Professional Documents
Culture Documents
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Volume 30, Number 1, 2005 Breast Cancer Online Support 55
of these issues by reducing barriers to care among those with ac- Pennebaker and colleagues pioneered research on the re-
cess to the Internet and by providing readily available transcripts lationships between linguistic variables associated with word
that can be used to examine potential mechanisms of action. choices and psychological processes (17). Among individuals
Although research on Internet-based interventions is na- asked to write about emotional or traumatic experiences, im-
scent, several studies have documented the potential of the proved health has been ascribed to four patterns of word choice:
Internet to increase the impact of psychosocial services for can- (a) high use of positive emotion words (e.g., happy, joyful), (b)
cer survivors. Survivors who are unable to participate in tradi- moderate use of negative emotion words (e.g., sad, angry), (c)
tional face-to-face support groups—those who live at great dis- increasing use of causal and insight words (e.g., because, there-
tance from the clinic (e.g., rural communities), have demanding fore) (18), and (d) change over time in the use of personal pro-
work hours, do not have a convenient means of transportation, or nouns (19). Although there is some evidence that expressive
are too fatigued or physically debilitated to travel—may be writing in women with breast cancer is associated with improve-
more likely to participate in Internet-based APTs (10). Consis- ments in physical symptoms (20), little is know about the rela-
further hypothesized that higher levels of expression of health- tions for using the Web site. The Web site for the online coping
related concerns (e.g., tumor characteristics, treatments, etc.) group, developed using HTML and Practical Extraction and Re-
could detract from use of the coping exercises and would be as- port Language, offered a bulletin board for asynchronous group
sociated with less improvement in quality of life over time. discussion, a dictionary of medical terminology, a database of
breast cancer resources and Web sites, information and coping
METHOD advice for management of common physical symptoms such as
Participants pain and fatigue, a forum for sharing artwork and poetry, and six
structured coping-skills training exercises (each of which was
At the outset of the study, women with histologically con-
presented across a series of Web pages). Each coping exercise
firmed Clinical Stage 1 or 2 breast cancer were considered eligi-
was designed to be completed by participants over the course of
ble for participation in the study. After randomization, it was
2 weeks and adapted from structured exercises provided in man-
discovered that a small number of participants were most likely
uals used by face-to-face APTs (23,24). Consistent with the
Stage 0 or Stage 3 given their self-reported medical histories.
Eastern Cooperative Oncology Group (ECOG) performance ings reported by Cordova et al. to standardized scores on the 6
status (26). The measure has also been demonstrated to be sen- categories composing the cognitive mechanisms domain to de-
sitive to longitudinal change in persons with cancer. The rive scores for two cognitive factors of uncertainty and logic.
EuroQol–5D “feeling thermometer” is a single-item visual ana- Word use related specifically to cancer treatment was deter-
logue scale designed to measure self-rated overall health (27). mined using a supplemental LIWC category described by Owen
Participants were asked to rate their overall health on a scale et al. (22). Finally, general concerns related to health were mea-
ranging from 0 (least desirable state of health you can imagine) sured using the automated Gottschalk–Gleser scales (PCAD2000)
to 100 (perfect health). The measure has good test–retest reli- (35). Like LIWC, PCAD2000 parses text-based data into strings
ability, concurrent validity, and sensitivity to change (28). for comparison with word-based dictionaries, but PCAD2000
analyzes clauses rather than individual words as the unit of anal-
Distress. Psychological distress was assessed using the ysis. Rater-scored versions of the Gottschalk–Gleser scales have
Impact of Events scale (IES). The IES is a 22-item, Likert-type been validated in medical populations (36), and evidence for the
12-week intervention. Pearson correlations were used to evalu- cific concerns. Interactions between group assignment and
ate the relationship between linguistic variables derived from baseline quality of life, emotional well-being, breast-cancer-
