scholarly journals Use of clinical care registries to facilitate research study recruitment.

2013 ◽  
Vol 31 (31_suppl) ◽  
pp. 129-129
Author(s):  
Karen Messer ◽  
Tracy M. Layton ◽  
Tony Chen ◽  
Viswanath Nandigam ◽  
Katherine Abihider ◽  
...  
Keyword(s):  
Breast Imaging ◽  
Clinical Care ◽  
Menopausal Status ◽  
Cancer Center ◽  
Future Research ◽  
Care Clinic ◽  
Research Opportunities ◽  
Patient Reported ◽  
Breast Care ◽  
Research Studies

129 Background: We developed IRB-approved secure research registries for our Breast Imaging and Breast Care Clinics at Moores UC San Diego Cancer Center, as part of the UC statewide Athena Breast Health Network. Our clinical care registries securely store patient-reported intake data, which are summarized and uploaded into the medical record for patient care. Following consent, data are securely maintained in a separate research registry. In addition to facilitating quality assurance data collection, these registries aim to 1) maintain a data-rich research registry, 2) offer patients research opportunities, and 3) facilitate participant screening and recruitment into research studies. Methods: Breast Imaging or Breast Care clinic patients complete an online clinical intake form prior to their appointment, either at home or using an iPad in clinic, and are given the opportunity to be involved in research. Patients are asked for site-specific consent to keep personally identifiable intake data in a research registry, for consent to be approached about providing a biospecimen sample, and for consent to be contacted for future research opportunities. Data from consented participants are pulled into secure databases available to study personnel. Results: Participants to date include 4,480 patients, of whom 3,246 consented to use of data for research (72%), and 2,627 have agreed to be contacted for future research opportunities (59%). In a pilot biospecimen collection protocol, 46% of patients agreed to be approached and we have collected over 360 blood or saliva and 51 tissue samples. Additionally, with the use of future contact consent, we have facilitated recruitment of more than 370 participants to multiple lifestyle and survey-based clinical studies. Conclusions: Patients are willing to participate in research, especially in a research registry that requires little additional time on their part. The use of research registries allows collection of a variety of data elements useful for prescreening participants for research studies, including body mass index, age, menopausal status and breast cancer diagnosis. Data- and participant-rich research registries facilitate efficient screening and recruitment for other research studies.

Impact of a clinical care online intake form in a breast care clinic.

2013 ◽  
Vol 31 (31_suppl) ◽  
pp. 137-137
Author(s):  
Tracy M. Layton ◽  
Karen Messer ◽  
John P. Pierce ◽  
Lisa Madlensky ◽  
Lisa Cadmus ◽  
...  
Keyword(s):  
Tissue Sample ◽  
Clinical Care ◽  
Pilot Project ◽  
Future Research ◽  
Tissue Samples ◽  
Care Clinic ◽  
Research Opportunities ◽  
Patient Reported ◽  
Breast Care ◽  
Reported Data

137 Background: An online self-reported clinical care intake form was provided to new surgery patients of the Moores UCSD Breast Care Clinic, as part of a pilot project in collaboration with the University of California Athena Breast Health Network. Clinical care goals were 1) to reduce clinic time by pre-visit collection of patient histories, co-morbidities, and medications and 2) provide patient reported data to clinicians and the electronic medical record (EMR). Clinical research goals were to 1) identify individuals diagnosed with breast cancer, 2) collect baseline measures related to co-morbidities, psychosocial parameters, and lifestyle factors and 3) increase research opportunities and enrollment. Methods: We developed an online intake form for patients to complete at home prior to their appointment. Patients were informed to complete the intake form before their appointment and were sent instructions via email. Patients without an email address had the opportunity to complete their intake form on an iPad in clinic. A summary of intake form answers was uploaded into the EMR for all patients. Patients could consent to future contact, to have their intake data kept in a research registry and/or to provide a blood or tissue sample. Results: From March 2010 to May 2013, 1,224 sequential new breast surgery clinic patients were contacted to complete the online intake form as part of their clinical care. 890 patients completed the intake form prior to their visit (73%). 802 of the 890 patients consented to contact for future research opportunities (90%) and 624 of the 802 consented to share data and EMR access for research (78%). We have coordinated enrollment with our ongoing UCSD biorepository study and have collected 210 blood and 51 tissue samples. Additionally, using future contact consent, we recruited more than 100 participants to multiple lifestyle and survey-based clinical studies. Conclusions: The use of an online intake form is well accepted by patients and provides patient reported data to all clinicians involved in patient care. In conjunction with consented EMR access, these data can be evaluated routinely for quality and efficiency purposes. Initial consent for future contact greatly facilitates participant recruitment to research studies.

