A comparison of two models of follow-up care for adult survivors of childhood cancer.

PURPOSE: Few studies have compared follow-up-care models for adult survivors of childhood cancer (ASCCs), though choice of model could impact medical test adherence, and health-related quality of life (QOL). This study compared two follow-up-care models, cancer-center-based versus community-based, for ASCCs in Alberta, Canada, to determine which model would demonstrate greater ASCC adherence to guideline-recommended medical screening tests for late effects, QOL, physical symptoms, and adherence to yearly follow-up. METHODS: ASCC discharged to a community model (over 15 years) and those with comparable birth years (1973-1993) currently followed in a cancer center model were recruited via direct contact or multimedia campaign. Chart review identified chemotherapeutic and radiation exposures, and required medical late effect screening tests. ASCCs also completed questionnaires assessing QOL, physical symptoms, and follow-up behavior. RESULTS: One hundred fifty-six survivors participated (community (n = 86); cancer center (n = 70)). Primary analysis indicated that cancer center ASCCs guideline-recommended total test adherence percentage (Mdn = 85.4%) was significantly higher than the community model (Mdn = 29.2%, U = 3996.50, p < 0.0001). There was no significant difference in QOL for cancer center ASCCs (M = 83.85, SD = 20.55 versus M = 77.50, SD = 23.94; t (154) = 1.77, p = 0.078) compared to community-based ASCCs. Cancer center-based ASCCs endorsed from 0.4-7.1% fewer physical symptom clusters, and higher adherence to follow-up behavior in comparisons using effect sizes without p values. CONCLUSION: This study highlights the cancer center model's superiority for adherence to exposure-based medical late effect screening guidelines, cancer-specific follow-up behaviors, and the reporting of fewer physical complaints in ASCCs. IMPLICATIONS FOR CANCER SURVIVORS: ASCCs followed in a cancer center model likely benefit from earlier late-effects detection and opportunities for early intervention.

Alberta CancerBridges development of a care plan evaluation measure.

BACKGROUND: No standardized measures specifically assess cancer survivors' and healthcare providers' experience of Survivor Care Plans (scps). We sought to develop two care plan evaluation (cpe) measures, one for survivors (cpe-s) and one for healthcare providers (cpe-p), examine initial psychometric qualities in Alberta, and assess generalizability in Manitoba, Canada. METHODS: We developed the initial measures using convenience samples of breast (n = 35) and head and neck (n = 18) survivors who received scps at the end of active cancer-centre treatment. After assessing Alberta's scp concordance with Institute of Medicine (iom) recommendations using a published coding scheme, we examined psychometric qualities for the cpe-s and cpe-p. We examined generalizability in Manitoba, Canada, with colorectal survivors discharged to primary care providers for follow-up (n = 75). RESULTS: We demonstrated acceptable internal consistency for the cpe-s and cpe-p subscales and total score after eliminating one item per subscale for cpe-s, two for cpe-p, resulting in revised scales with four 7-item and 6-item subscales, respectively. Subscale scores correlated highly indicating that for each measure the total score may be the most reliable and valid. We provide initial cpe-s discriminant, convergent, and predictive validity using the total score. Using the Manitoba sample, initial psychometrics similarly indicated good generalizability across differences in tumour groups, scp, and location. CONCLUSIONS: We recommend the revised cpe-s and cpe-p for further use and development. Studies documenting the creation and standardization of scp evaluations are few, and we recommend further development of patient experience measures to improve both clinical practice and the specificity of research questions.

Shame, guilt, and communication in lung cancer patients and their partners.

Lung cancer patients report the highest distress levels of all cancer groups. In addition to poor prognosis, the self-blame and stigma associated with smoking might partially account for that distress and prevent patients from requesting help and communicating with their partners. The present study used innovative methods to investigate potential links of shame and guilt in lung cancer recovery with distress and marital adjustment. A specific emphasis was an examination of the impact of shame on partner communication. Lung cancer patients (n = 8) and their partners (n = 8) completed questionnaires and interviews that were videotaped. We report descriptive statistics and Spearman correlations between shame and guilt, relationship talk, marital satisfaction, distress, and smoking status. We coded the interviews for nonverbal expressions of shame. Greater self-reported shame was associated with decreased relationship-talk frequency and marital satisfaction, and with increased depression and smoking behaviour. Nonverbal shame behaviour also correlated with higher depression and increased smoking behaviour. Guilt results were more mixed. More recent smoking behaviour also correlated with higher depression. At a time when lung cancer patients often do not request help for distress, possibly because of shame, our preliminary study suggests that shame can also disrupt important partner relationships and might prevent patients from disclosing to physicians their need for psychosocial intervention and might increase their social isolation. Even if patients cannot verbally disclose their distress, nonverbal cues could potentially give clinicians an opportunity to intervene.

