Effects of an Internet Support System to Assist Cancer Patients in Reducing Symptom Distress

A Randomized Controlled Trial

Cornelia M. Ruland, PhD, RN; Trine Andersen, MSc, RN; Annette Jeneson, MSc; Shirley Moore, PhD, RN; Gro H. Grimsbø, MSc, RN; Elin Børøsund, MSc, RN; Misoo C. Ellison, PhD

Disclosures

Cancer Nurs. 2013;36(1):6-17. 

In This Article

Discussion

Although group differences were statistically significant only for the global symptom distress subscale (GDI) on the MSAS-SF, all trends point in the same direction: better scores in the intervention group compared with the control group. Notably, the GDI is a composite measure of the most prevalent physical and psychological symptoms experienced by cancer patients. Because patients experience their illness primarily through symptoms, reducing distress of the most prevalent symptoms is an important and promising finding. In addition, it is noteworthy that the WebChoice group, but not the control group, showed a significant within-group reduction in depression over the study period, a debilitating symptom often found in cancer patients.[22–24]

The fact that differences in outcome variables, with the exception of the GDI, did not reach significance requires caution when making conclusions about WebChoice's effectiveness. Nevertheless, the positive trends in the intervention group not found in the control group hold promise that WebChoice can be helpful to cancer patients in managing their illness. This is also supported by the analysis of patients' e-mail communications with cancer nurses reported earlier in this journal where WebChoice provided patients with space to raise questions and concerns related to symptom experiences and fear of relapse and uncertainty and provided them with answers to otherwise unmet questions.[34]

Several factors may have influenced the lack of statistically significant group differences on secondary outcome variables. The large variability in patients and time since diagnosis could have made a difference in secondary outcomes, which is an important opportunity for future research. Furthermore, our study used an intention-to-treat analysis. Twenty-three percent of the participants who were randomly assigned to the experimental group never logged onto WebChoice, and only 64% logged on more than once (our definition of a WebChoice user), a finding that is consistent with other studies on the use of Internet interventions.[7,19,48] These participants could therefore not reap any benefits from the intervention, which may have diluted the results. Although it would have been interesting to do additional subgroup analyses on only those participants who did use WebChoice actively, with the limited sample size we did not have enough power to do so. Also, although there were no significant group differences between study groups at baseline, the sample was very heterogeneous in terms of age, time since diagnosis, and type and stage of treatment, and participants came from urban as well as rural areas all over Norway where there are considerable practice variations. This variability could also have influenced study results. Although studying nursing informatics interventions under natural conditions is recommended,[49,50] real-world implementation studies typically require larger sample sizes than strictly controlled RCTs to allow monitoring and controlling for potential confounders and heterogeneity.[51] This study should therefore be repeated with a larger sample size and a more intensive data collection protocol that allows statistical control of contextual variables.

Although the finding that only about two-thirds of participants actively used WebChoice is consistent with other studies on the use of IHCAs, it raises the question about what may motivate patients whether to use interventions such as WebChoice. Very few studies so far have investigated patients' reasons for using or not using IHCAs, and previous studies on user experiences have primarily included active users only. Therefore, our team has recently conducted interviews with high users, medium users, and nonusers of WebChoice to gain more insights into patients' reasons and motivations for use or nonuse. Although the results of these interviews are not published yet, preliminary findings suggest that different patients perceived the usefulness of WebChoice quite differently. Whereas some perceived it very helpful (typically high users), others (the nonusers) expressed as one reason for nonuse that they wished to get on with their lives, not wanting to assume a "sick" role, or being reminded of having cancer when using WebChoice. This suggests that there is no "one size fits all" and that patients have different coping styles and therefore different needs for support. More research is needed to better understand how to tailor support interventions that fit patients' personality types, coping styles, and individual preferences for support.

Our analyses of whether time since diagnosis would make a difference on patient outcomes lacked sufficient statistical power and must therefore be considered purely exploratory. Yet the analyses point toward new interesting research questions: When diagnosed with cancer within 1 year, WebChoice patients showed significant within-group improvements on the MSAS total scores and all its subscales as well as on self-efficacy, but not the control group. On the other hand, when patients had been diagnosed with cancer for more than 2 years, the control group showed a significant decrease in self-efficacy not observed in the WebChoice group. This suggests that interventions such as WebChoice may work differently for patients at different stages of the disease and treatment. If we had allowed a less strict significance level of .1—that could have been justified because of the exploratory nature of these analyses—we would have found that the control group, when diagnosed for more than 2 years, significantly worsened their self-efficacy, depression, and HRQoL scores, but not the WebChoice group. The findings that there are increased benefits to survivors within 1 year of treatment call for a potentially new model of survivorship intervention for those within the first year and those beyond the 2 years of treatment.