written messages and change scores calculated for each depend- specific concerns, distress, and symptom prevalence were not
ent variable. observed. However, a significant interaction emerged between
group assignment and baseline health status (EuroQol-5D) on
RESULTS follow-up health status, F(1, 39) = 16.4, p < .001, such that par-
Participants ticipants with a low self-reported health status at baseline who
Figure 1 provides a detailed account of patient enrollment, were assigned to the treatment condition (M baseline health sta-
allocation, follow-up, and attrition across the course of the tus = 58.8, M final health status = 81.8) exhibited greater im-
study. Two hundred forty-three consecutive women living with provements in health status over time than did participants as-
breast cancer were assessed for eligibility and offered participa- signed to the wait-list control group (M baseline health status =
tion in the study (5). Of these women, 154 expressed interest in 64.4, M final health status = 76.7; see Figure 3). Among those
Use and Evaluation of the Web Site Quality of Participation and Changes
Follow-up questionnaires asked participants in the treat- in Quality of Life
ment condition to evaluate different aspects of the Web site. Par- To test the hypothesis that linguistic indicators of emotional
ticipants found the coping exercises to be most helpful (68.2% expression, cognitive processing, and health-related concerns
of participants), followed by the coping group/bulletin board would be associated with change over time in quality of life, cor-
(59.1%) and information about coping with specific symptoms relations between linguistic variables (derived from messages
(57.2%). Of the participants, 82% reported that either the coping posted to the online discussion group) and change scores for the
exercises or the discussion group was helpful. Participants aver- primary dependent variables were calculated. These results are
aged 35.5 total logins to the Web site, 52.2 hits to the bulletin provided in Table 3. Greater expression of sadness, but not anxi-
board, 9.5 postings sent to the bulletin board, 73.4 uses of the ety, anger, or overall negative affective states, was associated
coping exercises, 3.4 hr spent logged in to the Web site, and 8.2 with improvements in overall quality of life (r = .49, p = .023).
min per session over the course of the 12-week intervention. Use Greater expressions of anxiety, sadness, and overall negative af-
of each component of the intervention over time is displayed in fect were associated with improved emotional well-being (rs =
Figure 2. .50–.61, ps = .005–.02). Similarly, expressing higher levels of
anxiety and sadness, but not anger or overall negative effect, was
Effect of Intervention on Quality of Life associated with reductions in intrusive cancer-related thoughts
Baseline and follow-up scores on all primary dependent (rs = .47–.60, ps = .004–.02). Emotional expression was not sig-
variables are provided in Table 2. No significant main effects of nificantly associated with change over time in health status,
group assignment were observed for the primary outcome mea- physical symptoms, or breast-cancer-related concerns. Depth of
sures. Trivial or small effect sizes for the main effect of group cognitive processing in the posted messages was correlated with
were observed for cancer-related intrusive thoughts, symptom improved emotional well-being (r = .54, p = .012) but was not
prevalence, self-reported health status, and breast-cancer-spe- associated with overall quality of life, health status, intrusive
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59
FIGURE 1
TABLE 1
Demographic Characteristics of Participants
M ± SD % M ± SD %
FIGURE 2 Use of the SURVIVE Web site over the course of the 12-week intervention study by women initially randomized into the treatment
group (n = 32) and women assigned to the waiting-list control who later crossed-over into a treatment group (n = 18). Note: Log-In = mean number of
times participants logged in to the Web site; Bulletin = mean number of times participants accessed the bulletin board support group; Message = mean
number of messages posted by participants to the support group; Coping = mean number of coping skills training pages opened by participants;
Symptom = mean number of times participants viewed pages associated with information about symptom management; Resource = mean number of
times participants accessed breast cancer resource database Web pages; Definition = mean number of times participants viewed pages associated with
definitions of cancer-related medical terms.
