Objective
To identify the occurrence of late symptom effects among childhood cancer survivors (CCS), generate subgroups using a latent class analysis and determine whether the subgroups differ in ...demographic and health‐related characteristics and health‐promoting lifestyle.
Methods
A cross‐sectional survey was conducted on 130 adult CCS in Korea. The Memorial Symptom Assessment Scale was used to perform a latent class analysis based on symptom occurrence to generate subgroups.
Results
Difficulty in concentration, lack of energy, worrying, drowsiness, irritability, pain, difficulty in sleeping, nervousness, sadness and dry mouth appeared in more than 50% of the CCS. The three symptom subgroups identified were “all high” (46.2%), “high physical moderate psych” (26.9%) and “moderate physical low psych” (26.9%). The percentage of non‐smokers was the highest in the moderate physical low psych subgroup (85.7%; p = .009), and the percentage of heavy alcohol consumption was the highest in the high physical moderate psych subgroup (31.4%; p = .013). Spiritual growth scores and interpersonal relationship scores were statistically different between subgroups (F = 3.35, p = .038; F = 7.55, p = .001 respectively).
Conclusion
The results could guide the development of intervention programmes to strengthen spiritual growth and interpersonal relationships and facilitate further examination of the causal relationship between smoking and drinking and late symptoms of CCS.
Patient empowerment reflects the ability of patients to positively influence their health and health behavior such as physical activity. While interactive Web-based interventions are increasingly ...used in various chronic disease settings to enhance empowerment and physical activity, such interventions are still uncommon for cancer survivors.
The objective of this study was to systematically review the literature regarding interactive Web-based interventions. We focused on interventions aimed at increasing patient empowerment and physical activity for various chronic conditions, and explored their possible relevance for cancer survivors.
Searches were performed in PubMed, Embase, and Scopus to identify peer-reviewed papers reporting on randomized controlled trials that studied the effects of Web-based interventions. These interventions were developed for adults with diabetes, cardiovascular disease, chronic obstructive pulmonary disease, heart failure, or cancer. Intervention characteristics, effects on patient empowerment and physical activity, information on barriers to and facilitators of intervention use, users' experiences, and methodological quality were assessed. Results were summarized in a qualitative way. We used the recommendations of the Institute of Medicine (IOM) regarding cancer survivorship care to explore the relevance of the interventions for cancer survivors.
We included 19 papers reporting on trials with 18 unique studies. Significant, positive effects on patient empowerment were reported by 4 studies and 2 studies reported positive effects on physical activity. The remaining studies yielded mixed results or no significant group differences in these outcomes (ie, no change or improvement for all groups). Although the content, duration, and frequency of interventions varied considerably across studies, commonly used elements included education, self-monitoring, feedback/tailored information, self-management training, personal exercise program, and communication (eg, chat, email) with either health care providers or patients. Limited information was found on barriers, facilitators, and users' experiences. Methodological quality varied, with 13 studies being of moderate quality. The reported Web-based intervention elements appeared to be highly relevant to address the specific needs of cancer survivors as indicated by the IOM.
We identified 7 common elements of interactive, Web-based interventions in chronic disease settings that could possibly be translated into eHealth recommendations for cancer survivors. While further work is needed to determine optimal intervention characteristics, the work performed in other chronic disease settings provides a basis for the design of an interactive eHealth approach to improve patient empowerment and physical activity in cancer survivors. This may subsequently improve their health status and quality of life and reduce their need for supportive care.
The purpose of this study was to evaluate the preliminary efficacy and satisfaction/acceptability of training in memory or speed of processing versus wait-list control for improving cognitive ...function in breast cancer survivors. 82 breast cancer survivors completed a three-group randomized, controlled trial. Primary outcomes were objective neuropsychological tests of memory and speed of processing. Secondary outcomes were perceived cognitive functioning, symptom distress (mood disturbance, anxiety, and fatigue), quality of life, and intervention satisfaction/acceptability. Data were collected at baseline, post-intervention, and 2-month follow-up. Using repeated-measures mixed-linear ANCOVA models, each intervention was compared to wait-list control while adjusting for age, education, and baseline measures. The effect sizes for differences in means and the reliable improvement percentage were reported. The results show that domain-specific effects were seen for both interventions: memory training improved memory performance at 2-month follow-up (
p
= 0.036,
d
= 0.59); speed of processing training improved processing speed post-intervention (
p
= 0.040,
d
= 0.55) and 2-month follow-up (
p
= 0.016;
d
= 0.67). Transfer effects to non-trained domains were seen for speed of processing training with improved memory post-intervention (
p
= 0.007,
d
= 0.75) and 2-month follow-up (
p
= 0.004,
d
= 0.82). Both interventions were associated with improvements in perceived cognitive functioning, symptom distress, and quality of life. Ratings of satisfaction/acceptability were high for both interventions. It was concluded that while both interventions appeared promising, speed of processing training resulted in immediate and durable improvements in objective measures of processing speed and verbal memory. Speed of processing training may have broader benefits in this clinical population.
