Acceptability of online exercise-based interventions after breast cancer surgery: systematic review and narrative synthesis

Despite increasing incidence, cancer survival rates have doubled in the past 40 years [1]. More than 40% of people undergo surgical interventions as part of their primary cancer treatment [2] and while many people are able to return to pre-diagnosis occupations and lifestyle [3‐5], treatment-associated side effects are a common occurrence [6]. This includes functional and musculoskeletal issues such as loss of muscular and cardiac fitness, fatigue, impaired motor sensory function and lymphoedema [6]. Cancer multidisciplinary rehabilitation is found by the literature [7‐9] to minimize these effects in its capacity as a key element of the care that cancer patients receive, aiming to minimize long-term complications, reducing hospital re-admissions and improving quality of life [7‐9]. Cancer rehabilitation assists individuals to achieve the best possible physical, psychological, social and vocational outcomes [10]. A multidisciplinary team approach which anticipates the needs of cancer survivors in a timely, coordinated and continuous manner from the time of diagnosis is recommended [10]. Worldwide policy drivers for patient empowerment during cancer treatments emphasize the need for self-management and person-centred interventions to address unmet care needs [11]. Studies suggest that approximately 40% of patients report at least one unmet need for rehabilitation services in the immediate recovery period and in the longer term [12‐14]. A large-scale cross-sectional survey also showed that 63% of cancer survivors had a need for at least one type of rehabilitative service, with physiotherapy and physical training being the most often required (43% and 34%, respectively) [15].The Internet is a powerful medium for providing accessible and low-cost resources to address unmet support needs in cancer survivorship. Although increasing, the number of these resources is relatively small and there is minimal evidence that describes users’ experience of accessing them [16, 17]. Engagement with interventions, facilitators and barriers to their use and users’ views on their acceptability, therefore, needs further examination [16‐18]. Yardley and colleagues [18] suggest there is a clear distinction between effective engagement with an online intervention which leads to desired outcomes and behavioural change, and a minimal level of engagement, which might not necessarily effect change. Further evidence suggests a number of factors are associated with poor user engagement. This includes the provision of standard information instead of more specialist support and personalization of information [19, 20]. Engagement can, however, be limited by barriers such as lack of experience with using online resources and by usability issues [21, 22]. To inform future research in this area, the aim of this review was to comprehensively examine adherence, acceptability and satisfaction with exercise-based online self-management programmes for post-surgical cancer rehabilitation and to identify common components of such interventions.

A total of 696 records were identified and 41 underwent full-text review. Eleven studies published between 2013 and 2018 and with a total sample size (n = 965) met the study inclusion criteria and were included in the synthesis. Five studies were conducted in the Netherlands, three in the United Kingdom, two in South Korea and one in the United States. There were three randomized controlled trials (RCTs) which were presented in five different studies [36‐40] (with predominantly quantitative study designs [36, 37, 39, 40] and one mixed-methods RCT and process evaluation study [38]), three feasibility studies, all with quantitative study designs [41‐43], one qualitative early user testing study [44] and two evaluation studies [45, 46] that had qualitative [45] and mixed-methods [46] study designs. The studies with quantitative designs that constituted the majority of all studies in this review (n = 7) used single-group feasibility design [43], an RCT [36, 37, 39], a pilot RCT [40], a pre- and post-test feasibility study [41] and a randomized parallel-group feasibility study [42]. The two studies with the entirely qualitative designs and qualitative findings [44, 45] were conducted using focus groups [44] and in-depth interviews [45] for the purposes of conducting qualitative testing [44] and an evaluation [45] of their interventions. The two studies that adopted mixed quantitative and qualitative methodologies [38, 46] conducted process [38] and formative [46] evaluations and, hence, provided both types of data, with prevailing quantitative data in them.

The most commonly used tools for quantitative data collection across the studies were study-specific surveys or questionnaires, validated outcome-specific tools which occasionally were adapted and/or translated into the participants’ language, semi-structured telephone interviews, data usage, standard questionnaires and self-reported questionnaires. The collection of qualitative data was mainly performed using telephone interviews, open-ended questions and an evaluation survey. Lee et al. [46] in their study used qualitative semi-structured interviews to obtain their qualitative data during the intervention development and questionnaires with 7-point scales in order to obtain quantitative data for process evaluation.

The aim of this review was to evaluate the current literature and explore adherence, acceptance and satisfaction with Internet self-management interventions for cancer rehabilitation after surgery and whether intervention features or other factors affected these outcomes. The studies reported in this review were classified as having “good” to “strong” methodological quality. Evidence was provided that participants were more inclined to be satisfied with, to accept and adhere to the interventions if the following criteria were present: the intervention was time and cost-efficient, required the acquisition of minimal or no new skills, was presented with coherent language, was offered as soon as possible after cancer treatments and contained the essential precautionary and educational information relevant to and tailored for the individual user. These findings are supported by another systematic review of web-based interventions for symptom management in cancer patients by Fridriksdottir et al. [47]. These authors reported that web-based interventions can have a positive effect on cancer symptoms management provided that the interventions are timely and include evidence-based information, tailored feedback and self-management components.

There was a wide range of adherence to interventions that varied across the studies. Analysis showed that adherence was significantly better where contents had been personally chosen by the users [42], interventions with personalized information [40, 43, 45] and interventions with tailored information [41, 44]. A similar wide range of adherence to healthcare web-based interventions, directly correlated to the intervention duration, was also noted by Kelders et al. [26] in their systematic review. Results showed that all interventions with adherence above 80% lasted between 6 and 21 weeks, and with average adherence levels to these interventions of 55%, whereas interventions with durations ranging between 52 to 130 weeks had an average adherence level of 39%.

