This application addresses broad Challenge Area (06) Enabling Technologies and specific Challenge Topic, 06-CA-101: Enhancing Electronic Patient-Reported Outcomes Assessment in Clinical Research or Healthcare Delivery. Title: "Web-based Patient-Reported Outcomes (PRO) System for Breast Cancer Survivors" The issues surrounding the ongoing care, support, and surveillance of breast cancer survivors are described in the Institute of Medicine 2006 publication "From Cancer Patient to Cancer Survivor: Lost in Transition." Proactive monitoring of survivor symptoms (such as those symptoms indicating possible recurrence or addressable treatment-related side effects) and quality of life (QOL) are not commonly addressed during follow-up visits. At the same time, most patients are seen far more frequently than ASCO recommends for survivor follow-up visits, resulting in capacity issues in the clinical setting. While such issues are widely recognized, lack of time and resources to build well-structured survivorship programs and insufficient tools to enable communication, education, and surveillance prevent cancer centers from addressing these issues in a proactive, systemic way. The pillars of success for this proposal will be based on leveraging previous work completed by the same collaborative team proposed in this project: " In 2007, the University of California San Francisco (UCSF) and Dartmouth-Hitchcock Medical Center (D-H) collaborated with Dynamic Clinical Systems (DCS) under SBIR funding (NCI Topic 212) to develop a patient-reported outcomes (PRO) system, Integrated Survey System(R) (ISS), for new breast patients; " In 2008, UCSF and Dartmouth launched survivorship programs to provide patients with the education, tools, and support needed to transition from cancer treatment settings; " In 2009, UCSF launched a randomized controlled trial (RCT) to compare traditional in-clinic follow-up care with a new at-home follow-up track whereby breast cancer survivors complete questionnaires to be reviewed by a clinician remotely using ISS. The specific aims of this project are to build on this previous work and momentum to: 1. Design patient-reported outcomes (PRO) system functionality and processes for breast cancer survivors, and develop high-priority system features, including: (A) at-home survivorship process and system to collect PRO data via the Web; (B) care coordination among physicians; (C) automated referrals to specialists (e.g., dietician, smoking cessation, exercise program, peer support, etc.); (D) symptom surveillance and management; (E) tailored survivorship education about wellness and recurrence prevention based on patient responses to questionnaires; 2. Assess feasibility of implementation using cross-sectional and longitudinal metrics including: (A) survivor completion rates and acceptability (categorized by variables such as education, age, health status, survivorship stage, at-home vs. in-clinic administration); (B) clinician satisfaction; (C) pre- vs. post- implementation referral rates; (D) comparison of patient-reported data to previous clinical documentation of ancillary factors such as QOL, substance abuse, tobacco use, mental health status; 3. Produce white paper for other cancer centers preparing to implement PRO systems and processes to provide surveillance, care, and support for cancer patients, including: project planning, organization requirements, interoperability requirements (for sharing data with hospital systems or personal health records), implementation barriers and opportunities to optimize stakeholder adoption. The team assembled represents the continuation of a highly successful collaboration between D-H and UCSF Breast Centers led by Dynamic Clinical Systems (DCS). This deeply devoted, experienced team has been working together for over three years after significant time invested separately pursuing patient-reported outcomes initiatives. In addition to representing rural and urban patient populations between these two institutions, the consultants on this project will represent the perspectives of community-based cancer patients and providers. While not named as consultants to this project, the team will solicit input from colleagues, including primary care physicians and cancer care providers for underserved patient populations. Given the successful implementation of this system for new breast cancer patients, this team is confident that (1) the enhancements to be designed and developed will improve the quality and efficiency of communication, care, and support for breast cancer survivors; (2) the study findings will encourage and help pave the way for other PRO-enabled survivorship program implementations. This application addresses broad Challenge Area (06) Enabling Technologies and specific Challenge Topic, 06-CA-101: Enhancing Electronic Patient-Reported Outcomes Assessment in Clinical Research or Healthcare Delivery. Title: "Web-based Patient-Reported Outcomes (PRO) System for Breast Cancer Survivors" Project Narrative The goal of this project is to enable cancer centers to provide ongoing care, surveillance, and support for their breast cancer survivors using Web-based tools and processes. After breast cancer patients have completed treatment, they will be periodically emailed a website link to complete questionnaires to communicate their quality of life (physical, functional, mental health status), symptoms, and health habits to their cancer centers. Completion of these questionnaires will immediately provide the survivor with education tailored to her responses and will email summary reports to the cancer center and appropriate specialists, highlighting symptom trends over time and potential areas for follow-up.