scholarly journals Integrative Medicine Program- MD Anderson Cancer Center

2012 ◽  
Vol 7 ◽  
pp. 19
Author(s):  
Richard T Lee
Keyword(s):  
Clinical Outcomes ◽  
Integrative Medicine ◽  
Clinical Care ◽  
Cancer Center ◽  
Future Research ◽  
Clinical Services ◽  
Care Plans ◽  
Md Anderson ◽  
Integrative Medicine Program ◽  
Group Programs

The Integrative Medicine Program at MD Anderson Cancer Center was first established in 1998.  Our mission is to empower patients with cancer and their families to become active partners in their own physical, psycho-spiritual, and social health through personalized education and evidenced-based clinical care to optimize health, quality of life, and clinical outcomes across the cancer continuum.  The program consists of three main components: clinical care, research, and education.  The Integrative Medicine Center provides clinical services to patients through individual and group programs.  The clinical philosophy of the center is to work collaboratively with the oncology teams to build comprehensive and integrative care plans that are personalized, evidence-based, and safe with the goal of improving clinical outcomes.  The individual services comprise of integrative oncology consultation, acupuncture, meditation, music therapy, nutrition, and oncology massage.  The center also provides a variety of group programs including meditation, yoga, tai chi, cooking classes and others.  Over the past 13 years, over 70,000 patients and families have participated in services and programs offered by the center.  The research portfolio focuses on three main areas: mind-body interventions, acupuncture, and meditation.  This lecture will focus on providing an overview of the Integrative Medicine Program at MD Anderson with a focus on the clinical services provided.  Participants will learn about the integrative clinical model and how this is applied to the care of cancer patients at MD Anderson Cancer Center.  Current and future research topics will be discussed as well as patient cases.

scholarly journals Experiences of Inpatient Bone Marrow Transplantation Nurses and Providers Using Electronic Symptom Reporting

2018 ◽  
Vol 14 (8) ◽  
pp. e496-e504 ◽  
Author(s):  
Ashley Leak Bryant ◽  
Erin M. Coffman ◽  
Elizabeth Bullard ◽  
Rachel Hirschey ◽  
Joshua Bradley ◽  
...  
Keyword(s):  
Bone Marrow ◽  
Bone Marrow Transplantation ◽  
Marrow Transplantation ◽  
Clinical Care ◽  
Symptom Reporting ◽  
Cancer Center ◽  
Cell Transplant ◽  
Hematopoietic Stem ◽  
Patient Reported ◽  
Barriers To Implementation

Purpose: To investigate the use of electronic patient-reported outcomes (PROs) to assess symptoms and how they can provide opportunities to clinicians to address symptoms in a timely manner to improve clinical care. As part of a larger study to evaluate whether providing standardized symptom reports to the medical team would decrease the time to treatment of reported symptoms in hematopoietic stem-cell transplant recipients, we assessed nurses’ and providers’ perceptions of electronic symptom reporting. Methods: Semistructured interviews of RNs, MDs, NPs and PAs were conducted at an academic cancer center in the southeastern United States. Nurses’ and providers’ perceptions of electronic symptom reporting were explored. Interviews were audio-recorded, transcribed, and coded by two investigators to identify major themes. Results: Fourteen RNs and seven providers (MDs, PAs, and NPs) participated in the interviews. Three main themes emerged from the interviews: electronic symptom reporting may improve assessment and care, integrating symptom reporting into nurse workflow presents difficulties, and there are barriers for completion of surveys. Conclusion: The majority of nurses and providers believed that the inclusion of electronic symptom reporting in bone marrow transplantation inpatient units has the potential to improve care but that barriers to implementation remain.

