Evaluation of the Fertility and Cancer Project (FCP) among young breast cancer survivors

Objective: Fertility and childbearing issues are the major quality of life concerns among young breast cancer survivors. Practical approaches are needed to convey reproductive health information. The Fertility and Cancer Project (FCP) is a dedicated research project that provides online reproductive health and fertility education. We report FCP participants' (a) changes in mood and functioning and (b) changes in knowledge of fertility and cancer from baseline to 6‐month follow‐up. Methods: Participants completed five self‐report baseline measures, accessed FCP content and participated in online discussions. At 6 months post FCP study entry, participants were asked to complete follow‐up self‐reports. Results: One hundred and six breast cancer survivors from 8 countries participated in the FCP. Mean age at diagnosis was 34.3 years; mean time since diagnosis was 22 months. Significant change was detected in improved physical functioning (p=0.019) and social functioning (p=0.02). Significant changes were also noted in improved fertility knowledge (p=0.011). Conclusion: Preliminary evidence shows that young breast cancer survivors derive improved mood and knowledge benefit from FCP participation. Internet‐based approach may be a viable format for engaging this population of cancer survivors. Copyright © 2009 John Wiley & Sons, Ltd.     

Fear of recurrence in long-term testicular cancer survivors

Objective: To explore fear of recurrence (FoR) in long‐term testicular cancer survivors (TCSs) since FoR hardly has been examined in TCSs. Methods: In a cross‐sectional questionnaire study, 1336 TCSs at a mean of 11.4 years (SD 4.2) after diagnosis gave information about their medical and social situation, and completed measures on mental distress, fatigue, quality of life, coping, self‐esteem and neuroticism. FoR during the last week was explored with one question, with the response categories rated on a 4‐point Likert scale. Nine percent of the TCSs had a structured psychiatric interview. Results: Twenty‐four percent of the TCSs reported ‘quite a bit’ FoR and 7% reported ‘very much’ FoR during the last week. The FoR question showed moderate correlations (0.22–0.51) with established psychological measures. The level of FoR was significantly positively correlated with mental distress, fatigue and neuroticism and significantly negatively correlated with quality of life, self‐esteem and coping. In univariate analyses, neurotoxic side effects and somatic symptoms, but not treatment modality, were significantly associated with level of FoR. In a multivariate analysis, a medium educational level, increasing levels of traumatic cancer‐related stress symptoms and of neuroticism were significantly associated with rising FoR. Among those who had a psychiatric interview, the presence of at least one current mental disorder was significantly associated with FoR. Conclusions: High levels of FoR in long‐term TCSs are not uncommon. Levels of mental and somatic problems are associated with the levels of FoR. Clinical consequences of these findings for TCSs are discussed. Copyright © 2008 John Wiley & Sons, Ltd.     

Exercise and relaxation intervention for breast cancer survivors: feasibility, acceptability and effects

Objective: Although evidence mounts regarding the beneficial effects of physical activity (PA) interventions for breast cancer survivors, not all interventions have produced significant improvement in mood. Relaxation training may be a promising strategy for enhancing mood effects from these interventions. The goals of Be Calm and Move On were to assess the feasibility, acceptability and preliminary effects of a 12‐week combined PA and relaxation intervention for breast cancer survivors. Methods: Twenty‐three early‐stage breast cancer survivors were enrolled and 19 were retained for the intervention and 12‐ and 24‐week follow‐ups. Participants received a theoretically grounded intervention delivered via telephone. Results: Participant evaluations of the intervention indicated that it was feasible and acceptable (e.g. 100% would recommend it to others); objective data further supported its feasibility (e.g. 83% completed the trial, 91% of intervention calls were received). In addition, when comparing 12‐ and 24‐week follow‐up data to baseline data, participants demonstrated significantly increased PA, improved mood and sleep quality, and reduced fatigue (p's<0.05). Conclusion: Thus, this pilot study suggests that the intervention is feasible and acceptable and produces promising effects on mood, sleep, and fatigue. Copyright © 2008 John Wiley & Sons, Ltd.     

