Deconstructing therapeutic mechanisms in cancer support groups: do we express more emotion when we tell stories or talk directly to each other?

Studies indicate that story-telling and emotional expression may be important therapeutic mechanisms. This study examined how they work together over 1 year of supportive-expressive group therapy (SET). Participants were 41 women randomized to SET. We coded emotional expression and story types (story vs. non-story) at the initial session, 4, 8, and 12 months. Women engaged in more storytelling in their initial than later sessions. In later sessions, women expressed significantly more emotion, specifically compassion and high-arousal positive affect. Direct communication (non-story) allowed more positive but also more defensive expression as women supported and challenged each other. Greater hostility in non-story and greater constrained anger during story were associated with increasing depression. Greater high-arousal positive affect in non-story and greater primary negative affect in story were associated with increasing social network size. These results inform clinicians about cues they might use to improve the effectiveness of cancer support groups.

Effects of supportive-expressive group therapy on pain in women with metastatic breast cancer.

OBJECTIVE: To examine whether a group intervention including hypnosis can reduce cancer pain and trait hypnotizability would moderate these effects. DESIGN: This randomized clinical trial examined the effects of group therapy with hypnosis (supportive-expressive group therapy) plus education compared to an education-only control condition on pain over 12 months among 124 women with metastatic breast cancer. MAIN OUTCOME MEASURES: Pain and suffering, frequency of pain, and degree of constant pain were assessed at baseline and 4-month intervals. Those in the treatment group also reported on their experiences using the hypnosis exercises. RESULTS: Intention-to-treat analyses indicated that the intervention resulted in significantly less increase in the intensity of pain and suffering over time, compared to the education-only group, but had no significant effects on the frequency of pain episodes or amount of constant pain, and there was no interaction of the intervention with hypnotizability. Within the intervention group, highly hypnotizable participants, compared to those less hypnotizable, reported greater benefits from hypnosis, employed self-hypnosis more often outside of group, and used it to manage other symptoms in addition to pain. CONCLUSION: These results augment the growing literature supporting the use of hypnosis as an adjunctive treatment for medical patients experiencing pain.

Psychosocial predictors of resilience after the September 11, 2001 terrorist attacks.

The terrorist attacks of September 11, 2001 inflicted distress beyond those directly exposed, thereby providing an opportunity to examine the contributions of a range of factors (cognitive, emotional, social support, coping) to psychological resilience for those indirectly exposed. In an Internet convenience sample of 1281, indices of resilience (higher well-being, lower distress) at baseline (2.5-12 weeks post-attack) were each associated with less emotional suppression, denial and self-blame, and fewer negative worldview changes. After controlling for initial outcomes, baseline negative worldview changes and aspects of social support and coping all remained significant predictors of 6-month outcomes, with worldview changes bearing the strongest relationship to each. These findings highlight the role of emotional, coping, social support, and particularly, cognitive variables in adjustment after terrorism.

Supportive-expressive group therapy for primary breast cancer patients: a randomized prospective multicenter trial.

OBJECTIVE: The aim is to evaluate the effectiveness of a manualized 12-week supportive-expressive group therapy program among primary breast cancer patients treated in community settings, to determine whether highly distressed patients were most likely to benefit and whether therapist's training or experience was related to outcome. METHOD: Three hundred and fifty-three women within one year of diagnosis with primary breast cancer were randomly assigned to receive supportive-expressive group therapy or to an education control condition. Participants were recruited from two academic centers and nine oncology practices, which were members of NCI's Community Clinical Oncology Program (CCOP) and were followed over 2 years. RESULTS: A 2x2x19 analysis of variance was conducted with main effects of treatment condition, cohort, and baseline distress and their interactions. There was no main effect for treatment condition after removing one subject with an extreme score. Highly distressed women did not derive a greater benefit from treatment. Therapist training and psychotherapy experience were not associated with a treatment effect. CONCLUSIONS: This study provides no evidence of reduction in distress as the result of a brief supportive-expressive intervention for women with primary breast cancer. Future studies might productively focus on women with higher initial levels of distress.

Effects of supportive-expressive group therapy on survival of patients with metastatic breast cancer: a randomized prospective trial.