scholarly journals An Editorial on Tailoring Patient-Reported Outcomes to the Individual Patient: Precision PROs

2020 ◽  
Author(s):  
Salene Jones ◽  
Scott D. Ramsey ◽  
Joseph M. Unger
Keyword(s):  
Patient Reported Outcomes ◽  
Clinical Care ◽  
Item Bank ◽  
Future Research ◽  
Minimally Important Difference ◽  
Psychometric Methods ◽  
Patient Reported ◽  
The Individual

Patient-reported outcomes (PROs) have the potential to improve clinical care. One barrier to implementing PROs and maximizing their effectiveness is difficulty individualizing PROs. To address this barrier, we propose a precision PRO methodology. By this approach, patients would first define a minimally important difference for themselves. Patients would then choose which items within a PRO item bank are most important to them; these items would be used to monitor patients’ progress. Patients could be compared to each other – even if they chose different questions – using modern psychometric methods. We propose future research to guide how to determine the simplest and most effective precision PRO methodology.

A digital therapeutic for proactive monitoring of patients on immune checkpoint inhibitor therapy for early detection of immune-related adverse events.

2020 ◽  
Vol 38 (5_suppl) ◽  
pp. 101-101
Author(s):  
Shyamali Mallick Singhal ◽  
Shane Dormady ◽  
Jiali Li ◽  
Shiva Singhal ◽  
Lynda Chin
Keyword(s):  
Early Detection ◽  
Adverse Events ◽  
Clinical Care ◽  
Patient Reported Outcome ◽  
Feasibility Trial ◽  
Cancer Center ◽  
Evidence Based ◽  
Close Monitoring ◽  
Patient Reported ◽  
Proactive Monitoring

101 Background: Immune-related adverse events (irAEs) occur frequently in patients receiving immuno-oncology therapy. irAEs are heterogeneous and unpredictable. Experience at academic cancer centers has shown that (1) education of patients and families must be continuous; (2) experience of the care team can improve outcomes; and (3) close monitoring of patients in between visits translate into early detection and timely intervention. Most oncologists in lower volume community practices have not gained the experience nor have the resource for continuous education frequent proactive monitoring. Methods: In addition to self-monitoring by patients on chemotherapy to improve outcome (Basch ref), we hypothesized that adoption of evidence-based management is critical as well. Thus, we have developed ApricityRx, a digital therapeutic (DTx) for end-to-end irAE management, which not only engages patients in frequent self-nonitoring but also activates the oncology team for timely intervention. In brief, ApricityRx (i) enables intelligent monitoring by educating and guiding patients to track specific expert-prioritized symptoms in between clinic visits; (ii) facilitates early recognition by prompting triage at the right time and (iii) recommends evidence-based management based on consensus guidelines. Results: In a community cancer center, 16 patients have been enrolled (44% consent rate) in an IRB approved feasibility trial to evaluate the usability of ApricityRx as a tool for frequent monitoring and timely triage. Over 435 unique longitudinal records containing over 34K data points, including patient-reported outcome (PRO) and clinical care data (EMR), were generated. Interim analyses have shown that primary and secondary endpoints were met. Detailed results will be presented. Conclusions: ApricityRx has shown usability in a low-volume community-based oncology practice to facilitate proactive monitoring and tinely triage by the oncology team. Further, ApricityRx has enabled not only generation of high-resolution patient-reported outcome (PRO) data, but also aggregation of PRO and real-world EHRs data for downstream analyses.

scholarly journals Quality of life measures in older adults after traumatic brain injury: a systematic review

2019 ◽  
Vol 28 (12) ◽  
pp. 3137-3151 ◽  
Author(s):  
Cindy Hunt ◽  
Shatabdy Zahid ◽  
Naomi Ennis ◽  
Alicja Michalak ◽  
Cheryl Masanic ◽  
...  
Keyword(s):  
Systematic Review ◽  
Older Adults ◽  
Injury Severity ◽  
Clinical Care ◽  
Future Research ◽  
Rigorous Research ◽  
Patient Reported ◽  
Study Population ◽  
Hospital Stays ◽  
The Individual