Fear of movement in cancer survivors: validation of the modified Tampa scale of kinesiophobia-fatigue

Objective: To date, there is no validated questionnaire to assess fear of movement in cancer survivors. We aim to validate the Modified Tampa Scale of Kinesiophobia‐Fatigue (TSK‐F) in Dutch cancer survivors participating in a rehabilitation programme. We first select the optimal model for cancer survivors. Subsequently, stability, internal consistency, and construct validity of the optimal model is tested. Methods: A sample of 658 cancer survivors participating in a rehabilitation programme was included. Out of nine models derived in chronic pain and chronic fatigue patients, the optimal model of the TSK‐F was selected in a calibration sample (n₁ = 329) using confirmatory factor analysis. Stability of the derived optimal model was confirmed in a validation sample (n₂ = 329). Internal consistency and construct validity were assessed in the full sample. Results: The 11‐item two‐factor model of the TSK‐F was the best‐fitting model for cancer survivors and it seemed to be invariant for sex and cancer diagnosis. Internal consistency of the model was acceptable (Cronbach's alpha between 0.62 and 0.74). Construct validity was illustrated by significant associations between TSK‐F total and TSK‐F somatic focus with perceived global health status (EORTC‐QOL‐C30) and fatigue (FACT‐F) (p<0.001). Conclusions: The adjusted 11‐item TSK‐F consisting of two subscales ‘somatic focus’ and ‘activity avoidance’ seems to be a robust and valid tool in measuring fear of movement in cancer survivors with an acceptable internal consistency. Further psychometric testing of the TSK‐F in cancer survivors is recommended. In the future, TSK‐F scores may be used to customise rehabilitation programmes in cancer survivors.Copyright © 2011 John Wiley & Sons, Ltd.     

Sources of meaning in cancer patients – influences on global meaning,anxiety and depression in a longitudinal study

Although existential needs are highly prevalent in patients with cancer, specific sources of meaning have been little explored. We investigated whether specific sources of meaning predict global meaning and psychological distress. N = 258 patients with breast (45%), lung (39%) and gynaecological cancer (16%) completed a battery of validated questionnaires at T1. Six months later (T2), n = 183 (78%) patients participated again. The primary outcomes – sources of meaning, global meaning and psychosocial distress – were measured with the Sources of Meaning Profile‐Revised (SOMP‐R), Life Attitude Profile‐Revised (LAP‐R) and modules for depression and anxiety of the Patient Health Questionnaire (PHQ‐9, GAD‐7). Most important sources of meaning were ‘engaging in personal relationships’, ‘preserving human values and ideals’ and ‘feeling financially secure’. Stepwise multivariate regression analyses controlling for demographic and medical factors revealed that ‘engaging in personal relationships’, ‘preservation of culture and tradition’ and ‘interest in social and/or political causes’ predicted lower depression. ‘Leaving a legacy for the next generation’ and ‘feeling financially secure’ predicted both higher depression and anxiety. The findings highlight the relevance of sources of meaning for the psychological well‐being of cancer patients and point towards specific sources of meaning that should be focused in psychosocial interventions.     

Coexistence of urinary incontinence and major depressive disorder with health-related quality of life in older Americans with and without cancer

Purpose

This study evaluates the prevalence and factors associated with major depressive disorder (MDD) in a population of cancer survivors and the impact of co-occurring MDD and urinary incontinence (UI) on health-related quality of life (HRQOL).

Methods

The prevalence of MDD risk among cancer survivors (breast, prostate, bladder, colorectal, lung, and endometrial/uterine cancers) and those without cancer was estimated using the Surveillance, Epidemiology and End Results Program-Medicare Health Outcomes Survey (SEER-MHOS) linked database (n?=?9,282 with cancer/n?=?289,744 without cancer). Risk for MDD was measured using three items from the Diagnostic Interview Schedule, and HRQOL was measured by the SF-36. UI was defined as self-reported leakage of urine causing a problem in previous 6 months. Factors associated with MDD were investigated using logistic regression, and the impact of co-occurring MDD and UI on HRQOL scores was determined using linear regression.