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Volume 30, Number 1, 2005 Breast Cancer Online Support 61
TABLE 2
Baseline and 12-Week Follow-Up Scores Across Outcome Measures by Treatment Group
Health-related FACT–Total 81.0 14.3 85.3 11.8 78.3 15.7 88.7 10.8 0.33 (1, 45) 0.30
quality of life EQ-5D Thermometer 78.4 17.2 83.5 17.1 75.6 20.2 85.4 9.9 16.40 (1, 39)** 0.13
Psychological FACT EWB 15.4 4.0 15.3 3.6 14.8 3.9 16.5 2.6 1.00 (1, 45) 0.38*
well-being IES total 0.96 0.6 0.95 0.7 1.10 0.6 0.95 0.6 1.63 (1, 47) 0.00
Physical MSAS Symptom 10.9 7.4 8.7 6.2 11.6 7.6 8.4 6.3 1.85 (1, 41) 0.05
well-being Prevalence
FACT Breast- 23.1 5.8 23.9 6.3 22.2 6.5 25.5 4.8 2.17 (1, 48) 0.28
Note. FACT = Functional Assessment of Cancer Therapy–Breast Cancer Form; EWB = emotional well-being; IES = Impact of Events scale; MSAS = Me-
morial Symptom Assessment Scale;
an = 27. bn = 26.
DISCUSSION
As reported elsewhere (5), nearly 45% of women who were
approached to participate in the study expressed a strong interest
to do so. Only a small percentage of the participants were in-
volved in support services of any kind at the time of study entry,
suggesting that this Internet-based group improved the accessi-
bility of supportive care options to this survivor population.
Many participants expressed difficulty finding or being able to
attend support services in their home communities, and average
FIGURE 3 Interaction between group assignment and improvement travel time to receive breast cancer treatment or follow-up was
in self-reported overall health as measured by the EQ-5D thermometer over 1 hr. Inherent to most studies of this nature, however, there
(Time 2 score – Time 1 score), significant at p < .001.
were barriers to participation (i.e., the consent process, lengthy
questionnaires to complete). Among those who expressed a
cancer-related thoughts, symptom prevalence, or breast-can- strong interest in participating in the study, only 49% provided
cer-related concerns. More frequent mention of health-related informed consent to enroll in the study, and 65.3% of these actu-
concerns in postings to the online discussion groups was associ- ally completed the baseline assessment. Thus, participation in
ated with worse outcomes for overall quality of life (r = –.48, p = this trial may underestimate participation in community-based
.027), health status (r = –.60, p = .006), intrusive cancer-related programs, if information about such programs was provided
thoughts (r = –.56, p = .008), and symptom prevalence (r = –.43, routinely in medical settings in which women with breast cancer
p = .049). More frequent use of words related to cancer treat- receive treatment and follow-up care.
ment was associated with declines in emotional well-being (r = Results of this pilot intervention provided mixed results for
–.55, p = .01). Use of words related to health and cancer treat- our hypotheses that participation in the self-guided Internet cop-
ment was not associated with stage of disease or treatment vari- ing group would result in improved quality of life. No signifi-
ables. It should be noted that significance levels were not ad- cant main effects were observed for the primary dependent vari-
justed for experiment-wise type I error rate, so individual ables. However, there was a trend toward greater improvement
correlation coefficients should be interpreted with caution. Fi- in emotional well-being for treatment relative to control par-
nally, clusters of linguistic variables related to cognitive pro- ticipants, and effect sizes for overall quality of life, emotional
cessing (i.e., uncertainty and logic), affective processing (i.e., well-being, and breast-specific concerns were modestly sized.
anxiety, sadness, anger, and positive emotions), and health-re- In addition, participants with low health status at the begin-
lated concerns (i.e., health and cancer treatment) were entered ning of the study who were provided with access to the treat-
into multiple regression models predicting change scores on the ment group demonstrated significantly greater improvement
62 Owen et al. Annals of Behavioral Medicine
TABLE 3
Pearson Correlation Coefficients Between Linguistic Variables Associated With Messages Posted to Online Support Groups
and Change Scores on Dependent Variables
All affect 0.03 –0.15 0.50* 0.08 –0.32 –0.02 4.44 1.3 2.6–9.0
Negative emotions 0.06 –0.01 0.51* 0.29 –0.26 –0.04 1.54 1.1 0–5.6
Anxiety 0.02 0.16 0.61** 0.47* 0.08 0.04 0.41 0.3 0–1.3
Sadness 0.49* 0.37 0.58** 0.60** 0.26 0.26 0.32 0.2 0–0.9
Anger 0.26 0.31 0.07 0.34 0.11 0.11 0.19 0.2 0–0.5
Positive emotions –0.04 –0.29 0.14 –0.30 –0.20 0.00 2.87 0.7 1.4–4.2
Cognitive mechanisms –0.15 –0.23 0.54* –0.06 –0.12 –0.02 7.05 1.4 4.8–10.4
Note. Positive correlation coefficients indicate that a higher proportion of words related to the linguistic variable are associated positively with improve-
ment on the dependent variable; multiple R2 for Time 2 values includes variance associated with Time 1 score for the dependent variable, with significance
tested for the set of linguistic variables after adjusting for Time 1 scores.
