Reflexivity

We approach this work from various perspectives: SS and CS are anaesthetists working in the NHS and this work means that they regularly encounter patients who are undergoing cancer treatment, though prehabilitation is not part of their regular clinical practice. CS is also a researcher with an interest in health inequalities, and has relevant lived experience as a carer for relatives undergoing cancer treatment. HS is a sociologist researching cancer care, inequalities and communication, with lived experience of cancer. We drew on our professional backgrounds and experiences in developing the study and analysing the data, but also attempted to avoid undue influence by maintaining an awareness of their potential impacts, and by discussing the study as a team as data were acquired and analysed.

Ethical considerations

Formal ethical approval was not required for research involving publicly available information. However, this work was conducted in line with the Lancaster University research ethics policy and with reference to guidance from the Association of Internet Researchers [21]. It is impossible to fully anonymise quotes from freely available online material however, we have chosen to draw focus to the content rather than the institutions by using pseudonyms throughout. This work has been reported in accordance with the Standards for Reporting Qualitative Research [22].

Data collection

A systematic grey literature searching strategy was adapted after consultation with a university librarian to locate relevant online patient information resources [23]. The three groups of resources searched were a database (TRIP Pro, Trip Database Ltd, Newport, UK), search engines (Google, Google LLC, Mountainview, CA, USA and Bing, Microsoft Corp, Redmond, WA, USA) and websites identified by the research team as likely to contain relevant material. Specificity was improved by using search engines customised to website domains relevant to UK prehabilitation organisations and restricting results to the UK only. Discourse analysis is the study of language in its social and cultural context. We chose to conduct this study within a common language (e.g., UK English) and a ‘national’ service (e.g., the National Health Service) to ensure socio-cultural and linguistic consistency. The websites of cancer charities registered by the UK Government Charity Commission [24], trusted patient information websites listed by NHS England [25], and the websites of NHS trusts known to provide a prehabilitation service were searched [26]. Searches were conducted between 3/7/24 and 9/7/24. All search strategies involved three groups of terms: 1) prehabilitation, 2) cancer and 3) patient information. Searches were built with synonyms using non-technical language as the aim was to retrieve patient-facing resources. Detailed search strategies are provided in Appendix S1.[Subxref1]

Complete screening of the innumerable web pages returned by a search engine is an unmanageable task. Consistent with previous grey literature search reports, we agreed in advance to screen the first 100 results per search [23]. The position of a website within a search relies on the relevancy ranking algorithm within the search engine to highlight the most accessed results. This was beneficial for this project as the results most accessible to the researcher were also likely to be those most accessed by patients. A single investigator (SS) screened the search results, at the time of searching based on the website title and ‘snippet’ text beneath, against pre-specified inclusion criteria (Table 1). The full webpages were screened again for inclusion in the final analysis. The final list of included resources was agreed by all reviewers.

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Table 1. Inclusion and exclusion criteria.

https://doi.org/10.1371/journal.pone.0339169.t001

Individual webpages were grouped into cases where appropriate. A case represented a single organisation and all the relevant information produced by them and made available on their website. Cases were then categorised by organisation type that produced the material. Geographical and professional relationships between organisations were recorded.

Quality appraisal

The Quality Evaluation Scoring Tool (QUEST) was used to assess the quality of the included sources [27]. The tool assesses online health information across six domains (authorship, attribution, conflict of interest, currency, complementarity and tone) to determine the overall quality of a resource on a 28-point scale where a higher score indicates a higher-quality resource. It aims to appraise information quality from an expert perspective as opposed to assessing user experience or understandability for patients. Scores for the included resources were calculated by a single researcher (SS) and recorded in a spreadsheet (Excel, Microsoft Corp, Redmond, WA, USA).

Sampling

A purposive maximum variation sampling strategy was developed iteratively based on organisation characteristics and quality appraisal scores. The final sample satisfied the following criteria:

• Contained information from at least one of every organisation type and (where possible) in approximately the same proportions as the full data set.
• Contained information from every nation of the UK.
• Contained approximately even numbers of sources from each quartile according to the quality appraisal score.
• Organisations that were associated professionally or geographically were not represented more than once.