Abstract Background On average older adults experiencing TBI are hospitalized four times as often, have longer hospital stays, and experience slower recovery trajectories and worse functional outcomes compared to younger populations with the same injury severity. A standard measure of Qol for older adults with TBI would facilitate accurate and reliable data across the individual patient care continuum and across clinical care settings, as well as support more rigorous research studies of metadata. Purpose The aim of this systematic review was to investigate patient reported Qol measures in studies with older adults post TBI. Method A systematic review was carried out focusing on the various tools to measure Qol in older adults, ≥ 65 years of age with a diagnosis of TBI. Data bases searched included Medline, Embase, PubMed, CINAHL, and PsychInfo from date of inception to September 25, 2017. Results A total of 20 articles met the inclusion criteria. Nine different tools were identified. Conclusions Findings based on the comparison of reliability and construct validity of the Qol measures reported in this review suggest that no single instrument is superior to all others for our study population. Future research in this field should include the enrollment of larger study samples of older adults. Without these future efforts, the ability to detect an optimal Qol measure will be hindered.

Patient versus clinician symptom reporting using the National Cancer Institute Common Terminology Criteria for Adverse Events

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 8515-8515 ◽  
Author(s):  
E. M. Basch ◽  
T. McDonough ◽  
A. Iasonos ◽  
E. Siegel ◽  
A. Culkin ◽  
...  
Keyword(s):  
Adverse Events ◽  
Patient Reported Outcomes ◽  
Marginal Distribution ◽  
Cancer Center ◽  
Future Research ◽  
Paper Questionnaire ◽  
Significant Difference ◽  
Patient Reported ◽  
The Common ◽  
The Impact

8515 Background: During NCI-sponsored clinical trials, clinicians elicit and report patient toxicity symptoms using the Common Terminology Criteria for Adverse Events (CTCAE). Alternatively, patients may be able to report this information directly, but it remains unclear how these patient reported outcomes (PROs) compare to clinician reports. Methods: Language from the CTCAE version 3 was adapted for patient self-reporting and pilot tested to assure comprehension. Then, a paper questionnaire containing 12 common CTCAE symptoms was administered to consecutive outpatients and their clinicians (physicians and nurses) in clinics specializing in lung or genitourinary malignancies at a specialty cancer center. Results: Between March and May 2005, 435 patients and their clinicians were approached in order to obtain 400 completed paired surveys. For most symptoms agreement was high and this was especially true for more observable symptoms (vomiting, diarrhea) compared to more subjective areas (fatigue, dyspnea) (Table). Most discrepancies were within one point. Only rarely would differences have altered treatment decisions (grade <2 vs. ≥3). Patients more commonly assigned greater severity than clinicians. There was no significant difference when patients reported before versus after caregivers. Kappa values did not accurately measure agreement due to asymmetry in the marginal distribution of scores. Conclusion: Patients and clinicians generally agree on CTCAE symptom severity. Future research should examine the impact of symptom PROs on clinical outcomes and the use of real-time reporting for early detection of SAEs. [Table: see text] No significant financial relationships to disclose.

Prevalence of symptom clusters among sarcoma patients in active treatment.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e22561-e22561
Author(s):  
Vanessa C. Copeland ◽  
Jennifer Phun ◽  
Eve M. Segal ◽  
Kathryn J. Hammer ◽  
Elizabeth T. Loggers
Keyword(s):  
Active Treatment ◽  
Patient Reported Outcomes ◽  
Chart Review ◽  
Additional Data ◽  
Clinical Care ◽  
Retrospective Chart Review ◽  
Symptom Clusters ◽  
Future Research ◽  
Specific Data ◽  
Patient Reported

