eHealth: Caregiver Use of Online System Reduces Symptom Distress in Patients with Non–Small Cell Lung Cancer

Get Permission

The results of a study reported by David H. Gustafson, PhD, Research Professor at the University of Wisconsin-Madison, and colleagues in Cancer suggest that informal caregiver (eg, family member) use of a specifically designed online system to support palliative care reduces symptom distress in patients with non–small cell lung cancer (NSCLC).1

CHESS Components

The online support system, known as CHESS (Comprehensive Health Enhancement Support System), is a noncommercial website created by clinical, communication, and systems scientists at the University of Wisconsin. The CHESS Coping with Lung Cancer site provides organized lung cancer, caregiving, and bereavement information; serves as a channel for communication with and support from peers, experts, clinicians, and users’ social networks; and acts as a coaching tool by providing algorithm-based feedback in response to information gathered from users.

The system includes a clinician report that summarizes caregiver and patient ratings of patient health status and lists questions for the next clinic visit. Clinicians also received email alerts before a scheduled patient visit and alerts whenever a symptom rating exceeded 7 on a scale of 1 to 10.

Study Details

In the study, 285 caregiver-patient pairs were randomly assigned to standard care plus training on and access to either CHESS (n = 144) or Internet use with a list of other lung cancer–specific websites (Internet group, n = 141). Patients had to have stage IIIA, IIIB, or IV NSCLC, be English-speaking, and have a perceived life expectancy of at least 4 months. The study interventions continued up to 25 months or for 13 months after the patient’s death, with caregivers having access to bereavement resources after patient death.

The primary study outcome was caregiver-reported patient symptom distress, measured using a modified Edmonton Symptom Assessment Scale that assessed pain, nausea, appetite, shortness of breath, fatigue, constipation, and diarrhea. For total score, the values ranged from 0 (absence of all symptoms) to 70 (worst possible on all symptoms). Although the CHESS and Internet interventions were designed to support informal caregivers, patients could also use them.

Among patients in the CHESS and Internet groups, mean ages were 62 and 61 years, 50% and 48% were women, 65% and 67.5% had stage IV disease, mean time from diagnosis to study intervention was 343 and 370.5 days, 66% and 75% had ECOG performance status of 0 or 1. In addition, 47% and 38% were currently receiving first-line treatment and 43% and 51% had failed first-line treatment and were receiving or had received additional treatment, 30.5% and 37.5% had an education level of high school diploma or less, and 55.5% and 62% had another major illness or health condition.

Among caregivers in the CHESS and Internet groups, mean ages were 57 and 55 years, 66% and 70.5% were women, 20% and 22.5% had an education level of high school diploma or less, and 43% and 47% had a major illness or health condition. The only significant between-group difference in baseline characteristics was in caregiver Internet comfort scores (0 to 4, with 4 indicating “extremely comfortable”), which were 2.4 in the CHESS group and 2.7 in the Internet group (P = .044).

Lower Symptom Distress Scores

Symptom distress scores were adjusted for baseline scores, study site, caregiver-patient relationship, and caregiver race. Overall, the CHESS group reported a significantly lower mean score (17.04 vs 22.32, P = .005).

Differences at month 2 (16.75 vs 21.21, P = .051), month 4 (16.89 vs 21.72, P = .031), month 6 (16.03 vs 22.95, P = .004), and month 8 (18.47 vs 23.39, P = .061) were consistent with the main effect difference. Analysis of individual symptoms showed significant between-group differences for all except nausea.

Potential Survival Differences

During the study, the investigators observed that caregivers from the Internet group were transitioning to bereavement status more frequently than caregivers from the CHESS group. The investigators therefore performed an exploratory survival analysis, finding some differences between study groups and when survival was assessed according to whether patients in the CHESS group did or did not actually use CHESS.

Overall, during the 2year intervention, 62% of patients in the CHESS group and 73% of patients in the Internet group died, with the CHESS group having a nonsignificant increase in median survival (14.8 vs 10.1 months, P = .172). After adjustment for age, sex, cancer stage, treatment history, and interval between diagnosis and intervention, the reduced risk for death in the CHESS group approached significance (hazard ratio [HR] = 0.75, P = .083).

CHESS was used at least once by 73% of caregivers and 50% of patients, with 52% and 38%, respectively, using the system at least five times. Median survival was 19.2 months among patients who used CHESS at least once, compared with 9.9 months among those who did not (P = .003), with the difference remaining significant after controlling for age, sex, cancer stage, treatment history, and interval between diagnosis and intervention (adjusted HR = 0.49, P = .009). Survival was also significantly better among CHESS group patients who used CHESS than among all patients in the Internet group (adjusted HR = 0.58, P = .012).

There were significant differences at baseline between CHESS group patients who used CHESS and those who did not with regard to sex of the caregiver (women for 55% vs 77%, P = .008) and treatment history (no treatment in 12% vs 2%, currently receiving first-line treatment for 47% vs 47%, in remission after first-line treatment for 7% vs 0%, and additional treatment after first-line failure for 35% vs 51%; overall P = .021). Caregiver sex also differed significantly between CHESS group patients who used CHESS and the Internet group, with a difference in treatment history approaching significance.

Survival and Suffering

To assess whether prolonged survival might have been accompanied by prolonged suffering, caregiver-reported symptom distress scores for CHESS group patients who used CHESS were compared with those who did not and with Internet group patients at 2, 4, 6, and 8 months prior to death among patients dying during the study. No significant differences in scores were found, suggesting that patients who lived longer did not suffer more.

In considering why a system designed mainly for caregivers might affect outcomes in patients, the investigators stated, “Information in CHESS may help caregivers provide better informal care, and the clinician report may have allowed both caregivers and clinicians to manage symptoms more effectively…. With better symptom management, patients may have been encouraged to adhere to treatment. The CHESS clinician report also may have enabled clinicians to better address patient and caregiver concerns during clinic visits. In interviews, some clinicians reported that caregivers who were using CHESS were more engaged during clinic visits and better able to describe their concerns and the patient’s symptoms.”

The investigators concluded, “Additional rigorous studies are needed to determine whether online emotional and instrumental support for both patients and caregivers can ease distress and lengthen survival. An effective online system of palliative care may offer a low-cost end-of-life intervention that would be relatively easy to distribute widely.” ■

Disclosure: The study was supported by a National Cancer Institute grant. The authors reported no potential conflicts of interest.


1. Gustafson DH, Dubenske LL, Namkoong K, et al: An eHealth system supporting palliative care for patients with non-small cell lung cancer: A randomized trial. Cancer. January 25, 2013.

Related Articles

SIDEBAR: Lessons of 2 Decades' Experience with CHESS

Our work on an Internet-based intervention for lung cancer confirmed what many other studies have shown about technologic interventions for health-care consumers—that such interventions can improve quality of life for caregivers and patients.1 We expected this result in part because of the...