Results

The prevalence of MDD risk ranged from 19.2 % for prostate to 34.1 % for lung. Lung cancer diagnosis was associated with risk of MDD. Being ≥5 years from diagnosis was associated with decreased risk of MDD (prevalence odds ratio (POR)?=?0.82, 95 % confidence interval (95 % CI) 0.71, 0.95). The coexistence of both UI and MDD was associated with a decrease across HRQOL subscales; including 40 points on role-emotional (RE) score.

Conclusions

Cancer survivors reporting co-occurrence of UI and MDD experienced significant decrements in HRQOL.

Implications of Cancer Survivors

Understanding the combined effect of UI and MDD may help clinicians to better recognize and alleviate their effects on cancer survivors’ HRQOL.     

Psychiatric morbidity and its screening in Turkish women with breast cancer: a comparison between the HADS and SCID tests

Objective: Adjustment disorders (ADs) and major depressive disorder (MDD) are often the most prevalent psychiatric disorders among cancer patients. This study's objective was to determine the overall performance of Hospital Anxiety and Depression Scale (HADS) as a screening instrument in identifying cases of psychiatric morbidity such as ADs and MDD. Methods: Two hundred and four consecutive patients completed a questionnaire including a demographic and clinical data form, HADS, and were examined with the Structured Clinical Interview for DSM‐IV (SCID). The screening performance of HADS was investigated by calculating the area under the receiver operating characteristics curves (AUC), rates of specificity, and sensitivity. Results: For MDD; the AUC was 0.77 on the HADS total, the AUC was 0.79 on the HADS depression subscale, and was 0.72 on the anxiety subscale. For ADs; the results were 0.74, 0.74, and 0.70 respectively. Findings indicated that a HADS total cut‐off score of ?17 to be optimal in identifying cases of MDD. This cut‐off score offered a sensitivity of 0.70 and a specificity of 0.80. Findings suggested that a HADS total cut‐off score of 10 was the optimal combination of sensitivity (0.84) and specificity (0.55) for ADs. When compared with SCID, the percentage of cases identified by HADS was 28% for MDD and 22% for ADs. Conclusions: Compared with SCID, HADS was found to have acceptable levels of sensitivity and specificity in detecting psychiatric morbidity especially for MDD and HADS can be recommended with reservations as a screening tool for breast cancer patients. Copyright © 2007 John Wiley & Sons, Ltd.     

Worse quality of life in young and recently diagnosed breast cancer survivors compared with female survivors of other cancers: A cross‐sectional study

Literature focusing on health‐related quality of life (HRQoL) by cancer site among women only is scarce. This study examines HRQoL of breast cancer (BC) survivors compared with female survivors of other cancers, and to understand which subgroups of BC survivors were particularly at risk of reduced HRQoL. We placed emphasis on young (<50 years) and recently diagnosed (≤5 years) survivors, where the deficits in HRQoL were most pronounced. The cross‐sectional study consisted of 2,224 BC survivors, 8,504 non‐cancer controls and 2,205 other cancer survivors in the Karma study. We examined HRQoL differences using linear regression analyses in the whole cohort and in a subset of young and recently diagnosed BC survivors (n = 242) and female survivors of other cancers (n = 140) with comparable ages at diagnosis (43.6 vs 43.6, p = 0.917) and time since diagnosis (2.3 vs 2.8 years, p < 0.001). HRQoL was assessed using the EORTC QLQ‐C30 questionnaire. While only cognitive functioning was significantly compromised in BC survivors compared with survivors of other cancers when women of all ages were included, young BC survivors reported significantly lower HRQoL on multiple functional scales (global quality of life, emotional, role, social and cognitive functioning) and experienced more fatigue and insomnia. BC survivors with any prior medical history of mental disorders reported poorer HRQoL than those without such a history. We also observed a close–knit relationship between tumor and treatment characteristics. BC survivors perform poorly in HRQoL in comparison with female survivors of other cancers. Our results emphasize the importance of age‐ and gender‐appropriate comparison groups.     