*p < .05. **p < .01.
than women assigned to the control group. These results suggest The study presented here is among the first to quantitatively
that women living with early-stage breast cancer who feel that characterize the relationship between levels of participation in
their overall health has been impacted by their cancer, particu- psychosocial intervention for cancer and subsequent changes
larly those who have been more recently diagnosed, are most over time in quality of life. Consistent with our hypotheses, im-
likely to benefit from participation in this type of intervention. provements over time in a number of quality of life domains
Our efforts to systematically identify and offer participation to were associated with three general patterns of word use: greater
eligible women may have resulted in a study sample that was ventilation of feelings associated with anxiety and sadness,
less distressed than samples obtained by other researchers (5). greater efforts to cognitively process the cancer experience, and
This hypothesis is supported by our finding that the majority of less expression of somatic and treatment-related concerns. Our
participants in this study sought to serve as a provider of support findings with regard to linguistic indicators of emotional expres-
to other women and offers additional explanation for the ab- sion mirror previously reported relationships between question-
sence of main effects. Targeted provision of interventions of this naire-derived estimates of emotional expression and adjustment
type to women with identified distress could improve power to to breast cancer (14,44). Stanton et al. (45) provided a strong
evaluate the effects of intervention. theoretical framework for the relationship between emotional
It is important to note that this was a self-guided interven- approach coping and adjustment to stressful situations, suggest-
tion in which the investigators monitored but did not participate ing that emotional approach may facilitate the habituation to and
in the online discussions. This self-guided approach was se- reappraisal of the stressor, promote social affiliation and sup-
lected to address the perceived weaknesses of existing online port, and promote awareness of cues related to progress toward
and face-to-face resources for cancer survivors: (a) Although personal goals. General expression of cognitive words, but not
manualized, facilitated groups appear to have quality of life ben- specific linguistic indicators of cognitive processing, was asso-
efits for participants, such services are not widely available in ciated only with improved emotional well-being. Although sug-
the community for a variety of reasons addressed elsewhere (2), gestive that active efforts to understand and cope with the cancer
and (b) although there are many existing Internet-based forums experience may reduce mood disturbance, further research to
that promote communication between cancer survivors, these identify the relationships between linguistic indicators of cogni-
forums do not provide the types of structured cognitive–behav- tive processing and coping efforts is necessary. Expression of
ioral or supportive–expressive exercises that have been demon- health-related concerns was associated with worse quality of
strated in the literature to be of benefit. Thus, we set out to create life outcomes but was not associated with clinical stage, sug-
an online forum that would draw on the strengths of existing on- gesting that effortful writing about these concerns reflects rumi-
line forums (e.g., widely available and minimizing the need for nation or avoidance of alternative cognitive and emotional strat-
intensive clinician involvement) while providing the kinds of egies for adjusting to the challenges associated with cancer. The
exercises that have been shown to result in quality of life im- high level of variance in change scores across dependent vari-
provements. Active facilitation, although more costly, could be ables accounted for by the linguistic variables (R2s = .37–.91)
expected to increase the magnitude of effects observed in our suggests that textual analysis of naturalistic interactions in on-
study. line support communities has substantial potential for improving
Volume 30, Number 1, 2005 Breast Cancer Online Support 63
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