Head and neck (H&N) cancer includes malignant tumours arising from the mucosa of the upper aerodigestive tract from nasopharynx to larynx including the oral cavity, i.e. pharynx, lip and oral cavity and larynx [1
]. This group of cancers is amongst the six most prevalent cancers in the world [2
] and some of them are associated with high mortality rates [3
Previous literature has suggested that H&N cancer can have a negative influence on quality of life (QoL) through negative physical and psychosocial impacts including swallowing difficulties, impaired speech, problems in physical appearance, anxiety, depression, fear of relapse and loss of self-esteem e.g. [4
]. However, it has also been suggested that some factors may mitigate or aggravate the impact of cancer generally on a patient’s psychological wellbeing [4
]. For example, there are many strategies that people diagnosed with H&N cancer can employ which may influence health outcomes. One such strategy is coping. In general, higher levels of adaptive coping have been found to be related to better QoL of AIDS patients [6
]. Other psychological factors such as anxiety and depression have also been widely linked to reduced levels of QoL for cancer patients in general e.g. [7
] and other non-cancerous conditions e.g. [8
Self-efficacy has been shown to be related to better coping and relatively low levels of psychological distress in some chronic diseases like HIV [9
]. In line with this, it has been found that people who receive social support have stronger self-efficacy beliefs, which subsequently may affect their health-related outcomes [10
]. This mediating role of social support on psychological outcomes has been found in relation to a number of health conditions e.g. [11
]. Related to this, studies on social networks suggest that such networks can also be related to health-related quality of life (HRQoL) and, in addition, may have a mediating effect on anxiety and depression amongst cancer patients. For example, Michael et al. [12
] found that social interaction at pre-diagnosis level was a significant factor in future HRQoL among women who experienced breast cancer. The evidence for social networks establishes that social isolation increases the risk of mortality after being diagnosed with breast cancer, with the buffering effect for reduction being provided by relatives or friends and participation in activities outside the home e.g. [13
]. Social networks have also been found to play an important role in enhancing the coping ability of patients with laryngeal and hypopharyngeal cancer [14
In the last few decades, an increasing number of people have explored the internet for support, information and advice related to many aspects of health [15
], and there is an expanding number of online support groups (OSGs) available for different health conditions including cancer [16
]. Online support groups may have many advantages over conventional face-to-face groups and may have several benefits to their users; for example, they have been found to be associated with reduction in levels of both physiological and psychological stress in their members [17
]. These groups can increase social support by increasing self-esteem, personal empowerment and functional status and decreasing depression, feelings of helplessness, distress and social isolation e.g. [18
It may be that people with H&N cancer, especially those who have impairment in speech or alteration in facial appearance, might find OSGs a suitable environment in which they can socialise and get support in more comfortable ways without feelings of embarrassment regarding their situation. Nevertheless, despite the high incidence of H&N cancer and its influence on the HRQoL of patients and the beneficial role of OSGs, there has been no research, to date, on the association between OSGs and HRQoL for people with H&N cancer or on the psychosocial factors that might mediate this association.
Therefore, the aim of this study was to examine the association between using online support groups and health-related quality of life and examine the psychosocial factors (social network, self-efficacy, anxiety, depression, adjustment and empowerment) that may influence this association.
The main finding of this study was an association between using H&N cancer-related OSG and HRQoL of participants, such that longer use was linked to better HRQoL. Moreover, this association was mediated by depression and adjustment. Anxiety, self-efficacy and empowerment were found to have a role in the mediation process by mediating the association between the use of OSGs and depression and adjustment.
The findings of this study are consistent with previous literature that reports a link between OSG use and better HRQoL for HIV/AIDS [6
]. It is also consistent with a meta-analysis of 28 studies exploring the health-related outcomes associated with computer-mediated support groups [43
Previous studies suggested that using OSGs including group communication and educational components lead to an improvement in HRQoL directly or indirectly through increasing the use of adaptive coping and decreasing the use of maladaptive coping [6
]. In line with this, the findings of the current study suggested that depression, adjustment, self-efficacy, anxiety and empowerment, all act to mediate the association between duration of use and HRQoL directly or indirectly. The results relating to self-efficacy, adjustment and empowerment are in line with previous literature [6
], in which the authors have investigated the possible mechanism through which participation in OSGs might encourage user empowerment for people living with HIV/AIDS. Findings of that study proposed that participation in OSGs results in empowering processes, which in turn have a positive influence on psychosocial outcomes as measured by coping, self-care self-efficacy and HRQoL. This consistency in findings might indicate that the mechanisms underlying the mediation process between using OSGs and HRQoL is similar despite differences in the nature of health condition under investigation.
With regard to the role of anxiety and depression, no previous studies have investigated the mediating role of anxiety and depression in the OSG-HRQoL association. However, some studies on different health conditions have found negative associations between using OSGs and depressive symptoms e.g. [47
] as well as feelings of dental anxiety [48
]. Additionally, the literature indicated that depression and anxiety are widely known to have a negative association with at least one aspect of HRQoL in people with H&N cancer [50
] or other cancers or non-cancerous health conditions e.g. [7
The duration of using OSGs was also found to be directly related to depression, anxiety, adjustment, self-efficacy and empowerment. Those participants who had been using OSGs for a longer time had lower levels of anxiety and depression, lower negative adjustment (in terms of negative coping strategies such as helpless–hopeless, anxious preoccupation, avoidance and fatalism), higher levels of empowerment processes (in terms of receiving social support, finding positive meaning, receiving useful information and helping others) and a greater belief that they are capable of performing well (i.e. self-efficacy).
