These findings begin to inform our understanding of HNSCC patients' informational needs and their preferred modes of delivery. Collectively, the majority of patients were interested in receiving more information about treatment and its side effects as well as how to stay healthy after treatment. In addition, patients were receptive to receiving information at multiple time points throughout the cancer trajectory, but most notably at diagnosis and around the time of treatment. Younger patients were more likely to desire receiving information at diagnosis compared to older patients. Indeed, other studies have noted younger age to be a significant predictor of seeking additional information when making treatment decisions [20
]. Similarly, younger gynecologic and breast cancer survivors were more likely than their older counterparts to desire receiving additional information in general, particularly pertaining to emotional and social needs [21
Although male and female patients did not differ on the total number of informational needs they reported, women were more likely to desire information about coping with emotional needs and stress compared to men. This is consistent with the observation that men are less likely to participate in psychosocial programs than women [24
]; however, a previous study of male cancer patients receiving active treatment noted that nearly half of the surveyed patients desired information and support even though few men actually took part in any education or counseling services [25
]. The patients in that study expressed interest in attending informational programs in which they could learn about various topics including nutrition, stress management, and sexual functioning [25
]. Therefore, it is likely that the manner in which such programs are presented or marketed to patients influences the acceptability and uptake of such programs among specific subgroups, such as men.
Although none of the demographic factors was associated with number of informational needs, patients with early-stage disease were more likely to report having 5 or more informational needs. Further, we confirmed prior findings that having more informational needs was associated with greater distress [10
]. Therefore, future studies may be developed to evaluate whether addressing HNSCC patients' informational needs will be beneficial in terms of reducing patient distress and enhancing psychosocial functioning.
With respect to preferred modes of delivery, our findings indicate that a greater percentage of patients preferred receiving information in a format that is available or accessible from home (i.e., Internet, DVD, or pamphlets/booklets), rather than in individual or group formats held in-person at a hospital or healthcare setting. This is consistent with previous research showing poor compliance with programs that entail in-person attendance at hospital-based programs [27
]. Poor attendance may be attributed, in part, to the challenge of scheduling programs around appointments with physicians, nurses, and rehabilitation specialists. Patient fatigue and burden may also make it difficult to retain any information delivered in hospital-based programs that occur after healthcare appointments (i.e. information overload). As a result, informational programs that require in-person attendance or multiple interactions may be a significant barrier to participation among HNSCC patients [27
Alternative options for delivering programs, which do not require in-person attendance and could be accessed at the patient's convenience, would greatly reduce or eliminate such barriers and make these programs more appealing and acceptable to patients. Of particular note is the finding that HNSCC patients are receptive to Internet-based programs. Further, a high percentage of patients in the present study reported having a computer and Internet access (84% and 90%, respectively), which reflects an overall growing trend of increasing Internet access and use in the United States [30
]. In fact, reported computer and Internet use in the present study is higher than that reported in an earlier study of HNSCC patients in which 48% of participants had never used a computer [31
This finding also complements other recent data suggesting that Internet-based programs are growing in acceptability among cancer patients [21
], although many of these studies were conducted among female cancer patients. Indeed, in the present study, women were more interested in receiving an Internet-based program and were slightly more likely to own a computer compared to men. Higher educational level was also associated with preference for an Internet-based program, although it was not associated with a greater likelihood of owning a computer or access to the Internet. However, older patients (those 65 years or older) were less likely than younger patients to have Internet access. Despite age-related differences in access
to the Internet, older age was not associated with less preference for an Internet-based program. Therefore, if access issues can be effectively addressed, patient acceptability of Internet-based programs may actually be relatively high across all age groups. But until such access issues are resolved, a combination of approaches for information delivery may be essential for disseminating important health information across all patient subgroups.
The present study has several limitations. First, the sample size is modest and based on convenience sampling. As a result, we were not able to investigate, in detail, informational needs and preferences within specific patient subgroups. Second, this was a cross-sectional assessment of patients at one point in time, but informational needs and preferences may change over time and across the cancer trajectory. Third, the patient population was racially/ethnically homogeneous and may not be representative of HNSCC patients in general. A broader sampling of HNSCC patients across multiple institutions may yield greater differences in socioeconomic status and racial/ethnic diversity. However, the findings from the present study begin to inform our understanding of the informational needs and preferences of HNSCC patients. More importantly, these data demonstrate a growing awareness of and receptivity to Internet-based programs and health technology in this patient population.
In conclusion, few programs have been developed for HNSCC patients despite empirical data demonstrating that patients have considerable informational needs that are not being adequately addressed [6
]. Findings from our study suggest that patients are interested in treatment-related information, treatment side effects, and how to maintain their health after treatment. In addition, our findings indicate patient preferences for content that is viewable at home, including Internet programming. Given advances in information technology, receptivity to information delivered via Internet-based or multimedia DVD programs unlocks new opportunities for health promotion programs to be developed for this patient population with high informational needs and few available resources.