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

Abstract and Introduction

Abstract

Background: Cancer patients experience many physical and psychosocial problems for which they need support. WebChoice is an Internet-based, interactive health communication application that allows cancer patients to monitor their symptoms and problems, provides individually tailored information and self-management support, e-communication with expert cancer nurses, and an e-forum for group discussion with other patients.

Objective: The objective of this study was to examine the effects of WebChoice on symptom distress (primary outcome), depression, self-efficacy, health-related quality of life, and social support (secondary outcomes).

Methods: In this 1-year repeated-measures randomized controlled trial, 325 breast and prostate cancer patients were randomized into 1 experimental group with access to WebChoice and 1 control group who received URLs of publicly available cancer Web sites.

Results: Group differences on symptom distress were significant only for the global symptom distress index on the Memorial Symptom Assessment Scale (slope estimate, −0.052 [95% confidence interval, −0.101 to −0.004]; t = 4.42; P = .037). There were no significant group differences on secondary outcomes. Additional analyses showed significant within-group improvements in depression in the experimental group only. In the control group, self-efficacy and health-related quality of life deteriorated significantly over time.

Conclusion: This randomized controlled trial is one of the first to evaluate effects of an interactive health communication application to support cancer patients in illness management on symptoms. Although only 1 hypothesis was partially supported, the combined results show a clear trend toward better scores in the intervention group on most outcome measures.

ClinicalTrials.gov number NCT00710658.

Introduction

Implications for Practice: If findings can be supported with additional research, WebChoice may become an important tool to support nursing care that can equip cancer patients to better manage their illness.

Healthcare reforms and policies in many countries have emphasized the need to support patients in taking a more active role in managing their illness.[1,2] Realizing that patients often play the key role in providing care for themselves and their families,[3] interactive health communication applications (IHCAs) that can educate, equip, and empower patients to better manage their illness are seen as important means to improve patient care, especially for people with chronic or long-term illnesses such as cancer. Patient-centered IHCAs have become high priority for nursing, medical informatics research, and health policy because they allow patients to access help and advice for their problems at the point of need, better understand and manage their illness and related symptoms, communicate with healthcare providers from home, become more active in their own care, and hopefully reduce the need for costly visits. Patient-centered care has been variously defined as the consideration of patients' needs, perspectives, and experiences; opportunities for patients to participate in their own care; and enhancement of patient-clinician communication and partnership.[4–6] Patient-centered IHCAs can be an important means for the redesign of health services from today's disease- or institutional-centered models to patient-centered models of care. Nurses can play a crucial role in providing patient-centered care through IHCAs because they have a special focus on supporting patients in illness management and self-care.

A number of studies have demonstrated that IHCAs can successfully support patients on a wide range of health problems,[7–10] including cancer,[11] diabetes,[12,13] asthma,[14] arthritis,[15] and heart disease[16] and to assist in health behavior change such as improving diet and weight loss[17] or smoking cessation.[18] Interactive health communication applications have been defined as computer-based, usually Web-based, packages for patients that combine health information with at least one of the components of social support, decision support, or behavior change support.[19] A Cochrane review of 24 randomized controlled trials (RCTs) that summarized the effects of different IHCAs for people with chronic diseases concluded that they have a significant effect on knowledge, perceived social support, health behaviors, clinical outcomes, and a greater likelihood than not to have a positive effect on self-efficacy.[19] Interactive health communication applications that provide individually tailored support rather than standardized recommendations are more likely to be successful because information that is personally relevant to the individual is more likely to be used.[20] So far, however, there has been little evidence of IHCAs' effect on symptom distress. Because cancer patients experience their illness primarily through symptoms, reduced symptom distress is a crucial outcome for cancer patients and therefore a critical indicator of successful illness management support. Research on symptom management and the need for interventions that help reduce barriers to optimal symptom relief have been declared an understudied, high-priority area at the National Cancer Institute at the National Institutes of Health.[21]

Cancer patients may have particularly much to gain from IHCAs because they often experience multiple, and frequently severe, symptoms; impaired functional status; complex emotional, psychosocial, and existential issues; and substantial worries. Also, the adverse effects of treatment are often at their worst after the patient is discharged and sent home, leaving patients with considerable symptom distress without much assistance. Furthermore, up to one-third of cancer patients develop depression and/or an anxiety disorder that requires treatment.[22–24] There is compelling evidence that cancer patients within traditional consultations often do not receive sufficient help with their symptoms and problems,[25–27] calling for better and more patient-centered models of care delivery. Interactive health communication applications that can demonstrate to reduce symptom distress and can provide cancer patients with assistance when and where they need it will make an important contribution to the care of cancer patients.

WebChoice is an Internet-based IHCA based on patient-centered principles and designed to support cancer patients in self-managing their illness and to enhance patient-centered care. WebChoice, described in more detail below, is composed of a set of components to address patients' needs, perspectives, and experiences; to enable patients to self-manage their illness; and to facilitate patient-provider communication and partnership. WebChoice allows patients to monitor their symptoms and health problems, currently and over time; provides them with individually tailored, just-in-time information and support to manage their symptoms and illness-related problems; contains self-management options that adapt instantaneously to patients' self-reported problems; and offers personal mail communication with expert nurses in cancer care who answer questions and address concerns and an e-forum for group discussion with other cancer patients.[28]

The primary purpose of WebChoice is to help cancer patients reduce their symptom distress, improve health-related quality of life (HRQoL) and emotional well-being, and enhance self-efficacy and social support. Consistent with the literature showing that self-monitoring, knowledge, and individual tailoring promote health behavior change and self-efficacy,[29–31] the self-monitoring and the information tools in WebChoice include knowledge about options for symptom relief, primarily developed to help patients self-manage and reduce symptoms. The e-communication tool that allows patients to stay connected with cancer nurses who can quickly answer questions and concerns, as well as provide emotional support, was designed to enhance emotional well-being and self-efficacy and reduce depression.[32] Patients' concerns have been linked to high levels of emotional distress.[24,32] We recently reported, in this journal, on the analysis of the content of cancer patients' messages sent to clinical nurse specialists through WebChoice. This study demonstrated that patients had many serious questions and concerns that created considerable uncertainty and anxiety that nurses with the help of WebChoice could address immediately.[33,34] Lastly, the purpose of the fellowship with other patients that is created through the e-forum is to enhance social support that in turn may be associated with improved self-efficacy and mental health, including less depression.[19,35] We therefore hypothesized that the combined components in WebChoice may reduce symptom distress and depression and increase self-efficacy, HRQoL, and social support.

Thus, the purpose of this study was to evaluate the effects of WebChoice in a 2-group prospective, repeated-measures RCT with breast and prostate cancer patients. We hypothesized that breast and prostate cancer patients who received the WebChoice intervention would have better outcomes over the 1-year study period on the primary outcomes of symptom distress compared with a control group that received links to publicly available, cancer-related Web sites. Furthermore, we hypothesized that WebChoice would also have a positive effect on the secondary outcomes of depression, self-efficacy, HRQoL, and social support.

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