303688
Cancer patient perceptions of symptom care collected using a registry-based system suitable for PRO surveillance
The Patient Reported Outcomes Symptoms & Side Effects Study sampled patients 4-12 months from diagnosis with locoregional breast/colon cancer from 17 CCCs. Software automating case identification, sampling and reporting was developed and beta-tested. The questionnaire was adapted from validated NCI instruments and mailed using the Dillman method with online option.
2,517 patients responded (RR=60%). 71% of all patients reported a health provider gave advice on coping with pain related to their cancer, 61% for fatigue, 55% for emotional distress (ED). 62% reported being bothered by pain, 72% by fatigue, 47% by ED. Logistic regressions revealed colon cancer patients and those with less education were less likely to report getting advice on coping with symptoms (p<0.01). All outcomes varied significantly across hospital sites after adjusting for cancer type and education (p<0.01).
1/3 to 1/2 of patients did not recall getting advice for three common symptoms. CCC-level variations in outcomes suggest symptom care may vary geographically. CCC-specific reports may promote efforts to improve care through professional/patient education and applying standards of care. The system for collecting PROs has potential for wider dissemination and use with other PROs.
Learning Areas:
Chronic disease management and preventionConduct evaluation related to programs, research, and other areas of practice
Provision of health care to the public
Public health or related nursing
Public health or related research
Social and behavioral sciences
Learning Objectives:
Explain the importance of symptoms in the context of cancer care and cancer patient quality of life.
Describe how patient-reported symptom data can contribute to cancer control and cancer care.
Keyword(s): Cancer, Quality of Care
Qualified on the content I am responsible for because: I have been the principal and co-investigator on multiple studies of cancer survivorship and quality of life. I have authored or co-authored over 30 peer-reviewed papers in these areas. I conduct research on include cancer survivorship, quality of life, patient reported outcomes, the application of information technology, and survey methodology with the goal of improving the lives of cancer patients and survivors.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.