M.K. Hampshire

A randomized, controlled study of Internet peer-to-peer interactions among women newly diagnosed with breast cancer

Objective: Peer‐to‐peer interactions are associated with enhanced psychosocial adjustment among women with breast cancer. Millions of women with cancer and others with various health conditions use the Internet to establish peer relationships, usually without professional moderation. This paper reports findings from the first randomized, controlled study of the benefits of these types of Internet‐based peer interactions.

Recruitment of Patients Into an Internet-Based Clinical Trials Database: The Experience of OncoLink and the National Colorectal Cancer Research Alliance

PURPOSE In March 2001, the National Colorectal Cancer Research Alliance (NCCRA) and OncoLink (http://www.oncolink.org) established a database to facilitate patient enrollment onto clinical trials. This study describes the population registering with the database and identifies discrepancies between individuals registering through the Internet and those registering through a telephone call center. METHODS Participants registered with the NCCRA/OncoLink database through the Internet or a telephone call center. All participants entering the database completed a questionnaire regarding basic demographics, colon cancer risk factors, and indicated how they became aware of the database. Comparisons were made between individuals registering through the Internet and those registering through the telephone call center. RESULTS A total of 2,162 participants registered during the first 16 months of the database. Most patients registered through the Internet rather than the telephone call center (88% v 12%; P < .001). More females than males registered (73% v 27%; P < .001). The majority (89%) were white. Participants registering through the Internet were younger than those registering through the call center (mean, 48.8 v 55.0 years; P < .001). There was no difference between the two groups with regard to sex or ethnicity. CONCLUSION The Internet has the potential to increase the likelihood that interested individuals find appropriate clinical trials. Some of the discrepancies that are known to exist for access to the Internet were also seen for those registering with the database through the Internet. Despite these differences, the potential to increase clinical trial enrollment with this type of Internet-based database is high.

Clinical trial resources on the internet must be designed to reach underrepresented minorities.

PURPOSEInternet-based clinical trial information services are being developed to increase recruitment to studies. However, there are limited data that evaluate their ability to reach elderly and underrepresented minority populations. This study was designed to evaluate the ability of an established clinical trials registry to reach these populations based on expected Internet use. PATIENTS AND METHODSThis study compares general Internet users to participants who enrolled in an Internet based colorectal cancer clinical trials registry established by OncoLink (www.oncolink.org) and the National Colorectal Cancer Research Alliance. Observed rates of demographic groupings were compared to those established for general Internet users. RESULTSTwo thousand, four hundred and thirty-seven participants from the continental United States used the Internet to register for the database. New England, the Mid-Atlantic region, and the Southeast had the highest relative frequency of participation in the database, whereas the Upper Midwest, California, and the South had the lowest rates. Compared to general Internet users, there was an overrepresentation of women (73% vs. 50%) and participants over 55 years old (27% vs. 14%). However, there was an underrepresentation of minorities (10.3% vs. 22%), particularly African Americans (3.1% vs. 8%) and Hispanics (2.8% vs. 9%). DISCUSSIONThe Internet is a growing medium for registry into clinical trials databases. However, even taking into account the selection bias of Internet accessibility, there are still widely disparate demographics between general Internet users and those registering for clinical trials, particularly the underrepresentation of minorities. Internet-based educational and recruitment services for clinical trials must be designed to reach these underrepresented minorities to avoid selection biases in future clinical trials.

First report of cancer survivor utilization of comprehensive internet-based survivorship care plans

20547 Background: Over the past three decades, the number of cancer survivors in the US has more than tripled (MMWR 2004), and these patients remain at risk for late effects resulting from cancer t...

First Report of Worldwide Use of Internet-Based Survivorship Care Plans by Lung Cancer Survivors