The concept of information power was used to estimate the approximate sample size that would be required for analysis at the time of study design [28]. Information power was considered throughout the study to determine when to conclude the analysis phase. Initially, sample size was considered in relation to a published study using similar methodology [29]. We determined our study to have a narrower aim and a more specific sample than this prior work, and therefore initially anticipated fewer resources would be required for our analysis. The initial search results confirmed the specificity of the sample, with resources typically being produced by similar organisation types (NHS Trusts or charities) who often shared the same content. The analysis further supported the use of a smaller sample as many resources contained similar themes which we were able to link to existing theory about behaviour change techniques and patient information discourses.

Individual webpages from sample cases that explained prehabilitation or a service were extracted into qualitative data analysis software (NVivo, Lumivero LLC, Burlington MA, USA) for analysis.

Exports were quality checked against the original site to ensure content was not distorted, altered or updated. The transcripts for multimedia content were extracted directly from webpages (if available) or created using dictation software (Word, Microsoft Corp, Redmond, WA, USA). All transcripts were checked for quality against the original content for analysis. Duplicate content (often videos) shared between organisations was only analysed once.

Data analysis

Analysis followed the procedural stages outlined by Rapley [19]. Text was read sceptically from a perspective which foregrounds the constructive and functional properties of language, prompted by a series of questions outlined by Rapley and Willig [18,19]. A single researcher (SS) coded text inductively, working through the documents line by line. Codes were collated into a codebook which was refined iteratively using a constant comparison method. Data were analysed for similarities or variation in the language used to present concepts. Theories were formed and refined with reference to the data set, academic literature and discussion between the research team members.

Analysis: Influence vs Inform

Almost all of the online patient information stated the benefits of prehabilitation. Many different benefits were described in individual resources and across the sample (Box 1). In contrast, the limitations or drawbacks of prehabilitation were rarely discussed. At most, a small number of organisations acknowledged contexts in which the benefits of prehabilitation were uncertain (Box 2). The benefits were mostly presented with certainty or emphasis (Box 3). Although some organisations adopted a more cautious tone with references to chance, risk or likelihood (Box 4), this nuance was lost when more certain language was used in other parts of the same sentence. For example, in the phrase “you’re less likely to suffer from complications”, “you’re” [a contraction of ‘you are’] indicates certainty but “less likely” acknowledges chance. The overall effect could reasonably be interpreted as a direct and certain relationship existing between intervention (prehabilitation) and outcome (complications). The benefits of prehabilitation were emphasised further by some organisations who included endorsements from patients, healthcare professionals and others in their online information (Box 5). Non-specific promotional statements were used by a few organisations (Box 6). However, many organisations used phrases such as “evidence suggests” or “research says” which adds legitimacy to the benefits stated (Box 7). These phrases provide authority whilst simultaneously reassuring the reader that the benefits of prehabilitation were tangible. The benefits are validated externally, rather than being solely based on the individual, albeit expert, opinion of the authors. The benefits were further evidenced by the inclusion of patients’ and healthcare professionals’ experiences (Box 8). These techniques serve to strengthen the legitimacy of the information provided. The benefits are not only stated but can be demonstrated by research and/or experiences.

Two organisations presented the benefits of prehabilitation differently in their online information. NHS Trust 23 was unique in not listing any benefits, and NHS Trust 44 provided numerical data from their own service to illustrate its impacts. Whilst this organisation may have selected data to support their intervention, they also presented it alongside a limitation (“these improvements are likely to be multifactorial”). This suggests that the organisation may support the reader to form their own conclusions about whether the intervention was worthwhile or not. This contrasts with the other organisations in the sample which appear to assume that the benefits must be emphasised, evidenced and endorsed for patients to choose to participate.

Organisations recognised the anxiety and fear associated with cancer diagnosis and treatment in their online information (Box 9). Patients may be motivated to participate in prehabilitation because they are told that it can help them to manage some of the negative emotions they may be experiencing. For example, some organisations described how at the time of cancer diagnosis, patients may feel out of control (Box 10). A common benefit listed by several organisations was the sense of control that prehabilitation provides (Box 10). Online information also stated that prehabilitation could directly improve some mood symptoms (Box 11). Prehabilitation services commonly offered to provide support. The “support” offered could broadly be divided into emotional or interventional support. Emotional support often addressed themes of isolation by offering friendship or contact with others (including professionals) (Box 12). Prehabilitation is again positioned as an intervention to manage distressing feelings (such as loneliness) which may provide motivation for patients to access a service.

