The ultimate goal of this program of research is to maximize positive health outcomes for those with cancer by creating opportunities in a supportive environment for individuals to fully express themselves regarding cancer symptoms and quality of life concerns. Patients with cancer, across a wide range of diagnoses and stages, have a high incidence of symptoms that may greatly impact quality of life. However, clinicians are faced too often with shrinking resources, removing opportunities for comprehensive, interpersonal interactions with patients. Patient-reported outcomes and status, particularly symptoms and quality of life (QOL) concerns, reported in a reliable and systematic way, are essential components of the information on which a complete clinical assessment, diagnosis and treatment plan is based. In our current clinical trial, having intervened by giving screening results to providers, we demonstrated the feasibility and acceptability of patient symptom and QOL outcome screening at a large comprehensive cancer center. We are poised to analyze current data that will help us answer the question of the impact on provider communication, yet certain key questions remain relevant to the ability of the patient and family caregivers to describe and present, without hesitation, the symptom and quality of life issues that are of concern. We have evidence that certain symptoms (e.g., cognitive dysfunction) are underreported in face-to-face clinic visits. These findings are consistent with other studies with patient-reported outcomes in ovarian cancer symptoms, cancer-related fatigue and changes in sexual activities. Being able to communicate such concerns to a clinical provider, requires that the patient and/or caregiver understand the concern is important, have a convenient time, place and method to communicate and that the clinical providers will acknowledge and address the concern. The purpose of this study is to further evaluate the clinical, and newly evaluate the remote, use of our enhanced web-based, electronic self-report assessment program for cancer, ESRA-C. Cancer patients will use the system to self-assess their symptoms and QOL before, during and after treatment. In addition to the ESRA-C summary given to clinicians, highlighting areas of concern, our system will provide a customized summary in a format that is useable by patients and coach each patient with three messages: a) why and how often this symptom or QOL issue (SQI) typically occurs in patients like you, b) it can be dealt with, and c) how to talk to your clinical providers about the SQI. These messages will assist patients in face-to-face clinic meetings with the providers, facilitating patient expression and communication regarding issues for which the patient is the expert, cancer related symptoms and QOL concerns. This two-pronged approach to enhancing communication, delivered to both providers and patients, is hypothesized to be a powerful adjunct to excellent clinical monitoring and care. Patients with cancer, across a wide range of diagnoses and stages, have a high incidence of symptoms that may greatly impact quality of life. Patient-reported outcomes and status, particularly symptoms and quality of life concerns, reported in an efficient, reliable and systematic way, are essential components of the information on which a complete clinical assessment, diagnosis and treatment plan is based.

Agency
National Institute of Health (NIH)
Institute
National Institute of Nursing Research (NINR)
Type
Research Project (R01)
Project #
5R01NR008726-06
Application #
7683793
Study Section
Nursing Science: Adults and Older Adults Study Section (NSAA)
Program Officer
Wasserman, Joan
Project Start
2003-12-01
Project End
2011-05-31
Budget Start
2009-06-01
Budget End
2011-05-31
Support Year
6
Fiscal Year
2009
Total Cost
$597,243
Indirect Cost
Name
Dana-Farber Cancer Institute
Department
Type
DUNS #
076580745
City
Boston
State
MA
Country
United States
Zip Code
02215
Fann, Jesse R; Hong, Fangxin; Halpenny, Barbara et al. (2017) Psychosocial outcomes of an electronic self-report assessment and self-care intervention for patients with cancer: a randomized controlled trial. Psychooncology 26:1866-1871
Hong, Fangxin; Blonquist, Traci M; Halpenny, Barbara et al. (2016) Patient-reported symptom distress, and most bothersome issues, before and during cancer treatment. Patient Relat Outcome Meas 7:127-35
Siefert, Mary Lou; Bonquist, Traci M; Berry, Donna L et al. (2015) Symptom-related emergency department visits and hospital admissions during ambulatory cancer treatment. J Community Support Oncol 13:188-94
LeBaron, Virginia T; Blonquist, Traci M; Hong, Fangxin et al. (2015) Screening for Pain in the Ambulatory Cancer Setting: Is 0-10 Enough? J Oncol Pract 11:435-41
Berry, Donna L; Blonquist, Traci M; Patel, Rupa A et al. (2015) Exposure to a patient-centered, Web-based intervention for managing cancer symptom and quality of life issues: impact on symptom distress. J Med Internet Res 17:e136
Wolpin, S E; Halpenny, B; Whitman, G et al. (2015) Development and usability testing of a web-based cancer symptom and quality-of-life support intervention. Health Informatics J 21:10-23
Sheldon, Lisa Kennedy; Blonquist, Traci M; Hilaire, Dany M et al. (2015) Patient cues and symptoms of psychosocial distress: what predicts assessment and treatment of distress by oncology clinicians? Psychooncology 24:1020-7
Berry, Donna L; Hong, Fangxin; Halpenny, Barbara et al. (2014) Electronic self-report assessment for cancer and self-care support: results of a multicenter randomized trial. J Clin Oncol 32:199-205
Siefert, Mary Lou; Hong, Fangxin; Valcarce, Bianca et al. (2014) Patient and clinician communication of self-reported insomnia during ambulatory cancer care clinic visits. Cancer Nurs 37:E51-9
Berry, Donna L; Hong, Fangxin; Halpenny, Barbara et al. (2014) The electronic self report assessment and intervention for cancer: promoting patient verbal reporting of symptom and quality of life issues in a randomized controlled trial. BMC Cancer 14:513

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