Development of the Psycho-social Discomfort Scale (PsDS): investigation of psychometric properties among Japanese breast cancer survivors

Objective: To develop a new scale to assess psycho‐social discomfort in breast cancer (BC) survivors in Japanese society and to investigate its psychometric properties. Method: A total of 248 Japanese BC survivors completed both the Psycho‐social Discomfort Scale (PsDS) and WHO Quality of Life BREF Japanese version (WHO QoL‐Jp). A principal component factor analysis (with promax rotation) was performed, and internal consistency was examined using Cronbach's alpha. Divergent and convergent validities and criterion validity were examined using the Spearman's R. Results: The factor analysis extracted three factors: ‘internalised stigma (IS)’, ‘social disclosure of BC (SD)’, and ‘psychological resources to live with BC (PR)’. The factors were moderately correlated. The scale had good internal consistency (alpha = 0.80). All sub‐scales were inversely correlated with all the domains in the WHO QoL‐Jp (r = ?0.09 to ?0.47). BC stage was significantly correlated with the SD sub‐scale, and type of surgery was significantly correlated with the IS sub‐scale. Conclusions: The PsDS has 25 items. It measures psycho‐social discomfort that Japanese BC survivors experienced or were experiencing in their community. It has a simple factor structure, relatively good internal consistency, and a satisfactory divergent validity. Copyright © 2010 John Wiley & Sons, Ltd.     

Psychological response to cancer diagnosis and disease outcome in patients with breast cancer and lymphoma

The relationship between psychological response (PRD) to cancer diagnosis measured three months post-diagnosis and disease outcome up to five years later was studied prospectively in a consecutive series of 107 women with early (T_{0 – 2}, N_{0 – 1}, M₀) breast cancer and a consecutive series of 61 men and women with Hodgkin's and Non-Hodgkin's lymphoma. It was only possible to assign 138 patients (88 breast cancer and 50 lymphoma) to single psychological response categories. In those who could be so categorised a significant trend of worsening prognosis as response varied from ‘fighting spirit’ or ‘denial’ through ‘anxious preoccupation’ to ‘stoic acceptance’ or ‘hopelessness/helplessness’, was demonstrated for both overall survival (χ² = 5.49; p = 0.02) and recurrence-free survival (χ² = 6.09; p = 0.015). Male lymphoma patients who had died by five years tended to have higher scores on the suppression of anger scales of the Courtauld Emotional Control Scale and the‘Powerful Others Scale’ of the Mental Health Locus of Control Scale; they more often reported avoiding seeking information or‘keeping busy’ as a way of avoiding thinking about their diagnosis. The relative values of psychological test scores and semi-structured interview data in the study are discussed.     

Psychological distress related to patterns of family functioning among Japanese childhood cancer survivors and their parents

Objective: Family functioning appears to be a predictor of psychological distress among childhood cancer survivors and their family members; however, relatively little is known about patterns in those families that are psychologically at‐risk. The purpose of this study was to identify distinct clusters of families that include childhood cancer survivors, and to evaluate differences between the clusters with respect to anxiety, depression, and post‐traumatic stress symptoms (PTSS). Methods: Childhood cancer survivors and their parents (247 individuals: 88 adolescent cancer survivors, 87 mothers, and 72 fathers) completed self‐report questionnaires. Perceptions of family functioning were assessed using the Family Relationship Index and its three dimensions (cohesiveness, expressiveness, and conflict), and individuals were classified into groups via a cluster analytic approach. State‐trait anxiety, depression, and PTSS were assessed to all of the participants. Results: The individuals were classified into three types: One cluster featured high cohesiveness, high expressiveness, and low conflict (‘Supportive‐type’, n=102); a second cluster featured low cohesiveness, low expressiveness, and high conflict (‘Conflictive‐type’, n=32); and a third cluster had moderate cohesiveness, moderate expressiveness, and moderate conflict (‘Intermediate‐type’, n=113). Among the three types, an analysis of variance revealed that ‘Conflictive‐type’ members had the highest levels of PTSS, depression, and state–trait anxiety. Conclusions: These findings suggest that perceptions of family functioning are related to psychological distress in family members of childhood cancer survivors. A family‐focused intervention might be a useful approach to targeting emotional distress in these families, particularly for families with a ‘Conflictive‐type’ family member. Copyright © 2009 John Wiley & Sons, Ltd.     