The negative emotions associated with cancer diagnosis may have the potential to motivate engagement in prehabilitation in another way. For example, fear of morbidity or mortality may motivate patients to adhere to an intervention which promises to reduce the likelihood of these consequences. Some information provided to patients appeared to capitalise on and amplify this fear to encourage the uptake of prehabilitation interventions.

Organisations suggested that prehabilitation may improve recovery or reduce complications; side-effects; or length-of-stay in hospital. These aspects of cancer treatment may be particularly worrying for patients [30]. Moreover, the information often referred to the ability of prehabilitation to help patients cope with, withstand or tolerate cancer treatments. Patients were reminded throughout the information that cancer treatments were challenging, stressful and daunting (Box 13), which has the potential to amplify patients’ fear about impending interventions. Authors could have chosen to present cancer treatment in non-emotive or even reassuring ways, and their decision to do otherwise suggests that amplified fear may serve a purpose.

Several organisations compared prehabilitation to training for a marathon (Box 14). Whilst this commonly-used analogy is perhaps intended to illustrate the need for preparation, it also positions cancer treatment as being exceptionally physically demanding, and in the context of concerns about their physical health or fitness, patients may find the idea of running a marathon to be particularly daunting. Furthermore, organisations acknowledge the short timeframe that patients may have between diagnosis and treatment. Considering that preparing for a marathon typically takes many months, the idea of having to prepare for this in a few weeks may exacerbate the sense of stress and urgency. Overall, we question the usefulness of the ‘marathon’ analogy. Unlike running an actual marathon, patients will not have made a positive choice to undergo cancer treatment, are unlikely to feel that they have the option to decide not to proceed or choose an easier alternative, and are unlikely to have the opportunity to delay interventions to enable them to prepare fully.

Organisations suggest prehabilitation can improve the outcomes, results or success of treatment, with some saying it can reduce the risk of cancer recurrence or future cancers developing (Box 15). Some organisations also state that prehabilitation may increase options for treatment. Other phrases such as “do better”, “improved outcomes” or “treatment results” are vaguer. Yet when used in contexts where health literacy is unequal, these phrases may similarly be interpreted to mean successful cancer treatment (cure or remission) as opposed other consequences such as fewer complications. Similarly, phrases which allude to the future imply that prehabilitation will also help patients to live well beyond cancer or improve their long-term health (Box 16). Whilst there may be an association between lower cancer incidence in populations with higher levels of physical activity, to suggest that prehabilitation reduces cancer recurrence is an overstatement of the current evidence base [31]. Arguably, treatment failure and survival are some of the most emotionally challenging concepts that patients may be confronted with, and therefore an individual’s motivation to engage with any interventions that promise to influence these outcomes may be strengthened by possibility of reducing this risk.

The online information promoted the benefits of prehabilitation whilst rarely discussing the limitations or alternatives. Emotion was used to strengthen the value of the benefits described. Overall, the resources worked to convince patients of the advantages of prehabilitation as opposed to empowering them to make an informed choice about why they should participate.

Analysis: Motivation vs Resources

The information provided by prehabilitation organisations more often focused on influencing individual motivation as opposed to recognising wider determinants that may affect participation in a service. The information focused on addressing perceived psychological barriers whereas practical barriers were rarely discussed. Organisations referred to the personalisation of interventions. However, this mostly referred to matching interventions to the physical needs of a patient as opposed to their social circumstances. Lastly, the information worked to emphasise the individuals’ responsibility for performing the interventions. These themes align to contribute to the idea that individual motivation is the main determinant of participation in prehabilitation and as such the information focuses on influencing this.

Potential concerns that patients could have about participating in prehabilitation were addressed in the online information. Predominantly it focused on psychological as opposed to practical barriers to participation. The online information provided reassurance to patients about the knowledge, fitness levels or time investment required to experience the benefits of prehabilitation (Box 17). Academic literature recognises the short timeframe between cancer diagnosis and treatment, during which there are multiple competing demands on a patient’s time, as a specific barrier to participation in prehabilitation [6,7]. Some organisations may have sought to include and encourage patients to participate during this window by addressing these concerns in their online information.

However, the way in which some organisations addressed these concerns suggests that they perceive these barriers to be more related to individual motivation than an understanding about their interventions. Some organisations go beyond providing information to reassure and instead attempt to use language to motivate. The efficacy of prehabilitation for patients who had limited time to complete interventions was sometimes addressed using the phrase “as little as” (Box 18). the function of this phrase is to emphasise – to go beyond informing patients that prehabilitation in a short timeframe was beneficial.

