This study discusses the development and the process evaluation of an informative website for supporting breast cancer survivors and partners during the re-entry phase into ‘normal’ life shortly after completion of primary treatment. Quantitative and qualitative assessments of needs and preferences regarding post-treatment care were used for optimal tailoring of the content of the information as well as the way it is delivered to the target population’s wishes.
The informative website distinguishes itself from existing cancer-related websites by its explicit focus on the transition period after breast cancer and on both survivors and intimate partners. A clear-cut structure was aimed for to enhance easy retrieval of information and to prevent feelings of being flooded by information. The latter was avoided further by allowing visitors to select information tailored to their needs, as the subsections on most of the website’s main menus were presented as a list in which visitors could tick themes they would like to receive more information about. As a consequence, the content of the next page on each menu was personally composed by each visitor, providing him/her with a tailored information package. By allowing each visitor to select him/herself what information he/she needs the website differs from classic ‘computer-tailoring’, in which a computerized ‘expert system’ generates the personally relevant information based on visitors’ characteristics. For example, in another recently developed cancer information website visitors needed to complete a survey (regarding their demographics, cancer diagnosis and cancer treatment) which resulted in the generation of information that is specific to their situation. As medical characteristics are generally unrelated to survivors’ and partners’ care needs and given the irrelevance of sociodemographic characteristics regarding partners’ needs, these characteristics may not make up a solid basis for predicting care needs shortly after completion of primary treatment. Previous research did find that profiles of survivors characterized by high physical and psychological distress tend to report higher levels of needs and that partners’ emotional illness representations and negative perception of the duration of the condition of their spouse are associated with their care needs. However, gathering information about these characteristics will not permit to determine what specific type of information (e.g. regarding fatigue, weight gain, lymphedema, etc.) a visitor of the website requires. Given each individual’s unique needs and experiences during the transition period, with regard to the present website a different approach was used by allowing each visitor to select him/herself what type of information he/she desires at that particular moment.
A previous needs assessment study revealed that of those survivors reporting care needs, 16 to 24 percent (depending on the rehabilitation topic in question) desired information and support by means of an informative website. Partners’ preference for receiving information and support through an informative website was even more pronounced, as 22 to 37% of partners in need desired this type of care provision. In line with the fact that on-line care provision is not desired by all survivors and partners, not all participants consulted the new website. Although participants agreed to the course of the study in advance (participation in baseline and post-questionnaires with access to the website during the intervening 10 to 12 weeks) and received information about the website and a personal login code after completion of the baseline measurement, only 21 survivors (57%) and 8 partners (42%) actually consulted the website. Not visiting the website was explained by a lack of interest in cancer-related information at that moment, a lack of time or a not being acquainted with the Internet. The latter argument was not corroborated by analyses as visitors and non-visitors did not differ regarding their acquaintance with the Internet nor regarding their previous experiences in searching for on-line cancer-related information. The actual exposure of the on-line information to the target population did not measure up to its theoretical potential, given the fact that a large majority of survivors and partners have access to the Internet[8–10]. Other ways of receiving information and support, preferred by survivors and partners (e.g. informative brochures, consults with a psychologist, information sessions, etc.) may be favored by non-visitors and may constitute an essential part of post-treatment care provision.
Differences between participants who visited the informative website and those who did not could help identify eligible candidates for future use of the website. Previous research indicated that cancer patients’/survivors’ use of the Internet for cancer-related information and their participation in Internet-based cancer support groups is associated with aspects of a high socio-economic status, such as income, education and employment[8, 11, 23, 41]. In the present study, survivors who visited the website were more likely to have a higher household income, yet this did not apply for their partners. Contrary to expectations, survivors’ nor partners’ education and employment status were associated with visiting the website. Compared to non-visitors of the website, larger proportions of survivors who visited the website had an intimate partner. Only among partners was younger age associated with using the website. This association was also expected to hold for survivors[8, 11], but was not confirmed by the results of the present study.
Research comparing different phases of the illness continuum found that the frequency of searching the Internet for cancer-related information is lower during survivorship compared to the diagnosis and treatment phase. Nevertheless, 71% of cancer survivors still searches the Internet at least several times a year. The present study’s focus on the highly specific survivorship stage shortly after treatment revealed that survivors are more inclined to consult on-line cancer-related information when treatment is completed for a longer amount a time. As a matter of fact, visitors of the website had ended treatment about 4 months ago, whereas non-visitors were on average 3 months post-treatment. It is perhaps not unlikely that the informative website is relevant to survivors and partners at later stages of survivorship. Future research ought to assess the most suitable phases of the post-treatment trajectory for on-line provision information and support.