e22561 Background: Cancer patients (pt) frequently experience symptoms from cancer or its treatment. Two or three co-occurring, uncontrolled symptoms (symptom clusters, SC), can worsen cancer pt morbidity and mortality. Although SC have been characterized in other cancer pts, little research has been conducted in sarcoma pts. Methods: SC were studied via retrospective chart review of adult sarcoma pts receiving treatment between 09/2018-01/2019 in a dedicated sarcoma clinic. Pts completed a 33-item, modified Patient Reported Outcomes-Common Terminology Criteria for Adverse Events (mPRO-CTCAE)-based review of systems (hereafter “form”) for ongoing clinical care with presence of individual symptoms defined as ≥“occasionally.” Demographic, disease and treatment specific data was collected; descriptive data (%’s) are presented. Results: Pts (n = 153 completing 321 forms) were median 57 years (range 20-81), 48% male, 68% white, with lower extremity (29%) or abdomen (46%) sarcoma with 67% receiving IV chemo (33% oral chemo), with the majority at full dose (77%). Most had leiomyosarcoma 18%, liposarcoma 14%, GIST 12%, or NOS 24% with 59% metastatic disease. Five SC triads occurring in > 25% of pts who fully completed one form were identified (see Table). Eighty-one pts completed 2 or more forms (mean 26.7 days from first to second form [std dev 17.7, range 2-77]) with 50-67% of evaluable pts having ongoing SC triads. Conclusions: Symptom clusters are common among sarcoma patients on active treatment. Future research should address optimal management of these clusters. Additional data, including severity/interference of symptoms, longitudinal changes and predictors of SC, will be presented.[Table: see text]

Stakeholder feedback at four ePRO-naïve healthcare institutions about the need, effectiveness, and barriers to usage of a fully EHR-integrated ePRO tool.

2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 165-165
Author(s):  
Deborah Schrag ◽  
Raymond U. Osarogiagbon ◽  
Sandra L. Wong ◽  
Hannah Hazard ◽  
Jessica J Bian ◽  
...  
Keyword(s):  
Language Proficiency ◽  
Symptom Management ◽  
Computer Literacy ◽  
English Language ◽  
Medical Center ◽  
Cancer Center ◽  
Patient Acceptance ◽  
Future Research ◽  
Multiple Choice Questions ◽  
Patient Reported

165 Background: Collecting patient-reported outcomes (PROs) is a proven method to enhance doctor-patient communication and care. With the influx of technology and usage of telehealth services, electronic PROs (ePROS) have become the mainstay for ascertaining how a patient is doing at home. Collection of ePROs is particularly valuable for providers caring for rural and vulnerable populations with limited access to high quality care. A fully EHR-integrated ePRO collection system could help bridge the gap. Methods: To inform the design, function, and deployment of a new EHR-integrated ePRO symptom management system, focus groups with stakeholders were conducted at four institutions caring for largely rural-based populations (Baptist Cancer Center, West Virginia University Cancer Institute, Dartmouth-Hitchcock Medical Center, Maine Medical Center). Sessions were conducted 2 to 3 months prior to the launch of a new ePRO platform and included oncologists, surgeons, practice nurses, tech analysts, operations staff, and institutional leadership. Each group included a 30-minute overview of the new tool followed by a 30-minute discussion with qualitative open-ended questions and clicker-enabled multiple-choice questions. Developed questions utilized the CFIR and RE-AIM implementation frameworks. Results: In total, 134 stakeholders participated from the four institutions. RNs made up nearly half of respondents (47%). 97% of participants felt a new ePRO system would complement existing healthcare initiatives and 64% felt it would be extremely effective/very effective in improving symptom management. Each group was asked to rate the barriers to patient usage of an ePRO system in the home-care setting. Computer literacy (51%) and access to an internet-enabled device (48%) ranked as the highest barriers. Other barriers perceived to be of less significance included privacy, distrust, and limited English-language proficiency. Consequently, two-thirds of respondents felt patients would only be somewhat likely/not so likely to use an ePRO system; one-third felt patients would be likely/extremely likely to utilize the system. Conclusions: From the perspective of stakeholders at four engaged institutions, an integrated ePRO tool is considered a widely acceptable symptom management solution, but uncertainty remains around patient acceptance and uptake. Future research will include post-implementation discussions with stakeholders and evaluation of patient utilization and clinical outcomes.

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