The goal of the AYA HOPE Study was to learn about recruitment of AYAs, their cancer care and outcomes and to determine the feasibility of collecting survey and detailed medical record information on a representative population-based sample of AYA cancer survivors. Our response rate among eligible patients was 43%. This age group, particularly those ages 15–25 years, is mobile and difficult to follow due to educational and employment opportunities, marriage and other personal life changes.
Previous studies have shown that response rates of young adults are lower than for older adults [7
]. A survey of adult NHL survivors identified from a cancer registry had a 55% response rate, but patients were older and 2–5 years post diagnosis [7
]. Despite aggressive follow-up, one recent health survey in adolescents ages 13–17 years yielded a 40% response rate [8
]. These adolescents had been seen within the healthcare system in the previous year and were recruited by that system. A national study of childhood cancer survivors between 1994 and 2000 achieved a 62% completion rate with extensive resources [9
]. However, the denominator for the completion rate included only those subjects who expressed an interest in the study after being contacted by their treating institution. As indicated by our follow-up survey, once individuals agree to participate in a study, they are more likely to complete subsequent surveys. The response rate in our study might have been higher if, as in the NHL [7
] study, more time had elapsed since diagnosis. Some of the patients eligible for our study who refused may still have been under active treatment and may have agreed to participate once therapy was completed.
Males and non-Hispanic black and Hispanic patients were significantly less likely to participate, similar to differences reported for cancer clinical trials [10
]. Significantly lower enrollment for minority compared to white patients and for men compared to women was reported for surgical trials [11
]. This finding has been shown not only in cancer, but in other diseases as well [12
]. Although 37% of our respondents were racial/ethnic minorities, it is likely to have been higher if translated versions of the survey were available, as not speaking English was the primary reason for ineligibility among our population.
A variety of methods were used to maximize responses to the mailing. We enclosed a LIVESTRONG
bracelet that added interest and bulk to the packet. One registry initially used an overnight delivery service, but abandoned this within a month. Response rates were lower than with USPS. The overnight service did not leave packages if no one was home, had limited re-delivery, no forwarding addresses, and deliveries were limited to weekdays. While we used a variety of approaches to enhance our response rates, we did not send pre-notification letters or postcards. Research has suggested this may not increase the response rate [12
], but it would have identified incorrect addresses at a lower cost than mailing the complete packet.
Overall, 87% of the identified sample required at least one additional mailing or telephone contact. An address or telephone number could not be found for 16% of patients identified as eligible, similar to the 15% reported by the childhood cancer survivors study [9
]. Although we likely had the correct phone number for some patients, no one answered our calls. With the increased use of caller identification, patients may have been screening calls from unrecognized phone numbers. It is possible that calls originating from patients’ own medical institutions may have yielded better responses, although a response rate of only 40% was reported by a study conducted within patients in a healthcare organization [8
Some survivors refused to participate in any part of our study because of the HIPAA medical release form. Evidence from a community-based, randomized, mixed-mode survey (n
6,939) reported the inclusion of a minimally burdensome version of HIPAA authorization form reduced survey response rates by up to 15% [13
]. Simply requiring a signature reduces the response rate. Nelson reported that response rates were 58% at locations requiring no advanced permission to contact the individual compared to 27% for those requiring written permission from the individual [14
Although some staff used social networking websites to find addresses, we did not use this approach to communicate with patients because registries did not request IRB approval for this type of contact. We were concerned about the confidentiality of a social network contact and identification of the correct person. However, in future studies, social networking websites may be a useful method of contact [15
]. This may increase participation as email/web communication is used extensively among young people. However, methods to ensure patient confidentiality are required.
The majority of patients in our study completed the paper rather than the online version. Future studies might evaluate different approaches to increase participation and the use of online surveys. A web address included in the initial mailing that links to a well-designed website describing the study and reasons to participate, and includes the survey as well as other survivorship information might entice AYAs to participate. However, it is possible that AYAs simply prefer to complete the paper version of the survey. A study in Olmstead County found the inclusion of an internet option decreased the response rate [16
] while a study in Norway found no increase with the online option [17
]. One possibility is that unless thrown away, a paper survey is a constant reminder, whereas a computer can be turned off.