We have not found any earlier studies that have compared the effectiveness of Internet interventions to support cancer patients at different stages of illness and treatment. Research studies designed to better understand for whom, why, under which circumstances, and how interventions such as WebChoice work could provide important insights into how to improve and specifically tailor such interventions to meet the needs of individual patients in different phases of their illness. The questions raised by our additional analyses support that this line of research is important to pursue.

Because WebChoice consists of several components, more research is also needed to determine which particular components of the application are more or less effective. For example, we do not know whether the information or communication components, such as being able to ask questions to cancer nurses, or a combination of several components is the most helpful. Interactive health communication applications such as WebChoice represent new forms of interaction and information sharing between patients and care providers by which patients can seamlessly access communication and information from wherever and whenever they need it. There is still not much known about the best ways to deliver IHCAs, the role nurses could play in their delivery, and their impact on clinician-patient relationships and communication.

More research is also needed to evaluate the effects of interventions such as WebChoice on healthcare utilization and costs. To address this important issue as well as add to knowledge on IHCA interventions, our team is currently conducting a 3-group RCT with more statistical power and control of contextual variables to test the effects of the next-generation WebChoice intervention in breast cancer patients on healthcare utilization and costs. This study also will allow us to compare the effects of different components of WebChoice.

The current study adds to the research on IHCAs and their effects on behavioral and health outcomes.[7–19] So far, however, there have been very few IHCAs to support patient-centered symptom management, and there is little evidence that they can reduce symptom distress. Only 1 previous study was found with cancer patients that investigated the effects of an Internet support system for young breast cancer patients in an RCT and found significant differences in favor of the intervention group in social support and information competence, but not on symptoms.[11] Therefore, our study adds to an understudied area of cancer research.[21]

This study has several limitations. The sample size was too small to account for the larger-than-expected variation in the data, which may explain the nonsignificant results on the majority of outcomes. We did not adjust for multiple testing in order to not lose additional power and increase the risk of type II error.

Because participants were at different illness stages, and we had no access to their medical records, we were not able to standardize the administration of outcome measures, particularly the MSAS, in relation to treatment. Some patients may have just completed an intensive chemotherapy course with significant distress of many symptoms; some may have received hormonal treatment with a different set of issues, whereas others may have completed their treatment weeks or months ago without experiencing physical symptoms. This may have contributed to some of the nonsignificant results.

Also, participants consisted of a self-selected sample, which limits generalizability. One might suspect that participants who took the initiative to enroll in a study by calling themselves may be more active and have higher levels of commitment and self-efficacy than cancer patients in general. Participants in our study had higher income and education levels than average, suggesting that they were not representative of the general population. Seeking health information on the Internet has been found to be associated with education, gender, and age.[52] Although more than 80% of households in Norway were reported to have Internet access at the time of the study, being required to have Internet access at home may have favored those with higher socioeconomic status.

The strengths of this study are its real-world setting, intention-to-treat analysis, its relevance for cancer care, and its focus on symptom distress, which is highly important to patients' well-being. This study suggests that WebChoice to some extent can meet patients' need for advice and information and thus be an important healthcare supplement. As nurses in their professional role have a special focus on illness management and self-care, nurses might be particularly qualified to help patients through Internet support with problems related to the impact of cancer on their daily life. As questions and worries often are the reason why patients schedule a doctor's appointment that may take weeks to arrive, a nurse-supported support system such as WebChoice may reduce patients' needs for office visits and the time needed for rehabilitation and recovery. As cost concerns and shortages of health professionals continue, this could become a viable healthcare supplement and means to improve care quality for many patients, which is an important area for nursing research. Thus, nurses should become actively engaged in the opportunity to provide online support to patients that can effectively help them in managing their illness.

In summary, although the study hypotheses were only partially supported, this study shows that WebChoice is a promising tool to help cancer patients better manage their illness and reduce symptom distress. Despite that the secondary outcome measures did not show significant differences between study groups with respect to depression, self-efficacy, HRQoL, and social support, the benefits of WebChoice were still quite respectable. If these findings can be further supported with additional research, WebChoice may be the type of patient-centered support system highly needed to educate, equip, and empower patients to better manage their illness and reduce needs for costly specialist care.[1,2,53]

processing....