In the present study, there was no association between the duration of use and social network. It is possible that people with H&N cancer might be part of non-virtual social networks and receive social support from other sources, apart from OSGs.
Although all the proposed mediators were found to play a role in the association between OSGs and HRQoL (except social network), the results indicated that, while controlling for all the proposed mediators, only levels of depression and adjustment were found to be direct mediators, such that participants who had been using OSGs a longer time reported low levels of depression and adjustment and in turn reported better HRQoL. Nevertheless, whilst the other variables were not mediators of the OSG-HRQoL association, they were found to play a role in other associations within the pathway (see Fig. 3
). In general, participants who had been using OSGs a longer time were less depressed, less anxious, had fewer tendencies for the negative adjustment behaviours, and confident that they were capable of performing, felt more empowered to cope with their illness and in turn had better HRQoL. Interestingly, although the worldwide incidence of oral cancer is more prevalent in males than females in the majority of countries [44
], in our study the male:female ratio was almost equal. It may be, as has been reported previously, that women are more likely to use the Internet for the purposes of interpersonal communication [45
] and are more interested generally in health-related topics [46
There were a number of limitations in the current study which need to be noted when interpreting the findings. Most importantly, despite testing for mediation processes, the present study was cross-sectional. Whilst mediation was tested using techniques outlined within the literature [40
], temporality cannot be assumed with cross-sectional data. The pathways proposed here are therefore exploratory and need to be tested longitudinally in future work. In the present study, variables such as depression and anxiety were measured at the time of taking the survey. That is, they were the participant’s current reported status. It is likely, however, that depression, for example, may change as a result of length of survivorship. A future longitudinal study should collect information on depression and the other time-varying variables before, during and immediately after treatment. In addition, from our data it is not possible to ascertain whether the use of OSGs improved HRQoL or vice versa; that is, people who had better HRQoL were more likely to use OSGs. Further, given that we found that more than half of participants had been using OSGs for 5 years or more, it may be that longer survivorship improved their HRQoL. A further longitudinal study would be needed to address this important question.
Participation in the study was optional, and therefore it may be that only people with positive experiences of OSGs agreed to participate, or perhaps those who were adjusting better to their condition or treatment. It may be that differing results would have been obtained if people who had different experiences or were poorly adjusted to their condition had been included. In addition, given the study’s online methodology, it was not possible to collect information on stage and exact site of the cancer, or types of treatment, from patient’s notes. Therefore, such information was reported by the participants themselves and remains unverifiable. It may be that differing results might have been obtained if this information were collected from an independent source (e.g. patient’s notes; clinician).
The study used an online survey because it felt that it might be a convenient way for collecting data from people who are in various geographic areas in the world and have access to the internet. However, the literature suggests that there are some disadvantages for online surveys, including issues of non-representativeness of the sample, low response rates, non-responses and lack of validity of the data [51
]. In addition, the study recruited participants from the internet (OSGs) and this methodology can have drawbacks such as errors in self-reported demographics and the risk of self-selection bias, the possibility of duplicate or fraudulent responses and the inability, by the research team, to verify the cancer status of participants [52
]. However, given the absence of financial incentives and the length of the questionnaire, it seems unlikely that participants would duplicate their responses or misrepresent themselves as being a cancer patient [53
]. As has been noted that there are a number of limitations when conducting online research, however, these authors conclude that whilst being aware of such limitations, online research can be a cost-effective method of recruiting and a very useful tool for exploring health-related issues.
The inclusion criteria for this study included people who used OSGs and had been diagnosed with H&N cancer at any point during their life. Indeed, the results of the study showed that the majority of participants (87.4%) were in their post-treatment stages. This strategy may have drawbacks in that people at different stages of cancer and/or its treatment may have different perspectives from each other and may differ from people who have already finished their treatment in terms of their use and association with OSGs, as well as their responses to the study questionnaires.
Although several measures were used to assess the use of OSGs, only the main outcome variable, duration of use, was found to have a significant association with HRQoL. Since this measure is reported by participants, it could be subject to self-report bias. It is also a rather crude measure and does not consider the level of participation within the group, including the number of messages posted and participant activity in different periods, or their daily use. Future studies should investigate more closely the association with the actual levels of participation in terms of posting messages as well as the daily and monthly rate of use.
Nevertheless, despite these limitations, the present study suggests an exploratory model of potential pathways linking OSG use and HRQoL for those with H&N cancer which could be investigated in future studies, with H&N cancer as well as other cancers or chronic health conditions.
There are a number of implications for health care professionals from these findings when considering their support for people with H&N cancer. Those professionals may want to encourage patients to use OSGs to seek support and information related to their condition. They may also provide help to make patients aware of the internet for support and about how to facilitate patients’ skills with this technology, or provide training themselves.
The findings of this research as well as previous literature [18
] suggest that most people who live with H&N cancer and most of the users of H&N cancer OSGs were older people. If we consider this, then we could argue that efforts should be directed toward providing access to the internet among those people, perhaps by providing them with access to equipment, training and free internet, as well as informing them about relevant OSGs and websites.