Common‐sense beliefs about cancer and health practices among women completing treatment for breast cancer

Objective: Following the end of adjuvant treatment, breast cancer survivors must cope with uncertainty related to the possibility of recurrence and the loss of the ‘safety net’ treatment provides. This study examined breast cancer survivors' efforts to manage uncertainty by making lifestyle changes, such as improvement in diet and exercise. We further investigated the role of women's common‐sense beliefs about their cancer, as described by Leventhal's self‐regulation theory, in explaining post‐treatment changes. Method: At 3 weeks and 3 months post‐treatment, 79 women who received adjuvant chemotherapy and/or radiation therapy for stages 0–III breast cancer (mean age=55 years) completed assessments of changes in health practices and other behaviors. Participants also completed measures of beliefs about the causes, course, personal control, and consequences of their cancer. Results: Survivors reported behavior changes directed toward improving physical, emotional, and spiritual well‐being. Results further indicated that women who believed their cancer had more severe consequences and those who attributed the development of cancer or the prevention of recurrence to health behaviors or stress were most likely to report improvement in diet or physical activity and reduction in alcohol use or stress. Conclusions: Findings suggest that breast cancer survivors are poised to make lifestyle changes after treatment ends, creating an opportune time for health promotion interventions. Understanding women's cancer beliefs could help guide the development of tailored, proactive interventions to improve the health and well‐being of breast cancer survivors. Copyright © 2010 John Wiley & Sons, Ltd.     

Did quality of life for older cancer survivors improve with the turn of the century in the United States?

ObjectivesAlthough survival after a cancer diagnosis has improved considerably over the past 20 years, little is known about trends in health-related quality-of-life (HRQOL) for older prostate, breast, and lung cancer survivors.MethodsUsing a population-based registry with longitudinal patient reported outcomes (the National Cancer Institute Surveillance, Epidemiology and End Results database linked to Medicare Health Outcomes Survey), we analyzed Medicare Advantage patients diagnosed with cancer during 1998–2011, who completed surveys regarding HRQOL through 2013. ‘Early Era’ patients were treated during 1998–2003; ‘Late Era’ patients were treated during 2006–2011. After propensity score matching, post-diagnosis changes in health utility (HU), Physical Component Summary (PCS) and Mental Component Summary (MCS) scores were calculated and compared between the two eras.ResultWe identified 208 older patients with prostate, 276 with breast and 76 with lung cancer who were treated in the ‘Early Era’ and matched to equal numbers in the ‘Late Era’. Mean age of patients in early and late era was 72 and 73 years, respectively. The mean post-diagnosis decline in health utility for patients treated in the ‘Late Era’ was not significantly different from the ‘Early Era’ for any cancer (Prostate [early vs. late]: ?0.06 vs. -0.03, p = .09; Breast: ?0.03 vs. ?0.04, p = .65; Lung: ?0.07 vs. ?0.07, p = .95); nor for Physical Component Summary or Mental Component Summary scores.ConclusionOlder patients treated for prostate, breast or lung cancer in the later era reported similar outcomes of changes in HRQOL compared to earlier era patients.     

Late psychiatric morbidity in survivors of cancer at a young age: A nationwide registry‐based study