Public Health Relevance Statement: This application addresses broad Challenge Area (06) Enabling Technologies and specific Challenge Topic, 06-CA-101: Enhancing Electronic Patient-Reported Outcomes Assessment in Clinical Research or Healthcare Delivery. Title: "Web-based Patient-Reported Outcomes (PRO) System for Breast Cancer Survivors" Project Narrative The goal of this project is to enable cancer centers to provide ongoing care, surveillance, and support for their breast cancer survivors using Web-based tools and processes. After breast cancer patients have completed treatment, they will be periodically emailed a website link to complete questionnaires to communicate their quality of life (physical, functional, mental health status), symptoms, and health habits to their cancer centers. Completion of these questionnaires will immediately provide the survivor with education tailored to her responses and will email summary reports to the cancer center and appropriate specialists, highlighting symptom trends over time and potential areas for follow-up.
NIH Spending Category: Behavioral and Social Science; Breast Cancer; Cancer; Clinical Research; Health Services; Networking and Information Technology R&D; Smoking and Health; Tobacco
Project Terms: abuse of substances; Academic Medical Centers; Active Follow-up; Address; Adoption; Adverse effects; Age; American Society of Clinical Oncology; anticancer therapy; Area; ASCO; base; Breast; California; cancer care; Cancer Center; Cancer of Breast; Cancer Patient; Cancer Survivor; Cancer Survivorship; cancer therapy; Cancer Treatment; Caring; Categories; cease smoking; Cessation of smoking; Client satisfaction; Clinic; Clinical; clinical data repository; clinical data warehouse; Clinical Research; Clinical Study; Collaborations; Communication; Communities; Computer Literacy; Data; Data Banks; Data Bases; Data Reporting; data repository; Databank, Electronic; Databanks; Database, Electronic; Databases; Delivery of Health Care; design; designing; disorder later incidence prevention; Documentation; E-Mail; Education; Education Level; Educational aspects; Educational Background; Electronic Mail; Electronics; Email; Exercise; Exercise, Physical; experience; Feedback; follow-up; Funding; Goals; Habits; Health; health care delivery; Health Sciences, Allied and Health Services Delivery; Health Status; Healthcare Delivery; Home; Home environment; HOSP; Hospitals; improved; Individual; Information Systems; Information Technology Systems; Institute of Medicine; Institute of Medicine (U.S.); Institution; Internet; interoperability; Interview; IT Systems; Level of Health; Link; Long Term Survivorship; Long-Term Survivors; LTS; malignant breast neoplasm; Malignant neoplasm of breast; Malignant Neoplasm Therapy; Malignant Neoplasm Treatment; Malignant Tumor of the Breast; Measures; Medical center; Medical Specialities; medical specialties; Mental Health; Mental Hygiene; Methods; Methods and Techniques; Methods, Other; Metric; Monitor; Names; NAS/IOM; On-Line Systems; Oncologist; online computer; Online Systems; Outcome Assessment (Health Care); Outcomes Assessment; Outcomes Assessments, Patient; Paper; Patient Outcomes Assessments; patient population; Patient Reported Outcomes; Patient Satisfaction; Patients; peer; Personal Health Records; Physicians; prevent; preventing; prevention of disease recurrence; prevention of disorder recurrence; prevention of later incidences of a disorder; prevention of recurrence; Prevention of relapse; Primary Care; Primary Care Physician; Primary Health Care; Primary Healthcare; Process; programs; Programs (PT); Programs [Publication Type]; PROV; Provider; Psychological Health; Publications; QOL; Quality of life; Questionnaires; randomized controlled study; Randomized Controlled Trials; Recommendation; Recurrence; Recurrent; relational database; Research; Research Resources; Resources; response; Risk; Rural; San Francisco; satisfaction; SBIR; SBIRS (R43/44); SCHED; Schedule; Scientific Publication; Self Management; sharing data; side effect; Small Business Innovation Research; Small Business Innovation Research Grant; Smoking; smoking cessation; Specialist; Specialties, Medical; Specialty; Staging; Structure; substance abuse; Substance abuse problem; success; Summary Reports; Survey Instrument; Surveys; Survivors; Survivors, Long-Term; survivorship; Symptoms; System; System, LOINC Axis 4; Systems, Data; Techniques; Technology; therapy adverse effect; Time; Tobacco Consumption; Tobacco use; tool; treatment adverse effect; Treatment Side Effects; trend; Universities; University Medical Centers; Visit; web; web based; web site; Work; world wide web; WWW