Kelders et al. [26] also correlate web-based intervention adherence to its “intended usage”, i.e. to the recommended by the intervention creators “extent” of usage for gaining maximum benefits from the treatment intervention. However, only a few studies mention intention to use the intervention in some form. Lee et al. [40] mention “intended usage” in their study and the fact that they have provided the information about the intended usage of the intervention to their study participants in the form of a manual containing recommended optimal for the user dietary or exercise parameters. Kanera et al. [36] mention the “intended action” as a feature in their action planning component, referring to a specified action to be done by the participants, in order to perform a given behaviour change. Melissant et al. [41] have predefined the feasibility of their intervention as 50% or more adoption and usage “as intended, based on login data”, however, not providing a clear description of what the intended usage as per login data was. Another study in this review provided recommended cut-off rates of usage based on physical activity and dietary guidelines in the field of the intervention [42]. As per the definition provided by Kilders et al. [26], one could argue that the intended usage of an intervention can match the predefined cut-off usage levels by most of the authors that measured adherence in this review and predefined these. However, some of the studies did not provide an accurate description of the predefined intended cut-off usage levels or a rationale for the predefined usage levels [37], and whether or not these predefined usage levels were expected to bring more benefits to the user compared with less usage of the intervention [36, 39]. Some studies did not specify any predefined cut-off usage levels at all [44, 46]. The last two comments imply a potential knowledge gap showing the need for intervention designers to explicitly describe the intended usage of an intervention rationalizing the benefits that the intended levels of usage would bring to the intervention user.

Education level was reported to be a moderating factor for intervention adherence with significant correlation between the two described by Cnossen et al. [43] and with non-significant correlation between education level and adherence reported by Kanera et al. [36]. When considering the results of the two studies, it should be noted that the sample size in the RCT by Kanera et al. [36] was nearly ten times larger than the sample by Cnossen et al. [43]. Moreover, only Kanera et al. [36] analysed their data based on the intention-to-treat (ITT) principle which generally provides a less biased estimation of treatment effectiveness [48] and thus makes the results of this study more reliable than others [48]. Also related to the reliable reporting of study samples, failing to report the recruitment process and the gender of their participants, as did the authors in Lee et al. [46], is a major flaw in this article. Poor recruitment reporting can also inflict significant risk of bias and thus reduce the quality of a study [49].

Three interventions described by Cnossen et al. [43]; Kanera et al. [36, 39]/Willems et al. [37] and by Paxton et al. [42] were based on a theoretical rationale, and no public or patient involvement in the designing of these interventions was described which suggests that these authors may have omitted the inclusion of features or components that the intervention users would have liked or preferred. For instance, based on their users’ qualitative feedback, Harder et al. [44] added a “Frequently Asked Questions” option, a symptoms diary and tailored information sections, and they paraphrased some of the wording so that the intervention better reflected the users’ preferences. As the authors noted, this could have improved the user testing feedback and adherence to their intervention.

In terms of satisfaction, two studies had an opposing NPS: a positive NPS by Cnossen et al. [43] by head-and-neck (HAN) cancer survivors, versus a negative NPS by Melissant et al. [41] by their BC survivors. Since satisfaction levels have been correlated with adherence levels, exploring satisfaction can provide useful insight to researchers in terms of improving patients’ adherence to Internet-based interventions [28].

No studies reported any negative feedback related to acceptability of Internet interventions. A study by Short et al. [50] specifically looked into different delivery schedules of their intervention. Although this study was not included in this review due to unclear surgical status of their participants, it interestingly showed that an Internet intervention delivered monthly over 3 months was more acceptable for the participants compared with weekly delivered modules or as a one-off interventional episode. Moreover, Ryhanen et al. [51], in their systematic review of educational Internet or interactive computer-based interventions, aiming to increase the patients’ information and awareness of breast cancer and its symptoms, also synthesized some results showing that spending more time using the interactive interventions increased the information competence of the intervention users, compared with spending less interaction time. However, the authors of this review pointed out that the majority of the interventions included were delivered as a one-off session, instead of an intervention on a continuous basis. This therefore imposes questioning regarding the positive finding about spending more time with the interventions, implying that this finding was not a common observation, but rather a one-off finding from one of the studies included in that review. There is therefore a need for more research in the field of mode of delivery of the interventions in terms of duration and frequency of interaction with such web-based health-related interventions.

In terms of the outcomes describing suggestions for improvements, four out of seven interventions—the RESTORE intervention [38, 45], the bWell intervention [44], the Oncokompas intervention [41] and the WSEDI intervention by Lee and colleagues [40, 46]—involved people with cancer during their design and development stages, as recommended by the clinical guidelines for healthcare decision-making by Nilsen et al. [52] and other authors in the field of Internet health intervention design [18, 53, 54]. However, within this review, no correlation between the cancer patients’ involvement in the intervention designing and improved outcomes for intervention use was found.

Based on studies with good to strong methodological quality, this review provides evidence suggesting that Internet self-management interventions for postoperative cancer rehabilitation can be satisfactory, acceptable and usable, as long as:

Due to the scarcity of RCTs, the findings from this review should be treated with caution. Despite no limitations on publication year being set, the short publication span of 5 years indicates the lack of accumulated empirical evidence regarding these novel interventions. This implies the need for future more rigorous, large-scaled clinical trials to be conducted in this area.