Qualitative evaluation of care plans for Canadian breast and head-and-neck cancer survivors.

BACKGROUND: Survivorship care plans (scps) have been recommended as a way to ease the transition from active cancer treatment to follow-up care, to reduce uncertainty for survivors in the management of their ongoing health, and to improve continuity of care. The objective of the demonstration project reported here was to assess the value of scps for cancer survivors in western Canada. METHODS: The Alberta CancerBridges team developed, implemented, and evaluated scps for 36 breast and 21 head-and-neck cancer survivors. For the evaluation, we interviewed 12 of the survivors, 9 nurses who delivered the scps, and 3 family physicians who received the scps (n = 24 in total). We asked about satisfaction, usefulness, emotional impact, and communication value. We collected written feedback from the three groups about positive aspects of the scps and possible improvements (n = 85). We analyzed the combined data using qualitative thematic analysis. RESULTS: Survivors, nurses, and family physicians agreed that scps could ease the transition to survivorship partly by enhancing communication between survivors and care providers. Survivors appreciated the individualized attention and the comprehensiveness of the plans. They described positive emotional impacts, but wanted a way to ensure that their physicians received the scps. Nurses and physicians responded positively, but expressed concern about the time required to implement the plans. Suggestions for streamlining the process included providing survivors with scp templates in advance, auto-populating the templates for the nurses, and creating summary pages for physicians. CONCLUSIONS: The results suggest ways in which scps could help to improve the transition to cancer survivorship and provide starting points for larger feasibility studies.

Suppression, repressive-defensiveness, restraint, and distress in metastatic breast cancer: separable or inseparable constructs?

A longstanding hypothesis links affective and behavioral inhibition with cancer incidence and progression though it does not clarify psychometric distinctions among related constructs. We hypothesized that repressive-defensiveness, suppression, restraint, and distress would be separable factors in our sample of metastatic breast cancer patients. Our results support the discriminant validity of these constructs in our total sample, and the stability over 1 year in our control group. Using factor analysis, we found 4 separate factors at our prerandomization baseline corresponding closely to hypothesized constructs. Additionally, associations in a multi-trait, multi-occasion (baseline and 1 year) matrix met each of the 3 Campbell and Fiske (1959) criteria of convergent and discriminant validity. Future research testing the links between psychological, physiological, and survival outcomes with affective inhibition in cancer patients will be clearer when informed by these distinctions.

Supportive-expressive group therapy and distress in patients with metastatic breast cancer: a randomized clinical intervention trial.

BACKGROUND: Metastatic breast cancer carries with it considerable psychosocial morbidity. Studies have shown that some patients with metastatic breast cancer experience clinically significant anxiety and depression and traumatic stress symptoms. Supportive-expressive group psychotherapy was developed to help patients with cancer face and adjust to their existential concerns, express and manage disease-related emotions, increase social support, enhance relationships with family and physicians, and improve symptom control. METHODS: Of 125 women with metastatic breast cancer recruited into the study, 64 were randomized to the intervention and 61 to the control condition. Intervention women were offered 1 year of weekly supportive-expressive group therapy and educational materials. Control women received educational materials only. Participants were assessed at baseline and every 4 months during the first year. Data at baseline and from at least 1 assessment were collected from 102 participants during this 12-month period, and these participants compose the study population. RESULTS: Primary analyses based on all available data indicated that participants in the treatment condition showed a significantly greater decline in traumatic stress symptoms on the Impact of Event Scale (effect size, 0.25) compared with the control condition, but there was no difference in Profile of Mood States total mood disturbance. However, when the final assessment occurring within a year of death was removed, a secondary analysis showed a significantly greater decline in total mood disturbance (effect size, 0.25) and traumatic stress symptoms (effect size, 0.33) for the treatment condition compared with the control condition. CONCLUSION: Supportive-expressive therapy, with its emphasis on providing support and helping patients face and deal with their disease-related stress, can help reduce distress in patients with metastatic breast cancer.