BACKGROUND: This study was designed to replicate our earlier finding that intensive group therapy extended survival time of women with metastatic breast cancer. Subsequent findings concerning the question of whether such psychosocial support affects survival have been mixed. METHODS: One hundred twenty-five women with confirmed metastatic (n = 122) or locally recurrent (n = 3) breast cancer were randomly assigned either to the supportive-expressive group therapy condition (n = 64), where they received educational materials plus weekly supportive-expressive group therapy, or to the control condition (n = 61), where they received only educational materials for a minimum of 1 year. The treatment, 90 minutes once a week, was designed to build new bonds of social support, encourage expression of emotion, deal with fears of dying and death, help restructure life priorities, improve communication with family members and healthcare professionals, and enhance control of pain and anxiety. RESULTS: Overall mortality after 14 years was 86%; median survival time was 32.8 months. No overall statistically significant effect of treatment on survival was found for treatment (median, 30.7 months) compared with control (median, 33.3 months) patients, but there was a statistically significant intervention site-by-condition interaction. Exploratory moderator analysis to explain that interaction revealed a significant overall interaction between estrogen-receptor (ER) status and treatment condition (P = .002) such that among the 25 ER-negative participants, those randomized to treatment survived longer (median, 29.8 months) than ER-negative controls (median, 9.3 months), whereas the ER-positive participants showed no treatment effect. CONCLUSIONS: The earlier finding that longer survival was associated with supportive-expressive group therapy was not replicated. Although it is possible that psychosocial effects on survival are relevant to a small subsample of women who are more refractory to current hormonal treatments, further research is required to investigate subgroup differences.

Emotional expression and diurnal cortisol slope in women with metastatic breast cancer in supportive-expressive group therapy: a preliminary study.

We examined coded emotional expression during an initial therapy session and its association with a known physiological risk factor for early death, aberrant diurnal cortisol slope, in women with metastatic breast cancer. Out of 64 women with metastatic breast cancer randomized to a multi-site clinical intervention trial of supportive-expressive group therapy (SET), a subsample of 29 met eligibility criteria for this study. We tested whether longer mean durations of primary negative affect (fear, sadness, and anger) expression were associated with steeper diurnal cortisol slopes after adjusting for speaking time, repressive-defensiveness, anxiety, and the interaction between repressive-defensiveness and anxiety. We found that steeper cortisol slopes were related to lower repressive-defensiveness and greater primary negative affect expression in line with a priori hypotheses. Additionally we explored whether coded positive affect, defensive/hostile affect, constrained anger, and the interaction between primary negative affect and repressive-defensiveness explained additional variance in diurnal cortisol patterns.

Post-transplantation lymphoproliferative disease in heart and heart-lung transplant recipients: 30-year experience at Stanford University.

BACKGROUND: Post-transplantation lymphoproliferative disease (PTLD) is an important source of morbidity and mortality in transplant recipients, with a reported incidence of 0.8% to 20%. Risk factors are thought to include immunosuppressive agents and viral infection. This study attempts to evaluate the impact of different immunosuppressive regimens, ganciclovir prophylaxis and other potential risk factors in the development of PTLD. METHODS: We reviewed the records of 1026 (874 heart, 152 heart-lung) patients who underwent transplantation at Stanford between 1968 and 1997. Of these, 57 heart and 8 heart-lung recipients developed PTLD. During this interval, 4 different immunosuppressive regimens were utilized sequentially. In January 1987, ganciclovir prophylaxis for cytomegalovirus serologic-positive patients was introduced. Other potential risk factors evaluated included age, gender, prior cardiac diagnoses, HLA match, rejection frequency and calcium-channel blockade. RESULTS: No correlation of development of PTLD was found with different immunosuppression regimens consisting of azathioprine, prednisone, cyclosporine, OKT3 induction, tacrolimus and mycophenolate mofetil. A trend suggesting an influence of ganciclovir on the prevention of PTLD was not statistically significant (p = 0.12). Recipient age and rejection frequency, as well as high-dose cyclosporine immunosuppression, were significantly (p < 0.02) associated with PTLD development. The prevalence of PTLD at 13.3 years was 15%. CONCLUSIONS: The overall incidence of PTLD was 6.3%. It was not altered by sequential modifications in treatment regimens. Younger recipient age and higher rejection frequency were associated with increased PTLD occurrence. The 15% prevalence of PTLD in 58 long-term survivors was unexpectedly high.

Psychological distress and pain significantly increase before death in metastatic breast cancer patients.

OBJECTIVE: This study was designed to examine the course of psychological distress and pain from study entry to death in 59 women with metastatic breast cancer participating in a randomized trial of the effects of group psychotherapy on psychosocial outcomes and survival. It was hypothesized that psychological distress would increase significantly before death independent of changes in pain. METHOD: Data were collected as part of a larger study (N = 125). Analyses were based on data from a subset of women who had died and for whom we had data from at least three assessments. Mean levels of mood, trauma symptoms, depression symptoms, well-being, and pain over three time points were examined: at baseline (T1), the second-to-last assessment before death (T2), and the last assessment before death (T3). RESULTS: Results indicate that while psychological distress remained relatively constant or declined from T1 to T2, means on all measures significantly changed in the hypothesized direction from T2 to T3. Neither self-reported pain, nor the passage of time, appeared to account for these changes. Additionally, participation in group psychotherapy did not have a significant impact on this change in distress proximal to death. CONCLUSIONS: Results suggest that specialized end-stage clinical interventions are particularly needed for cancer patients as they approach death. Moreover, intervention studies for patients with deteriorating illnesses may need to take this "spike" in psychological distress and pain proximal to death into account to avoid Type II errors in evaluations of psychological outcomes.

