Availability and use of web-based interventions for patients with head and neck cancer: a scoping review

For the purpose of this review, web-based interventions were operationally defined as ‘a primarily self-guided intervention programme that is executed by means of a prescriptive online programme operated through a website as sources of health information for patients’ [25]. As this scoping review melded empirical literature and websites, a separate search strategy was required for each type of evidence.

Overall, very few studies provided information on the pre-treatment phase of the HNC trajectory, with one of the papers addressing the preparedness of HNC patients for surgery, which was specific to those undergoing a laryngectomy [37]. Findings for this targeted population revealed the potential benefit of patient videos as a mechanism for providing information to aid decision-making surrounding having a laryngectomy, and gaining insight into the perceived post-treatment QOL issues. While this study demonstrated a demand for patient-focused information on treatment of laryngeal cancer, a sizeable patient population was attempting to meet this need through YouTube; with the most beneficial, reliable and detailed videos being those produced by healthcare professionals [37].

Online resources developed for healthcare professionals had more detailed and accurate information that those uniquely for a patient cohort [36, 37]. Subsequently, open-access professional web-based interventions may expose patients to alarming information or excessively complex information, with the possible result of evoking distress and adversely influencing patients’ behaviour and decision-making.

When both quality and readability of educational content from HNC web-based interventions have been examined, the consensus drawn is patients should be advised to access online sites maintained by healthcare professionals to ensure accuracy of information [36]. Nonetheless, this premise cannot be universally accepted, given evidence that online information about HPV +ve oropharyngeal cancer was found to be insufficient following quality assessment of 27 unique web pages [31], using the QUEST analysis tool [32]. The readability of these 27 websites was also poor, reflecting the challenges of writing information about complex conditions in a way that is easy for the public to understand. Misleading or confusing information on web-based interventions can compromise decision-making and jeopardise the patient-physician relationship. Creating a few trustworthy web-based resources, that meet quality criteria and are routinely reviewed, could result in the provision of a list of these vetted websites being given to patients and published on a hospital/clinic’s own web page.

This was the predominant focus for many of the studies (n = 7) [12, 33‐35, 39, 40, 43]. Healthcare professionals have suggested that self-care interventions for HNC patients should include problem-solving advice to help patients when they return home [12, 34, 40], whereas patients would argue that potential problems should be identified before treatment, so they have time to think about actions they may need to take, and questions that they may want answer [39]. Although online self-care programmes can be helpful for HNC patients [39], adherence may depend on the degree of connectivity patients feel with the team who are treating them [35] and support offered by healthcare professionals, in combination with an online resource [34]. Discussing and promoting specific online resources with patients during consultations may add value to their use as a supportive interventions for patients at home [42].

Some web-based interventions were developed to track and monitor patient’s symptoms at home, by collecting biometric parameters remotely, potentially facilitating closer partnership with clinicians for monitoring care, promoting engagement and shared decision-making [43]. Monitoring physical and physiological parameters remotely and in real time, including pulse, blood pressure and weight, plus patient-reported outcomes may offer cost-effective strategies to optimise cancer care outside of the clinic setting. Such interventions may also support patients by offering reassurance that their healthcare professionals are being provided with objective data during active treatment and alerted to any potential health-related issues, such as the aforementioned, which demonstrated early detection of dehydration during radiotherapy [43]. Ease of access to remote monitoring may also encourage patient adherence to treatment, with reporting of new symptoms or side effects more readily, thus improving real-time clinical decision-making.

In most of the studies where web-based self-management interventions were tested, patients valued the knowledge gained, enhanced control and perceived self-efficacy from using the intervention [35, 39, 43].

Within web-based interventions, use of former HNC patients to describe their long-term lived experience is a method used by some researchers to provide a realistic and patient-centred perspective. This provides an opportunity to model behaviours and share survivor stories of beneficial self-management interventions [12, 34, 38]. Furthermore, some researchers found that including patient experience stories within an online intervention provided other survivors with a sense of emotional and social support [33]. This was particularly true for HNC patients who had less social interaction because of increased self-consciousness related to their altered appearance [33]. Even those who are regarded as longer-term survivors indicated an interest in learning self-care strategies from others [12]. Overall there was a clear acknowledgement, derived from patient feedback, that more patient stories/videos were advocated to enhance usefulness of web-based interventions for HNC patients [12, 38]. Nonetheless, HNC survivors recognised the need for caution when accessing patient narratives, reflecting the uniqueness of an individual’s journey.