From guilt to shame Leys, Ruth; Leys, Ruth
2007., 20090110, 2009, 2007, 2007-01-01, Letnik:
8
eBook
Why has shame recently displaced guilt as a dominant emotional reference in the West? After the Holocaust, survivors often reported feeling guilty for living when so many others had died, and in the ...1960s psychoanalysts and psychiatrists in the United States helped make survivor guilt a defining feature of the "survivor syndrome." Yet the idea of survivor guilt has always caused trouble, largely because it appears to imply that, by unconsciously identifying with the perpetrator, victims psychically collude with power. In From Guilt to Shame, Ruth Leys has written the first genealogical-critical study of the vicissitudes of the concept of survivor guilt and the momentous but largely unrecognized significance of guilt's replacement by shame. Ultimately, Leys challenges the theoretical and empirical validity of the shame theory proposed by figures such as Silvan Tomkins, Eve Kosofsky Sedgwick, and Giorgio Agamben, demonstrating that while the notion of survivor guilt has depended on an intentionalist framework, shame theorists share a problematic commitment to interpreting the emotions, including shame, in antiintentionalist and materialist terms.
Financial toxicity (FT) is used to describe the financial distress/hardship associated with cancer and its treatment.
The aim of this review was to explore the relationship between FT and symptom ...burden.
A systematic review was performed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We searched MEDLINE, EMBASE, and CINAHL (from January 2000 to January 2018) and accepted quantitative, mixed-methods and qualitative studies. Data were extracted and appraised by two reviewers. Owing to significant heterogeneity in the included studies, a narrative synthesis was performed.
Nine studies involving 11,544 cancer survivors were included. Of these nine studies, eight were of high quality. The relationships between FT and psychological symptoms and physical symptoms were examined in eight and three studies, respectively. Six studies reported a positive relationship between FT and depression. Three studies found a positive association between FT and anxiety. Limited evidence was found for an association between FT and stress, fear of recurrence, spiritual suffering, pain, and overall symptom burden.
A relatively clear association exists between FT and psychological symptoms. Clinicians should regularly screen for, assess, and manage emotional distress that may be attributed to FT. Although the causal pathway is not known, future intervention studies aimed at minimizing or preventing FT should evaluate psychological symptoms as secondary outcomes. Little is known about the relationships between FT and physical symptoms. Future research should overcome methodological limitations by incorporating longitudinal data collection, use of mixed-methods approaches, and homogeneity of samples.
Background
Medical financial burden includes material, behavioral, and psychological hardship and has been underinvestigated among adult survivors of childhood cancer.
Methods
A survey from 698 ...survivors and 210 siblings from the Childhood Cancer Survivor Study was analyzed. The intensity of financial hardship was estimated across 3 domains: 1) material, including conditions that arise from medical expenses; 2) behavioral, including coping behaviors to manage medical expenses; and 3) psychological hardship resulting from worries about medical expenses and insurance, as measured by the number of instances of each type of financial hardship (0, 1‐2, and ≥3 instances). Multivariable logistic regressions were conducted to examine the clinical and sociodemographic predictors of experiencing financial hardship (0‐2 vs ≥3 instances).
Results
The intensity of financial hardship did not significantly differ between survivors and siblings. Survivors reported more instances of material hardship than siblings (1‐2 instances: 27.2% of survivors vs 22.6% of siblings; ≥3 instances: 15.9% of survivors vs 11.4% siblings; overall P = .03). In multivariable regressions, insurance was protective against all domains of financial hardship (behavioral odds ratio OR, 0.12; 95% confidence interval CI, 0.06‐0.22; material OR, 0.37; 95% CI, 0.19‐0.71; psychological OR, 0.10; 95% CI, 0.05‐0.21). Survivors who were older at diagnosis, female, and with chronic health conditions generally had higher levels of hardship. Brain radiation and alkylating agents were associated with higher levels of hardship.
Conclusions
Material, behavioral, and psychological financial burden among survivors of childhood cancer is common.
Survivors of childhood cancer are at risk for economic consequences of their cancer treatment that manifest through the domains of material, behavioral, and psychological hardship. A high intensity of medical financial hardship is common among survivors of long‐term childhood cancer.
Objective: We conducted a meta-analysis of physical activity interventions among cancer survivors to (a) quantify the magnitude of intervention effects on physical activity and (b) determine what ...combination of intervention strategies maximizes behavior change. Method: Out of 32,626 records that were located using computerized searches, 138 independent tests (N = 13,050) met the inclusion criteria for the review. We developed a bespoke taxonomy of 34 categories of techniques designed to promote psychological change, and categorized sample, intervention, and methodological characteristics. Random effects meta-analysis and metaregressions were conducted; effect size data were also submitted to meta-analysis with classification and regression trees (i.e., meta-CART). Results: The sample-weighted average effect size for physical activity interventions was d+ = .35, equivalent to an increase of 1,149 steps per day. Effect sizes exhibited both publication bias and small sample bias but remained significantly different from zero, albeit of smaller magnitude (d+ ≥ .20), after correction for bias. Meta-CART indicated that the major difference in effectiveness was attributable to supervised versus unsupervised programs (d+ = .49 vs. .26). Greater contact time was associated with larger effects in supervised programs. For unsupervised programs, establishing outcome expectations, greater contact time, and targeting overweight or sedentary participants each predicted greater program effectiveness, whereas prompting barrier identification and providing workbooks were associated with smaller effect sizes. Conclusion: The present review indicates that interventions have a small but significant effect on physical activity among cancer survivors and offers insights into how the effectiveness of future interventions might be improved.
