| Literature DB >> 19734128 |
Christine E Hill-Kayser1, Carolyn Vachani, Margaret K Hampshire, Linda A Jacobs, James M Metz.
Abstract
BACKGROUND: Survivorship care plans have been recommended by the Institute of Medicine for all cancer survivors. We implemented an Internet-based tool for creation of individualized survivorship care plans. To our knowledge, this is the first tool of this type to be designed and made publicly accessible.Entities:
Mesh:
Year: 2009 PMID: 19734128 PMCID: PMC2762859 DOI: 10.2196/jmir.1223
Source DB: PubMed Journal: J Med Internet Res ISSN: 1438-8871 Impact factor: 5.428
Figure 1OncoLife user interface. The OncoLife tool for creation of survivorship care plans is available via OncoLink and OncoLife websites
OncoLife queries and response options according to version (vers.)
| Pilot | Vers. 1 | Vers. 2a | Vers. 3a | Vers. 4 | ||
| Number of Users (Non-duplicate) | 40 | 1374 | 1124 | 805 | Recent Launch | |
| Response Options | ||||||
| Sex | Male | • | • | • | • | |
| Female | ||||||
| Race | Caucasian | • | • | • | • | |
| African American | ||||||
| Asian/Pacific Islander | ||||||
| Hispanic/Latino/a | ||||||
| Mixed Race | ||||||
| Other | ||||||
| Age at Diagnosis | Please select | • | • | • | • | |
| Current Age | Please select | • | • | • | • | |
| Highest Education Level | Grade School | • | • | • | • | |
| High School | ||||||
| Some College | ||||||
| College Degree | ||||||
| Graduate School | ||||||
| What is your relationship to the patient? | Self | • | • | • | ||
| Family member/friend | ||||||
| Health care provider | ||||||
| Have you ever been offered survivorship health information before? | Yes | • | • | • | ||
| No | ||||||
| Who is currently managing your health care needs? | Oncologist | • | • | • | ||
| PCP/internist | ||||||
| Oncologist and PCP | ||||||
| Other (specify) | ||||||
| What is your geographical location? | USA (select state) | • | • | • | ||
| Canada (select province) | ||||||
| Other country (select) | ||||||
| What type of cancer did you have? | Please select | • | • | • | • | • |
| Did you undergo surgery for this cancer? | Yes (select procedure) | • | • | • | • | • |
| No | ||||||
| Did you receive medication, intravenous or oral, for treatment of this cancer? | Yes (select medication[s]) | • | • | • | • | • |
| No | ||||||
| Did you receive intrathecal chemotherapy? | Yes (select medication) | • | • | • | • | • |
| No | ||||||
| Did you receive radiation therapy? | Yes (select site) | • | • | • | • | • |
| No | ||||||
| Did you receive radioiodine therapy (I-131)? | Yes | • | • | • | • | • |
| No | ||||||
| Have you ever been told you have a genetic abnormality or syndrome? | Yes | • | • | • | • | • |
| No | ||||||
| What is your menopausal status? (females only) | Menopause before cancer therapy | • | ||||
| Postmenopausal (due to surgery or chemo/radiotherapy) | ||||||
| Premenopausal | ||||||
| Perimenopausal | ||||||
| Not sure |
a Versions 2 and 3 differ only by survivorship care plans (SCP) generated.
Demographic information reported by users of OncoLife
| Demographic | Total n = 3343 | % | |
| Male | 957 | 28.6 | |
| Female | 2385 | 71.3 | |
| Caucasian | 2861 | 85.6 | |
| African American | 179 | 5.4 | |
| Asian/Pacific Islander | 91 | 3 | |
| Hispanic/Latino/a | 85 | 3 | |
| Mixed Race | 36 | 1 | |
| Other | 47 | 1 | |
| Unknown | 40 | 1 | |
| Grade School | 73 | 2 | |
| High School | 612 | 18.3 | |
| Some College | 699 | 20.9 | |
| College Degree | 1107 | 33.1 | |
| Graduate School | 811 | 24.3 | |
| Unknown | 40 | 1 | |
| n = 1880a | |||
| Self | 1198 | 64.2 | |
| Family member/friend | 221 | 12.4 | |
| Health care provider | 461 | 24.8 | |
| Nurse | 285 | 61.8b | |
| Nurse practitioner | 107 | 23.2b | |
| Physician | 48 | 10b | |
| Other health care | 26 | 6b | |
a Query added with implementation of version 2, so data available for n = 1880 users.
b Refers to percent of health care providers (n = 461)
Primary cancer diagnoses among users of OncoLife
| Primary Cancer Diagnosis/Site | Number of | % |
| Breast | 1537 | 45.9 |
| Hematologic | 401 | 12.0 |
| Gastrointestinal | 391 | 11.7 |
| Gynecologic | 287 | 8.6 |
| Genitourinary | 278 | 8.3 |
| Thoracic | 149 | 4.5 |
| Head & Neck | 90 | 3 |
| Melanoma | 69 | 2 |
| Central Nervous System | 59 | 2 |
| Thyroid | 46 | 1 |
| Sarcoma | 38 | 1 |
| Non-Melanoma Skin Cancer | 17 | < 1 |
| Other | 81 | 2 |
Figure 2Follow-up care and survivorship information offered to users of OncoLife
OncoLife user satisfaction survey queries and responses
| Response Options | Total Responses | Number Health Care Provider | Number Survivors/ Family Members/ Friends | ||
| How would you rate your experience completing this survey? | 1 = Poor | 0 | 0 | 0 | .39a |
| 2 = Fair | 5 (3) | 1(2) | 4 (5) | ||
| 3 = Good | 18 (12) | 11 (17) | 7 (8) | ||
| 4 = Very good | 43 (27) | 16 (25) | 27 (31) | ||
| 5 = Excellent | 84 (56) | 36 (56) | 48 (56) | ||
| How long did it take to complete (in minutes) (Free entry) | Mean | 6.7 | 4.4 | 7.2 | n/a |
| Median | 5 | 5 | 5 | ||
| Did you have all of the information needed to complete the questionnaire? | Yes | 138 (92) | 57 (89) | 81 (94) | .99 |
| No | 12 (8) | 7 (11) | 5 (6) | ||
| Was the information helpful?b | Yes | n/a | 83 (97) | n/a | |
| No | n/a | 3 (3) | |||
| Will you share your plan with your health care team?b | Yes | n/a | 71 (83) | n/a | |
| No | n/a | 15 (17) | |||
| How satisfied are you with the information provided to the patient?c | 1 = Poor | 0 | n/a | n/a | |
| 2 = Fair | 3 (5) | n/a | |||
| 3 = Good | 17 (27) | n/a | |||
| 4 = Very good | 15 (23) | n/a | |||
| 5 = Excellent | 29 (45) | n/a |
a For comparison of users responding “good” - “excellent” vs “fair” - “poor,” based on exact contingency test [23].
b Query posed to survivors/family members/friends only
c Query posed to health care providers only