From the 13 included studies, the barriers and enablers identified when designing and using web-based interventions for HNC patients are noted in Table 6. To promote acceptability and usability of web-based interventions, most authors advocate the need for extensive stakeholder engagement, in an iterative process, to minimally include HNC patients and clinicians [39, 43]. Involving patients and clinicians throughout all aspects of web-based intervention development and the testing process can enhance the acceptability and effectiveness of web-based interventions [39]. Furthermore, consideration should be given to the quality (reliability and accuracy) and readability of the information when designing online material [31].

Some studies evidenced patients’ desire for web-based interventions to be interactive so that patients/carers could actively engage with healthcare professionals in real time or submit questions [12]. This would require sites to be monitored by staff, which is likely to be appropriate if the premise of the intervention is for symptom tracking and monitoring, as a mechanism for directing care delivery. However, for other aspects of survivorship care, self-management applications where patients can use them independent of healthcare professionals may facilitate sustainability of long-term survivorship care [40]. Furthermore, if HNC web-based interventions can be tailored to reflect individuals’ needs, this is likely to enhance health-related QOL [37, 38, 40, 42].

There was a combination of tumour-specific (HNC) and general cancer websites identified, which encompassed patient stories at key points of the cancer continuum, such as at diagnosis, during treatment and living with and beyond cancer [www.​macmillan.​org.​uk; www.​ahns.​info; www.​headandneckcance​r.​org.​au]. Some websites had navigational tiles, clearly indicating the location of patient stories within the website, which generally made access much easier [www.​hancuk.​org; www.​headandneck.​org]. Others provided enhanced navigation by adding a short summary descriptor of video content (tumour subtype and aspect of cancer journey) [www.​merckgroup.​com], making it easy for viewers to select videos likely to best meet their needs. Within some of the generalist cancer websites, indexing of tumour type was not provided [www.​cancercare.​org], which could lead to difficulties for HNC patients to find the most relevant and meaningful stories for them.

Websites varied on mode for displaying patient stories, from text form [www.​hancuk.​org; www.​christie.​nhs.​uk] to videos [www.​cancercare.​org; www.​headandneck.​org; www.​merckgroup.​com] or webinars [www.​headandneck.​org]. Some websites include blogs [www.​macmillan.​org.​uk], enabling people to enter journal excerpts about their experiences, and podcasts [www.​cancerresearchuk​] for patients to speak about specific aspects of their cancer journey. As before, when there was no signposting to blogs and podcasts for specific cancer types, viewers were required to trawl through all the available content, making navigation potentially cumbersome.

Most of the Australian sites featured in this review [www.​cancercouncil.​com.​au; www.​cancervic.​org.​au; www.​cancer.​org.​au] used the Australian Cancer Council branding which lends a certain familiarity, authenticity and credibility for viewers around cancer information. One website had a facility for interactive patient engagement [www.​cancer.​org.​au], with a tab entitled iheard which explores the myths around cancer and allows viewers to submit questions about things they may have heard or been told. Other innovative additions to the patient stories within websites were provision of a side bar for each story which included disease-specific information, the doctors involved in the patient’s care and what type of treatment the patient had [www.​foxchase.​org]. This was provided by an American healthcare organisation website, thus inclusion of the doctors’ details facilitated individuals’ visibility, which could potentially promote onward patient referral, within a private healthcare setting. Furthermore, one site included a Survivor Support tab which can put newly diagnosed patients in touch with cancer survivors to provide one-to-one support [www.​cancer.​ie].

Written patient information is available on most of the sites with the exception of www.​enthealth.​org. Some websites include information on prevention of HNC [www.​cdc.​gov], treatment options [www.​macmillan.​org.​uk; www.​ahns.​info; www.​headandneckcance​r.​org.​au], emotional support [www.​cancer.​gov; www.​cancer.​net; www.​bccancer.​bc.​ca; www.​mylifehouse.​org.​au], symptom management such as pain [www.​bccancer.​bc.​ca], and spiritual care [www.​bccancer.​bc.​ca], prognosis [www.​wikipedia.​org; www.​cancerresearchuk​] and links to other patient information resources rather than providing them directly [www.​cdc.​gov; www.​wikipedia.​org; www.​wkidoc.​org]. Many of the sites include information about current research [www.​macmillan.​org.​uk; www.​cancerresearchuk​; www.​cancer.​gov], which could be regarded as an incentive for viewers to make a donation to the site.

