Chih, M.Y., DuBenske, L.L., Hawkins, R.P., Brown, R.L., Dinauer, S.K., Cleary, J.F., & Gustafson, D.H. (2013). Communicating advanced cancer patients' symptoms via the Internet: A pooled analysis of two randomized trials examining caregiver preparedness, physical burden, and negative mood. Palliative Medicine, 27, 533–543. 

To examine the effects of an online symptom reporting system on caregiver negative mood, preparedness, and perceptions of physical burden

Following recruitment, patients were randomized to either the  Comprehensive Health Enhancement Support System (CHESS) only intervention or CHESS plus clinician report (CR). The CHESS only group of patient-caregiver dyads accessed the CHESS website for coaching, information, and communication resources for advanced-stage cancer care. At baseline and weekly, dyads “checked in” to CHESS to report needs and symptoms informed by the Edmonton Symptom Assessment System (ESAS) and Eastern Cooperative Oncology Group Performance Status. “Checking in” allowed symptom tracking to evaluate patient improvement or decline. Caregivers also reported preparedness and caregiving burden and could pose questions for future clinical visits. The CHESS plus CR group would access the CHESS website as well as have access to the ePRO system (CR) that delivered dyadic tracking information and alerts to clinicians when the patient or caregiver met certain criteria of concern. The ePRO system would support clinicians’ timely response to improve caregiver management of patient symptoms and lessen burden. Intervention technical support was provided to both groups. CHESS intervention access varied from 12–24 months based on patient diagnosis, and caregivers sequentially were assessed following the intervention.

• N = 235 caregiver-patient dyads
• MEAN AGE = 56 years for caregivers
• MALES: 35.8%, FEMALES: 64.2%
• KEY DISEASE CHARACTERISTICS: Recruited patients with advanced-stage prostate, breast, or lung cancer who received usual care, including palliative or curative treatment
• OTHER KEY SAMPLE CHARACTERISTICS: The majority of caregivers were white, spousal caregivers, educated beyond high school, and had moderate comfort with Internet use

• SITE: Multi-site  
• SETTING TYPE: Home  
• LOCATION: Northeast, Midwest, and Southwest U.S. cancer centers

• PHASE OF CARE: Late effects/survivorship
• APPLICATIONS: Palliative care

• Pooling of two randomized trials of unblinded patient-caregiver dyads
  • Data analyzed by general linear mixed modeling

• ESAS—modified for study; measured dyadic symptom distress; no reliability or validity reported but used in previous studies
• Preparedness Scale (subscale of Family Care Inventory)—used to examine caregiver task preparedness; had sustained high internal consistency (Cronbach’s alpha = 0.79–0.85)
• Physical Burden Scale (subscale of Caregiver Burden Inventory)—used to examine effect of caregiving on caregiver health; high sustained internal consistency (alpha = 0.78–0.85)
• Shortened Version of the Profile of Mood States (SV-POMS)—used to measure caregiver negative mood and depression; sustained high internal consistency (alpha = 0.92–0.96)

Caregivers in the CHESS plus CR group reported more positive moods than those in the CHESS alone group at 6 months (p = 0.009) and 12 months (p = 0.004). However, the two groups did not differ significantly on caregiver preparedness or physical burden at 6- and 12-month assessment.

Online delivery of information, communication, and coaching resources, combined with a format that supports patient and caregiver reporting of symptoms to facilitate clinician-caregiver timely communication, has the potential to improve caregiver mood and minimize distress of patients with advanced-stage cancer.

• Key sample group differences that could influence results—authors report that results may underestimate the potential impact of CHESS plus CR for those who benefit the most
• Findings not generalizable—authors report that the majority of patients in the sample are well-educated Caucasians. This may limit the ability to generalize the results to other ethnic populations. As a result of CR being integrated in CHESS, the study could not assess how CR alone would influence caregiver outcomes.
• Subject withdrawals 10% or greater
• Other limitations/explanation: Lack of blinding for caregivers, patients, and clinicians

Advances in technology offer opportunities for oncology clinicians to partner with patients and their caregivers to promote patient and caregiver health during the cancer trajectory. Issues such as clinician heavy workload and continued clinical focus on patient needs challenge oncology clinicians in redefining workplace approaches to improve outcomes for patients and their caregivers.