Childhood cancer survivors have been shown to be prone to psychosocial adverse outcomes. Data on young adults and their psychiatric late effects are still scarce. In a nationwide, registry‐based study, we explored the risk (HR) of new psychiatric diagnoses in 5‐year survivors of childhood and young adulthood (YA) cancer (n = 13,860) compared with a sibling cohort (n = 43,392). Hazard ratios (HRs) were calculated using Cox regression models. Patients and siblings were identified from the Finnish Cancer Registry and Central Population Registry, respectively. Outcome diagnoses were retrieved from the national hospital discharge register. The risk of organic memory/brain disorders was significantly increased in both childhood (HR 4.9; 95%CI 2.7–8.9) and YA (HR 2.1; 95%CI 1.4–3.1) cancer survivors compared with siblings. Mood disorders were also more common in childhood (HR 1.3; 95%CI 1.1–1.7) and YA survivors (1.3; 95%CI 1.1–1.5) than in siblings. Radiotherapy did not explain the differences. Female childhood cancer survivors had significantly increased HRs for mood disorders, psychotic disorders, neurotic/anxiety disorders, somatization/eating disorders and personality disorders. In survivors of YA cancers, females had significantly increased HR for neurotic/anxiety disorders, and the difference between female survivors and siblings was significantly (p < 0.05) higher than that between male survivors and male siblings. The effect of treatment era was also analyzed, and the risk of organic memory and brain disorders in childhood cancer survivors did not diminish over time. Despite the trend of decreased use of cranial irradiation in children, the risk of organic memory/brain disorders was elevated, even during the most recent era. Thus, additional research on chemotherapy‐only protocols and their impact on mental health, is warranted.     

Breast cancer in young families: a qualitative interview study of fathers and their role and communication with their children following the diagnosis of maternal breast cancer

Objective: To explore father–child communication following the diagnosis of maternal breast cancer, examine disparities in their understandings of the impact of the illness, and identify gaps in their need for support and information. Methods: The design is the qualitative interview study with thematic analysis. The interviews were home‐based with fathers and children in Oxfordshire, UK. The participants were 26 fathers whose partners had early breast cancer and 31 of their children aged between 6 and 18 years. Results: Fathers described graphically their reaction to news of their partner's breast cancer and their attempts to provide support for their partners and maintain normal family life for their children. Fathers were keen to reassure and protect children but often said that they lacked sufficient information about breast cancer—especially side effects of treatments. Fathers sometimes did not recognise the extent of their children's distress and some interpreted their children's reactions as ‘bad behaviour’ or ‘rudeness’. Children were often acutely aware of the father's emotional state, and expressed a wish to protect him. Some fathers would have liked an opportunity to talk to a clinician directly about the children but did not want to claim clinical time for themselves or their children. Conclusion: This study suggests that clinicians could improve their care of breast cancer patients by being more family‐centred. Fathers routinely need more information and preparation about the likely impact of the illness and its treatment (especially side effects) on the mother, and how children of different ages may react to the emotional strain. Clinicians need to be prepared to offer to talk to teenagers. Copyright © 2008 John Wiley & Sons, Ltd.     

Measuring social activities and social function in long‐term cancer survivors who received hematopoietic stem cell transplantation

Objective: Cancer survivors report deficits in social functioning even years after completing treatment. Commonly used measures of social functioning provide incomplete understanding of survivors' social behavior. This study describes social activities of survivors and evaluates the psychometric properties of the Social Activity Log (SAL) in a cohort of long‐term survivors of hematopoietic stem cell transplantation (HSCT) for cancer. Methods: One hundred and two (5–20 year) survivors completed the SAL, Short‐Form‐36 Health Survey (SF‐36), and other patient‐reported outcomes. Principal components analysis determined the factor structure of the SAL along with correlations and regressions to establish validity. Results: Principal component analysis yielded three factors in the SAL: ‘non‐contact events’ (e.g. telephone calls), ‘regular events’ (e.g. played cards), and ‘special events’ (e.g. concerts), which explained 59% of the total variance. The SAL possessed good internal consistency (Cronbach's α=0.82). SF‐36 social function and SAL were moderately correlated (r=0.31). In linear regressions, physical function and depression explained 16% of the variance in the SAL (P<0.001), while physical function, depression, and fatigue predicted 55% of the variance in SF‐36 social function (P<0.001). Conclusions: Results support the use of the SAL as a measure of social activity in cancer survivors who received HSCT. Although the SAL is designed to measure social behaviors, SF‐36 social function assesses subjective experience and is more strongly associated with depression and fatigue. The SAL appears to be a promising tool to understand the behavioral social deficits reported by long‐term survivors of cancer. Copyright © 2009 John Wiley & Sons, Ltd.