The impact of combining human and online supportive resources for prostate cancer patients
Background Prostate cancer patients’ needs for information and support have been previously addressed by both mentoring and interactive services.
Objective To determine whether combining computer-based support with a human cancer mentor would benefit prostate cancer patients more than either intervention alone.
Methods Newly diagnosed prostate cancer patients from 3 centers were randomly assigned to receive either: a web-based system of information and support; or telephone and e-mail support from a trained cancer information mentor; or both interventions.
Results The combined condition improved several quality-of-life outcomes more than the individual interventions alone, but these results were few and scattered.
Limitations Offering Internet (computer) access to all potential subjects may have made some computer nonusers less likely to participate, biasing the sample toward relatively advantaged men.
Conclusions Combining human and computer-based interventions did not produce the expected much stronger benefits to patients. Given the costs involved, the computer-based system alone is likely preferable.
Funding/sponsorship Grant R01CA114539 from the National Cancer Institute
Accepted for publication February 8, 2017
Corresondence Robert P Hawkins, PhD; rhawkins@wisc.edu
Disclosures The authors report no disclosures/conflicts of interest.
Citation JCSO 2017;15(6):e321-e329
©2017 Frontline Medical Communications
doi https://doi.org/10.12788/jcso.0330
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Participants assigned to the CHESS or CHESS+Mentor conditions were also offered training in using CHESS (basically a guided tour), which typically took about 30 minutes on the telephone but was occasionally done in-person.
CHESS intervention. In creating CHESS for prostate cancer patients, a combination of patient needs assessments, focus groups with patients and family members, and clinician expertise helped us identify the needs, coping mechanisms, and relevant medical information to help patients respond to the disease. An article describing development of the CHESS Prostate Cancer Module22 presents how those different services address patient needs for information, communication, and support, or build skills.
,Most of these services were present in CHESS for other diseases, but several were newly created to meet needs of prostate cancer patients and partners, such as a decision map tool and a module on managing sexual problems.22 Also, patients expressed frustration at being overwhelmed by the volume of information and said they would prefer to focus only on what was most relevant, so we created an alternative navigation structure on the CHESS homepage. Using terms suggested by focus groups of prostate cancer survivors and their spouses, we devised a navigation structure called Step-by-Step that identified 6 typical sequential steps of men’s experience with prostate cancer. Clicking on a step would take a patient to a menu focused on actions and considerations specific to that disease step, links to information most relevant at that step, and suggested questions to ask oneself and one’s doctor.
Mentor intervention. The cancer information mentor who made most of the calls to patients was an experienced information specialist with the Cancer Information Service and had served as the expert for the CHESS Ask an Expert service for 6 years. She was highly knowledgeable about prostate cancer and patient information needs. Her additional training for this study focused on taking advantage of repeated contacts with the participants and how to set limits to avoid any semblance of psychological counseling. At recruitment, we made clear that a male mentor was also available if the participant would prefer to discuss sensitive topics with another man. The male mentor was experienced in the Man-to-Man program and received additional training for this role, but he was used for only 1% of all contacts.
During calls, the mentor had Internet access to a range of NCI, ACS, and other resources. She could help interpret information the participant already possessed as well as refer him to other public resources, including those on the Internet. CHESS software designers created an additional interface for the mentor that handled call scheduling and allowed her to record the topics of conversations, her responses and recommendations, and her overall ratings of patient preparedness and satisfaction. Using this interface allowed the mentor to quickly review a participant’s status and focus the conversation on issues raised by past conversations or scheduled treatment events. The mentor calls were audiorecorded and reviewed frequently by the project director during the early months of intervention and less frequently thereafter to ensure adherence to the protocol.
The mentor telephoned weekly during the first month of intervention, then twice during the second month, and once a month during the final 4 months of the intervention (ie, 10 scheduled calls, though patients could also initiate additional calls). Calls were scheduled through a combination of telephone contact and e-mail according to the patient’s preference. Call length ranged from 5 minutes to an hour, with the average about 12 minutes (the first call tended to be considerably longer, and was scheduled for 45 minutes). About 10%-15% of participants in the Mentor conditions initiated calls to the mentor to obtain additional support, and about 15% of scheduled calls in fact took place as e-mail exchanges. A few calls were missed because of scheduling difficulties, and some participants stopped scheduling the last few calls, but the average number of full calls or e-mails was 6.41 per participant.
CHESS+Mentor intervention. For the CHESS+Mentor condition, the interactions and resources used were similar to those of the Mentor-only condition, but the interface also provided the mentor with a summary of the participant’s recent CHESS use and any concerns reported to CHESS, which helped the mentor assess knowledge and make tailored recommendations. The mentor could also refer participants to specific resources within CHESS, aided by knowledge of what parts of CHESS had or had not been used.
Assessment methods
Patients were given surveys at the baseline visit to complete and mail back to research staff before randomization. Follow-up surveys were mailed to patients at 2, 6, 12, and 24 weeks post intervention access, and patients returned the surveys by mail. Patient withdrawal rates were about 3%.
