tests with end-users, and assessment of patient preferences for paper versus electronic assessments. Results EirV3 has the following two modules: Eir-Patient for PROMs registration on tablets and Eir-Doctor for presentation of PROMs in a user-friendly interface on computers. Eir-Patient starts with 19 common cancer symptoms followed by specific, in-depth questions for endorsed symptoms. The pain section includes a body map for pain location and intensity, whereas physical functioning, nutritional intake, and well-being are standard questions for all. Data are wirelessly transferred to Eir-Doctor. Symptoms with intensity scores ≥ 3 (on a 0 to 10 scale) are marked in red, with brighter colors corresponding to higher intensity, and supplemented with graphs displaying symptom development over time. Usability results showed that patients and health care providers found EirV3 to be intuitive, easy to use, and relevant. When comparing PROM assessments on paper versus tablets (n = 114), 19% of patients preferred paper, 41% preferred tablets, and 40% had no preference. Median intraclass correlation coefficient between paper and tablets (0.815) was excellent. Conclusion Iterative test rounds followed by continuous improvements led to a user-friendly, applicable symptom assessment tool, EirV3, developed for and by end-users. EirV3 is undergoing international testing of clinical and cross-cultural adaptability.

scholarly journals Prospective Study of Use of Edmonton Symptom Assessment Scale Versus Routine Symptom Management During Weekly Radiation Treatment Visits

2020 ◽  
Vol 16 (9) ◽  
pp. e1029-e1035
Author(s):  
Uma D. Goyal ◽  
Kristen Riegert ◽  
Rajayogesh Davuluri ◽  
Shawn Ong ◽  
Sun K. Yi ◽  
...  
Keyword(s):  
Symptom Severity ◽  
Symptom Management ◽  
Assessment Tool ◽  
Radiation Treatment ◽  
Symptom Assessment ◽  
Assessment Scale ◽  
Improvement Project ◽  
Patient Reported ◽  
Edmonton Symptom Assessment Scale ◽  
Symptom Assessment Scale

PURPOSE: During radiotherapy (RT), patient symptoms are evaluated and managed weekly during physician on-treatment visits (OTVs). The Edmonton Symptom Assessment Scale (ESAS) is a 9-symptom validated self-assessment tool for reporting common symptoms in patients with cancer. We hypothesized that implementation and physician review of ESAS during weekly OTVs may result in betterment of symptom severity during RT for certain modifiable domains. METHODS: As an institutional quality improvement project, patients were partitioned into 2 groups: (1) 85 patients completing weekly ESAS (preintervention) but blinded to their providers who gave routine symptom management and (2) 170 completing weekly ESAS (postintervention group) reviewed by providers during weekly OTVs with possible intervention. To determine the independent association with symptom severity of the intervention, multivariate logistic regression was performed. At study conclusion, provider assessments of ESAS utility were also collected. RESULTS: Compared with the preintervention group, stable or improved symptom severity was seen in the postintervention group for pain (70.7% v 85.6%; P = .005) and anxiety (79.3% v 92.9%; P = .002). The postintervention group had decreased association (on multivariate analysis) with worsening severity of pain (OR, 0.13; P < .001), nausea (OR, 0.25; P = .023), loss of appetite (OR, 0.30; P = .024), and anxiety (OR, 0.19; P = .005). Most physicians (87.5%) and nurses (75%) found ESAS review useful in symptom management. CONCLUSION: Incorporation of ESAS for OTVs was associated with stable or improved symptom severity where therapeutic intervention is more readily available, such as counseling, pain medication, anti-emetics, appetite stimulants, and anti-anxiolytics. The incorporation of validated patient-reported symptom-scoring tools may improve provider management.

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