Of note, there were websites identified that focused on clinical guidance and treatment pathways designed for healthcare professionals [www.​nice.​org.​uk], but can be accessed by the public. Such sites may help patients to see what is considered best practice, but patients may not be aware that not all guidance will be adopted in every health authority, which has the potential to cause confusion and anxiety. Other websites were clearly aimed for professionals but one such site also included a tab entitled Patient Area which provided a series of external links for further advice and support [www.​bahno.​org.​uk]. One of the links included was to a cookbook specifically for HNC patients, which describes the challenges and tip for eating and swallowing after surgery and a series of recipes from HNC survivors.

Some websites pertained to specific healthcare organisations [www.​ouh.​nhs.​uk; www.​christie.​nhs.​uk; www.​royalmarsden], which more often listed HNC as one of many cancer types. These websites aligned to healthcare organisations varied immensely on the amount and quality of patient information on HNC, directly reflected by QUEST scorings (see supplementary information). On addition to the information in text form, one of the websites [www.​royalmarsden] provides a tab titled Patient Information Library, with a recite button enabling an audio guide, which increases accessibility for those with impaired vision or illiterate. In contrast, some of the titles of the navigational tiles are quite complex, requiring patients to know the clinical name of tests, treatments, etc. in order to access the correct information.

Information about the healthcare teams often appears on the organisational websites, with some being simply a list of the team members [www.​ouh.​nhs.​uk; www.​moffitt.​org], while others include staff pictures and key contact details [www.​christie.​nhs.​uk; www.​mylifehouse.​org.​au]. Websites include videos from members of the HNC team, often relate to professionals advising on treatment modalities specific to their professional discipline, such as a radiographer detailing radiotherapy [www.​ouh.​nhs.​uk], surgeons talking about what to expect following an operation [www.​mylifehouse.​org.​au] and a radiologist outlining diagnostic tests [www.​radiologyinfo.​org]. This latter site provides specific information using text, videos and images which could be considered a particularly helpful way of illustrating to patients what some of the diagnostic equipment looks like.

There is an evident gap in both the literature and availability of high-quality patient-focused online resources for use in clinical practice to aid decision-making for HNC patients. Studies within the scoping review acknowledged that patient narratives would be particularly helpful in web-based interventions for this complex tumour group but are often absent [12, 38]. When available and accessible on online platforms such as YouTube™, this information proved helpful but limited to a subsection of HNC patients (those with a laryngectomy) [37], therefore not addressing the wider needs of this patient population. Given the specific, often long-term impact of various HNC treatment options [38], this necessitates the need for web-based resources that provides information across the spectrum of treatment options with patient narratives embedded, which could be used to foster a shared decision-making approach [16, 47]. Multimedia approaches should be integrated for the sharing of patient lived experience, as studies demonstrate that patients do respond positively to such approaches [48], and could consequently augment face to face consultations by providing realistic patient-focused perspectives.

Cognisance should be given when developing web-based interventions on open-access platforms, as by definition they allow patients to find and engage with material freely, especially if the resource is not primarily intended for patients but healthcare professionals. Digital interventions for healthcare professionals entail predominately explicit facts and opinions, correlated with healthcare delivery systems and biomedical research, which can have a prescriptive focus [49]. Whereas patient-focused online resources, developed with embedded patient narratives, offer other patients substantial expertise on strategies for coping with issues relating to everyday living. These are often gained through trial and error of the lived experience, which can have added value as it is more easily comprehended and accessible for patients.

Promoting physical and psychological preparedness for treatment is fundamentally important, which underpins many prehabilitation programmes [50], utilising behavioural change. Although integral to successful post-treatment outcomes, often patients find lifesyle behavioural modifications challenging [51]. Using web-based interventions can be helpful in motivating patients to make behavioural changes necessary to optimise treatment outcome [52, 53] but are unlikely to succeed if they are not accompanied by support or endorsement from their healthcare professionals [49, 54].

Self-management tools employed in HNC services [12, 35, 39] and more broadly in chronic illnesses [55] provide patients with coping mechanisms to facilitate autonomy, through voluntary actions. These can promote self-efficacy through building their personal skill base and facilitate relatedness through access to peer and other support services [12]. Other authors found that self-management tools improved self-knowledge and skills for HNC patients with tumour-specific concerns, but identified an issue surrounding the optimal timing of such interventions [40]. In the wider literature relating to chronic illness, partnership between patient-clinical teams was also identified as a key facilitator in self-management intervention success, but was also often the greatest barrier to success by its absence [56]. Therefore, to successfully promote the utility of online self-management programmes, these should be promoted by the clinical teams and discussed during subsequent follow-up appointments.