In line with studies on the determinants of participation in Internet-based support groups use of the informative website was generally not associated with physical and psychosocial characteristics[41, 42]. The only significant associations found in the present study were those between visiting the website and higher self esteem and lower levels of social support of respectively survivors and partners. In contrast to literature on women who were newly diagnosed with breast cancer, survivors’ nor partners’ care needs were associated with visiting the website. Given the small sample sizes of the present study, results need to be confirmed by future studies. Moreover, future research should not only assess the use of an informative website according to survivors’ and partners’ characteristics, it should also be investigated whether the effectiveness of on-line provision of cancer-related information differs according to these characteristics, taking into account participants’ physical and psychosocial profiles.
Survivors and partners who did visit the website generally evaluated its content and lay-out positively. The Breast cancer menu was the menu visited by the highest number of participants on the survivor section as well as the partner section (together with Understanding my partner). Compared to the other subsections on the Breast cancer menu (‘What is breast cancer’, ‘Research’, ‘Treatment’), the ‘After treatment’ subsection was visited most. This subsection discussed the following themes: ‘Control and follow-up’, ‘Reconstructive surgery’, ‘External prosthesis’ and ‘cure?’ Visitors’ interest in these themes is in line with the fact that survivors as well as partners in the previous focus group interviews mentioned that they would like these topics to be included on an informative website. One should, however, take into account that the Breast cancer menu is the first menu on the survivor and partner section and therefore it might be the most obvious menu to consult in discovering the new website. The positive evaluation by partners of the Supporting my partner menu is not surprising, considering the fact that it deals with one of the highest unmet needs reported by intimate partners. The needs assessment conducted prior to the development of the website, revealed that only 2.4% of partners who needed more information and support on how to support their spouse, stated that this need had totally been met.
The focus group interviews indicated that survivors and partners desired to retrieve addresses where to find help. In accordance to these results, in the present study the Help guide menu was highly valued by survivors and partners. The My complaints menu was judged rather negatively by partners. In the needs assessment a relatively small proportion of partners needed information regarding their own physical (16.7%) and psychological functioning (20.3%). Although this topic may not be of paramount importance to the majority of partners, the needs assessment revealed that those partners in need for such information, report that these needs are highly unmet. Therefore, for some partners, inclusion of this topic on the website might be an added value. However, interpretation of visitors’ rating of the different menus is equivocal as it is unclear whether survivors’ and partners’ scores reflect an evaluation of the quality of the menu content (whether the information is detailed enough, understandable, complete etc.) or an evaluation of its relevance to participants (partly reflecting their care needs).
The website was generally rated as interesting, informative and relevant to participants. Nonetheless, several survivors and partners made a remark concerning the impersonal and vague nature of the on-line information. The ability to compose an information package tailored to their personal situation seemed not to suffice in making all visitors feel as if the website implied a personal approach. These feelings are not unexpected considering the fact that even tailored interventions, that produce highly individualized feedback, are considered as ‘applying to me specifically’ by only about half of the users[44, 45]. Nevertheless, some of the information on the website ought to be revised in order to make it less general and impersonal. For example, visitors desired more specific information regarding their (spouse’s) own prognosis and chances of recurrence. The information on the website regarding recurrence was limited to the average survival rate of breast cancer survivors and factors influencing the chance of recurrence (cancer stage at diagnosis, tumor size, etc.). In particular, the accompanying statements on the website that percentages of survival cannot be translated to each individual (yet ought to be discussed with the attending physician) might have led visitors to judge the information as unsatisfactory and impersonal.
Some limitations of this study should be acknowledged. Given the small sample sizes caution is called for regarding the representativeness and generalization of results. As no characteristics of non-responders were obtained, nor reasons for not participating in the questionnaire study, selection bias cannot be ruled out. One can, for example, not rule out that participants were more acquainted with the Internet compared to those who chose not to participate. Nor can one assure that the participants’ psychological well-being is representative of the target population. Furthermore, one might hypothesize that the large number of questionnaires led some survivors and partners not to participate. Moreover, given the limited statistical power characteristic of analysis within small samples sizes, one cannot rule out that visitors and non-visitors might differ more from one another than was revealed in this study.