Abstract Background In the past 3 decades, the number of cancer survivors has more than tripled (MMWR, 2004). Although long-term success in the treatment of lung cancer remains limited, lung cancer survivors remain an important subset of the survivor population and might be at risk for late effects resulting from treatment and disease processes. Multiple groups have shown survivor care to be inadequate, and the Institute of Medicine has identified a need for survivorship care plans (SCPs) for all cancer survivors. Here, we describe for the first time use patterns of the first personalized Web-based SCP by lung cancer survivors. Patients and Methods A program for creation of SCP, OncoLife, was made publicly accessible through OncoLink (available at: http://www.oncolink.org ), a Web site serving over 3.9 million pages per month to 385,000 unique IP addresses (August 2007) and based at the University of Pennsylvania. Data was maintained anonymously and securely, and collection and analysis processes were reviewed by the institutional review board. Users responded to queries regarding demographics, diagnosis, and treatment and received comprehensive, individualized guidelines for future care addressing issues such as late toxicity, second malignancy, fertility, and tumor recurrence. Results From May 2007 to May 2008, 2573 individuals completed OncoLife surveys. Users described themselves as cancer survivors (66%), family members/friends of survivors (12%), and healthcare providers (23%), and identified themselves as residents of 46 states and 15 countries. Median age at cancer diagnosis was 48 years (range, 18–100 years), and median current age was 51 years (19 to > 100 years). Users were 86% white and 71% female. Lung cancer survivors comprised 5% (n = 113) of the population of OncoLife users. Lung cancer survivors were 51% female and 93% white. Chemotherapy was delivered to 75% of patients with lung cancer, with platinum- and paclitaxel-based agents being the most common drugs used (93% and 57%, respectively). Radiation was used in the treatment of 57% of lung cancer survivors and surgery in treatment of 38%. Most lung cancer survivors (84%) reported receiving follow-up care from a dedicated oncologist, although only 36% reported being followed by a primary care provider (PCP). Only 10% reported receiving survivorship information at the conclusion of therapy. Conclusions OncoLife represents the first Web-based program for creation of SCP, and patients, family members, and healthcare providers appear willing to use this type of tool. Most lung cancer survivors have received multimodality care, placing them at risk for treatment-related late effects. Most survivors do not report receiving routine care from a PCP, so attention to survivor healthcare needs by the oncology community is particularly important. Future versions of OncoLife will strive for increased accessibility and use in this underrepresented population.

Clinical trial resources on the Internet must be designed to reach underrepresented minorities

6114 Background: Internet based clinical trial information services are being developed to increase recruitment to studies. However, there are limited data that evaluate their ability to reach elderly and underrepresented minority populations. This study was designed to evaluate the ability of an established clinical trials registry to reach these populations based on expected Internet utilization. Methods: This study compares general Internet users to patients who enrolled to an Internet based colorectal cancer clinical trials registry established by OncoLink (http://www.oncolink.org) and the National Colorectal Cancer Research Alliance (NCCRA). Observed rates of demographic groupings were compared to those established for general Internet users. Results: 2437 patients from the continental United States used the Internet to register for the OncoLink/NCCRA database. The highest registration rates were from the Mid-Atlantic, Industrial Midwest, and Southeast. The lowest rates of representation were from th...

The patient population using the Internet differs from the population of patients found in the clinic: Implications for online clinical matching programs

6138 Background: Enrollment of adult cancer patients into clinical trials remains low. Clinical trials matching services offered through the Internet can potentially increase the rate of clinical trial enrollment. However, data describing the differences between the patient population using the Internet and the general population found in the clinic are limited. METHODS A validated questionnaire assessing basic demographics and attitudes towards clinical trials was offered to 609 patients through the OncoLink website ( www.oncolink.org ) and two radiation oncology clinics. The questionnaire was completed by 439 (72%) patients online and 166 (28%) patients in the clinic. RESULTS Online patients were more likely to be female (71% vs. 39%, p<0.001), younger (mean age: 52.8 vs. 55.8 yrs, p=0.02), and Caucasian (89% vs. 65%, p<0.001). More clinic patients were African-American (26% vs. 3%, p<0.001). More online patients were interested in learning about clinical trials (94% vs. 83%, p<0.001); however, there was no difference in the rate of current or previous clinical trial enrollment (23% vs. 24%, p=0.73). Online patients were more likely to have explored any information regarding clinical trials (72% vs. 59%, p=0.002). There was no difference in rates of patients obtaining information on clinical trials from health care professionals, other patients, or other media. Patients also differed in their expectations of clinical trials. More clinic patients indicated they would need a >50% chance of benefiting from a trial (45% vs. 22%, p<0.001) and/or a <10% chance of serious toxicity from a trial (43% vs. 35%, p<0.01) in order for them to enroll on that trial. CONCLUSIONS The population of patients who are using the Internet differs significantly from patients seen in the clinic. These differences may potentially bias patient populations of studies that utilize the Internet to enroll patients. Direct comparisons of patients enrolling in studies through the Internet and those enrolling in studies through the clinic are needed. No significant financial relationships to disclose.