Designing online interventions for patients presents a number of barriers and enablers relating to efficacy, credibility and quality (Table 6). Increasingly, it is recognised that developing online interventions should have a theoretical underpinning, for example, Theory of Self-Regulation [34] or Social Cognitive Theory [35], and intervention development guided by frameworks such as the Person-Based Approach [57] or experience-based co-design [38]. Despite having a theoretical basis, some online interventions were reported as less effective than hoped [40]. This does not mean there is no evidence of efficacy, but developers should undertake feasibility testing or process evaluation to ascertain what works, for whom and in what context. Such findings are integral, providing an opportunity for web-based intervention refinement before formal evaluation and widespread implementation.

Patient and healthcare professional engagement in intervention development should be regarded as essential and a key enabler toward making an online resource maximally effective, credible and ensuring that it has clinical utility. Employing intervention development frameworks such as the Person-Based Approach [56] or experience-based co-design [38] ensures key stakeholders and end-users are active participants at all stages of the online intervention development. While there was evidence of stakeholder engagement throughout all steps of intervention planning and optimisation in some studies within this scoping review [12, 35, 39], others limited participant engagement to testing the interventions [34, 40, 43]. This limited engagement was also evident in the broader cancer literature [16, 52, 58]. Although online interventions for HNC patients should be co-designed using multiple stakeholders, this has inherent challenges surrounding project management, budgeting and time investment. This is not unique to this patient population, nor to cancer care, but evident in the broader health literature [59, 60]. It would also appear that engaging patients and healthcare professionals in intervention development may depend more on the epistemological and ontological beliefs of the researchers, despite growing recognition of the importance of engaging the public in research [61, 62].

It is well documented that there is a preponderance of HNC patients that preside from lower socioeconomic classes, with poorer health literacy. Health literacy is predicated on patients’ ability and motivation to access, understand and use information to promote and maintain health [63]. Further barriers to health literacy can be evidenced with poor quality information or poorly presented content, adding to patients’ stress and anxiety [63]. Furthermore, low health literacy is negatively correlated with the ability to discriminate between high- and low-quality eHealth information [64]. One of the criticisms of health-related websites is the poor quality of the information provided [65]. Compounding this issue, is the growing number of cancer patients who use online information to guide healthcare decisions, either for themselves or on behalf of another person. This has consequently led to the development of validated tools to evaluate and appraise online health information. Through the development of quality assessment tools such as HoN and QUEST, and tools for calculating ease of reading [31, 36], online health information can be assessed objectively for quality. We would recommend that patients should be directed to websites which have proven efficacious based on quality assessment tools, mitigating exposure to poorer quality and misinformation from other web-based resources [36]. Directing patients towards appropriate sites during consultations or navigating sites with them (which may result in increased time pressures) can provide additional reassurance and may improve the patient-professional relationship [66].

The development of high-quality, evidence-based and theory-driven online resources has implications for practice, aiding shared decision-making, preparedness for surgery, remote monitoring of symptoms and self-management. Policy makers should focus on improving guidance for development and quality assessment of such sites. Additionally, the quality assessment of public-facing websites providing health information needs to be more readily available. Finally, there are several implications for future research. Research on web-based interventions for patients should demonstrate co-production with patients and other key stakeholders to improve acceptability and usability. Web-based intervention development should have a theoretical underpinning to enhance the quality and effectiveness of such resources in clinical practice.

This scoping review focused specifically on web-based interventions for patients, thus excluding studies solely described for caregivers, which could also prove helpful to patients. Limiting studies to English text and focusing on those published between 2010 and 2020 may have excluded some valuable papers. However, setting such parameters enabled the capture of the most current studies in a rapidly evolving era of web-based intervention development.

In trying to mimic patient behaviour, we chose to review the first 100 unique websites which appeared when ‘head and neck cancer’ was entered into one search engine. As a result, some valuable websites may have been missed. Finally, this scoping review sought to understand the nature of online resources currently available and how patients interacted with them; therefore, a readability assessment was not performed, as it was not crucial component to this type of review.