Psychosocial intervention for lesbians with primary breast cancer.

This study examined the effects of a Supportive-Expressive group therapy intervention offered to lesbians with early stage breast cancer. Twenty lesbians diagnosed with breast cancer in the previous 12-months were recruited and assessed at baseline, and at 3, 6, and 12 months after the group intervention. During the 12-week intervention, group members focused on the problems of a new diagnosis, coping with the illness and treatment, mood changes, coping responses and self-efficacy, improving relationships with family, friends and physicians, the impact of the illness on life, pain and sleep, and changes in body image and sexuality. A within-subject slopes analysis was conducted on data collected for each woman over the first year. As predicted, women reported reduced emotional distress, intrusiveness, and avoidance, and improved coping. There were significant changes in their social support, but in the unexpected direction. Instrumental support and informational support declined. However, conflict in family relations also declined, while trends were found towards more cohesiveness and expressiveness. Participants reported less pain and better sleep. There were no changes in body image, sexuality, or attitudes toward health-care providers. These results suggest that Supportive/Expressive group intervention appears to be helpful for lesbians with breast cancer.

A phase II, double-blind, randomized, placebo-controlled clinical trial of tgAAVCF using maxillary sinus delivery in patients with cystic fibrosis with antrostomies.

tgAAVCF, an adeno-associated cystic fibrosis transmembrane conductance regulator (CFTR) viral vector/gene construct, was administered to 23 patients in a Phase II, double-blind, randomized, placebo-controlled clinical trial. For each patient, a dose of 100,000 replication units of tgAAVCF was administered to one maxillary sinus, while the contralateral maxillary sinus received a placebo treatment, thereby establishing an inpatient control. Neither the primary efficacy endpoint, defined as the rate of relapse of clinically defined, endoscopically diagnosed recurrent sinusitis, nor several secondary endpoints (sinus transepithelial potential difference [TEPD], histopathology, sinus fluid interleukin [IL]-8 measurements) achieved statistical significance when comparing treated to control sinuses within patients. One secondary endpoint, measurements of the anti-inflammatory cytokine IL-10 in sinus fluid, was significantly (p < 0.03) increased in the tgAAVCF-treated sinus relative to the placebo-treated sinus at day 90 after vector instillation. The tgAAVCF administration was well tolerated, without adverse respiratory events, and there was no evidence of enhanced inflammation in sinus histopathology or alterations in serum-neutralizing antibody titer to adeno-associated virus (AAV) capsid protein after vector administration. In summary, this Phase II trial confirms the safety of tgAAVCF but provides little support of its efficacy in the within-patient controlled sinus study. Various potentially confounding factors are discussed.

Behavioral phenotypic variation in autism multiplex families: evidence for a continuous severity gradient.

Recent genetic investigations of autism have studied multiplex families, typically including families with multiple siblings who meet criteria for a diagnosis of autism. However, little is known about the specific behavioral characteristics of siblings with autism in these multiplex families. We investigated the behavioral phenotypic variability and similarity of 351 siblings with autism in 171 multiplex families using cluster analysis and correlations. The results of cluster analyses showed that the individuals with autism could be characterized on a severity gradient: a continuum based on severity of symptoms and impairment as measured by Autism Diagnostic Interview-Revised (ADI-R) scores, verbal-nonverbal status, and nonverbal IQ scores. Clusters based on scores from the ADI-R for the autism diagnostic criteria of the DSM-IV and nonverbal IQ scores still represented a severity gradient when the effects of verbal-nonverbal status were removed. The severity gradient was shown to be heritable, with a sib correlation of 30% or a heritability of 60%. In summary, in a sample of 171 autism multiplex families, there was no evidence of discrete behaviorally defined subgroups of affected individuals or families characterized by distinct patterns of behavioral symptoms. Rather, the clusters could be characterized along a single, heritable, continuous severity dimension.

How to launch a national Internet-based panel study quickly: lessons from studying how American are coping with the tragedy of September 11, 2001?

This article reports on the planning, development, and implementation of a large national Internet-based panel study of how Americans are coping with the terrorist attacks of September 11, 2001. The study was designed to determine predictors and correlates of risk and resilience, both cross-sectionally and longitudinally. In order to acquire timely and meaningful data, we developed/adapted an extensive set of measures, obtained human subjects approval, and posted a research Web site just 17 days after the attacks. This article describes the major hurdles we confronted and the guidelines we recommend regarding these topics, including the methodological trade-offs inherent in Internet-based research, information technology requirements and tribulations, human subjects issues, selection of measures and securing permission for their use, and the challenges of participant recruitment. We also discuss issues that we did not anticipate, including the survey intervention. We focus not on findings, but on the concrete procedural, administrative, technical, and scientific challenges we encountered and the solutions we devised under considerable time and resource pressures.