In another phrase that occurred frequently “small changes” was positioned next to “big difference” (Box 19). this ‘value proposition’ acts to minimise the potential commitment whilst maximising the potential benefits of prehabilitation. The simplicity of prehabilitation was also emphasised in phrases such as “every little helps” (Box 20). these phrases all appear to go beyond informing patients about the time or actions required to experience the benefits of prehabilitation. By emphasising the simplicity of prehabilitation, they provide greater assurance that it is within the readers ability to attain the benefits potentially motivating them to adhere to the intervention.

Practical barriers to participation in prehabilitation were less frequently addressed in the online patient information. The safety of exercising with cancer was sometimes assured (Box 21). The academic literature has previously identified limited finances or difficulty travelling as barriers to accessing prehabilitation [6,7]. Some services stated that their interventions were free or provided in a choice of formats or locations (Box 22). these examples demonstrate a potential awareness within some organisations of the non-motivational barriers that may prevent patient participation in prehabilitation.

The individualisation of prehabilitation interventions was a frequently occurring theme in the patient-facing literature (Box 23). When organisations referred to the personalisation of interventions, this commonly meant adjustments to suit the biomedical needs of a patient (Box 23]. Fewer organisations referenced the personalisation of interventions to suit patients’ socio-economic circumstances, cultural preferences or personal choice (see Box 24 for one notable exception). The focus on tailoring interventions to a patient’s physical attributes is another way in which the information conveys the feasibility of prehabilitation. The information works to reassure patients that they will not be expected to do interventions that are beyond their physical capacity, aiming to encourage them to participate. Again, fewer organisations seem to acknowledge the need to tailor interventions to patient’s circumstances or choices.

The information emphasised the importance of the individual in prehabilitation interventions. Some organisations linked individual participation and intervention success explicitly (Box 25). More implicitly, organisations chose to address individuals directly in their information. Sentences emphasised the position of the individual as central to the intervention and as the recipient of the benefits (Box 26). Phrases such as “self-care”, “self-manage” or “take care of yourself” similarly emphasise organisations’ expectation that it is the individual’s responsibility to act. This was also implied by a phrase common to some organisations that suggested individuals “take an active role” in their care. A few organisations included comparisons to others in their information (Box 27). These statements set out the expectation that services have of patients. That expectation is one of participation or compliance.

As stated above, support was offered by many online patient information resources (Box 28). This appears to contradict the idea that prehabilitation is solely the responsibility of the individual, particularly when emotional support often addressed feelings of isolation. Support was also offered in the context of interventions although this was often phrased in a way that maintained the assumption of individual responsibility (Box 28). Support comprised information or guidance, but actions remained the responsibility of the individual.

Strengths and limitations

To our knowledge, this is the first study to systematically search or analyse the patient-facing literature about prehabilitation. As such, a strength of this study is that it characterises prehabilitation services from a different perspective to previous work. This study uses naturalistic observation of online information to understand prehabilitation services. Naturalistic observation seeks to avoid the presence of the researcher influencing how organisations or participants behave and communicate, which may subsequently be reflected in the data collected. Organisations or individuals may choose to present themselves in a certain way that is different to their usual behaviour if they know that they are being studied.

A limitation of this study is the focus on online information. Whilst many patients now use the internet to obtain healthcare information; digital literacy and access to technology are barriers known to exist in the prehabilitation context [6,7,15]. As such, there may be many patients that this information does not reach meaning that the transferability of these findings to those contexts may be limited. In addition, organisations may also provide verbal or paper-based information to their patients, which this study did not analyse. Whilst there are advantages to using naturalistic observation to understand prehabilitation services, there are also limitations due to the inability to interact with the authors of the information. The meaning and intent of content in the online information must be assumed. There is no opportunity to interrogate the authors to understand why features of the information have been included, omitted or phrased in a certain way. Additionally, we cannot interrogate the intended readers to understand how they perceive the information and what consequences this may have. Without interaction with the authors or readers, our analysis relies on our own interpretations of the resources. This will be influenced by our individual experiences and biases. To address this, we discussed our findings as a multidisciplinary group and reflected on how our positions may have influenced our conclusions.