Distress, coping, and social support among rural women recently diagnosed with primary breast cancer.

This study examined distress, coping, and group support among a sample of rural women who had been recently diagnosed with breast cancer. We recruited 100 women who had been diagnosed with primary breast cancer at one of two time points in their medical treatment: either within a window up to 3 months after their diagnosis of breast cancer, or within 6 months after completing medical treatment for breast cancer. Their mean age was 58.6 years (SD = 11.6), and 90% were of white/European American ethnicity. Women completed a battery of demographic and psychosocial measures prior to being randomized into a psychoeducational intervention study, and then again 3 months later at a follow-up assessment. The focus of this article is on the women's self-reported psychosocial status at baseline. Many of the women experienced considerable traumatic stress regarding their breast cancer. However, this distress was not reflected in a standard measure of mood disturbance that is frequently used in intervention research (the Profile of Mood States). The average woman considered her diagnosis of breast cancer to be among the four most stressful life events that she had ever experienced. Also, women on average reported a high level of helplessness/hopelessness in coping with their cancer. On average, women felt that they "often" (but not "very often") received instrumental assistance, emotional support, and informational support. Women varied considerably in which kind of social group provided them with the most support, with as many reporting that they found the greatest support in spiritual/church groups or within their family units as with breast or general cancer groups. These results suggest that among these rural women with breast cancer, distress with the diagnosis of breast cancer must be carefully assessed, as women who are highly distressed about their breast cancer may not report general mood disturbance. Furthermore, the kinds of groups that rural women with breast cancer experience as most supportive need to be identified so that psychosocial interventions can be matched to breast cancer patients' individual needs.

Quality of couples' relationship and adjustment to metastatic breast cancer.

This study examined mood disturbance among women with metastatic breast cancer in relationship to partnership status, relationship quality, and partner's coping and mood disturbance. These associations were examined within a total sample of 125 metastatic breast cancer patients and a subsample of 48 of these patients and their partners. Partnered and single women were indistinguishable in mood disturbance when household income was statistically controlled. Results also showed that patients were less distressed when they rated the relationship higher in Cohesion--Expression and in Conflict and when their partners reported lower mood disturbance. One possible implication of these results is that in relationships in which a woman has metastatic cancer, she may benefit from open engagement of difficulties and conflict. Furthermore, alleviating her distress may be better achieved by focus on the couple relationship rather than her individual coping.

Converging evidence for a cognitive anomaly in early psychopathology.

Subcomponents of the N200 component of the event-related brain potential believed to be differentially sensitive to involuntary and voluntary cognitive processes were examined. Nonpatients (N = 131) identified initially by the Chapman and Depue research scales and classified later on the basis of diagnostic symptom clusters and family psychiatric history provided converging evidence for an intact mismatch negativity subcomponent. In contrast, the N2b subcomponent distinguished several groups of subjects. Results suggested abnormal voluntary cognitive processing, perhaps reflecting compensatory efforts in subjects at risk for or manifesting psychopathology, particularly those showing negative symptoms.

Memory template comparison processes in anhedonia and dysthymia.

Anhedonic subjects, potentially at risk for psychopathology because of a deficient ability to experience pleasure, have demonstrated a large N200 component in the event-related brain potential (ERP). The present experiment attempted to determine the psychological significance of this finding in light of Näätänen's (1990) distinction between N2a and N2b subcomponents. Anhedonics were contrasted with controls and dysthymics, an at-risk group reporting depression. Across groups, N2a was larger when a tone mismatched a longer run of preceding identical tones. Thus, an involuntary mismatch process appears to be intact in both at-risk groups. However, the three groups produced distinct N2bs as a function of stimulus sequence. The N2b finding for anhedonics is consistent with Knight's (1984, 1992) model of early stimulus processing deficits in schizophrenia.