The Brief Symptom Inventory-18 (BSI-18) is widely used to assess psychological symptoms in cancer survivors, but the validity of conventional BSI-18 cut-off scores in this population has been ...questioned. This study assessed the accuracy of the BSI-18 for identifying significant anxiety and depression in young adult cancer survivors (YACS), by comparing it with a "gold standard" diagnostic interview measure. Two hundred fifty YACS, age 18-40 completed the BSI-18 and the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders (DSM-IV; SCID) interview assessing anxiety and depressive disorders. BSI-18 results were compared with SCID criteria using receiver operating characteristics (ROC) analyses. Forty four participants (17.7%) met criteria for ≥1 SCID diagnoses, and an additional 20 (8.0%) met criteria for clinically significant SCID symptoms without a diagnosis. General concordance between the BSI-18 GSI scale and SCID diagnosis was good (AUC = 0.848), but the 2 most widely used BSI-18 case rules failed to identify a majority of survivors with SCID diagnoses, and no alternative BSI-18 cut-off scores met study criteria for clinical screening. Analyses aimed at identifying survivors with significant SCID symptoms or a SCID diagnosis had similar results, as did analyses examining depression and anxiety separately. The BSI-18 shows good overall concordance with a psychiatric interview, but recommended cut-off scores fail to identify a majority of YACS with psychiatric diagnosis. Clinicians should not rely on the BSI-18 alone as a screening measure for YACS. Alternative BSI-18 scoring algorithms optimized for detecting psychiatric symptoms in YACS may be an important step to address this limitation.
Public Significance Statement
The Brief Symptom Inventory-18 (BSI-18) is a Self-Report Checklist measure that has been widely used to assess psychological symptoms in young adult cancer survivors (YACS). In this study, results of the BSI-18 did not reliably identify YACS diagnosed with a psychiatric disorder using an in-person interview. These results suggest that using the BSI-18 alone does not provide an accurate assessment of psychological functioning in this cancer survivor population.
Due to the increasing number of long-term (≥5 years post diagnosis) colorectal cancer survivors, long-term quality of life of these patients is highly relevant. Several studies have reported a ...positive association between physical activity and quality of life in colorectal cancer survivors, however, so far no systematic review has been published which focuses on long-term colorectal cancer survivors.
A systematic review was conducted using the databases PubMed, Web of Science, PsychINFO, and CINAHL. Studies which investigated associations between physical activity and quality of life in long-term colorectal cancer survivors were included.
Ten articles based on seven studies were identified. Long-term colorectal cancer survivors who were physically active reported better quality of life than long-term survivors who were not physically active. Both, moderate to vigorous physical activity and lower levels like light physical activity were associated with higher quality of life. Most studies assessed the association between physical activity and quality of life cross-sectionally but one prospective study which measured physical activity and quality of life at three different points in time also found associations between physical activity and quality of life. The association between physical activity and quality of life seemed to be stronger among women than among men. The findings of this systematic review support an association between physical activity and quality of life in long-term colorectal cancer survivors. However, the evidence is limited as most studies were based on cross-sectional and observational design.
Objective
Young adult (YA) cancer survivors who received gonadotoxic therapy are at risk for impaired fertility and/or childbearing difficulties. This study explored the experiences and financial ...concerns of survivors pursuing family building through assisted reproductive technology (ART) and adoption.
Methods
Retrospective study of data collected from grant applications for financial assistance with family building. Grounded theory methodology using an inductive data‐driven approach guided qualitative data analysis.
Results
Participants (N = 46) averaged 32 years old (SD = 3.4) were primarily female (81%) and married/partnered (83%). Four main themes were identified representing the (1) emotional experiences and (2) financial barriers to family building after cancer, (3) perceived impact on partners, and (4) disrupted life trajectory. Negative emotions were pervasive but were balanced with hope and optimism that parenthood would be achieved. Still, the combination of high ART/adoption costs, the financial impact of cancer, and limited sources for support caused extreme financial stress. Further, in the face of these high costs, many survivors reported worry and guilt about burdening partners, particularly as couples failed to meet personal and societal expectations for parenthood timelines.
Conclusion
After cancer, YAs face numerous psychosocial and financial difficulties in their pursuits of family building when ART/adoption is needed to achieve parenthood. Survivors interested in future children may benefit from follow‐up fertility counseling post‐treatment including discussion of ART options, surrogacy, and adoption, as appropriate, and potential barriers. Planning for the financial cost and burden in particular may help to avoid or mitigate financial stress later on.
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