Measuring the impact of cancer: a comparison of non-Hodgkin lymphoma and breast cancer survivors

Introduction  

Self-report instruments such as the Impact of Cancer (IOC) are designed to measure quality of life (QOL) impacts that cancer survivors attribute to their cancer experience. Generalizability of QOL findings across distinct diagnostic categories of survivors is untested. We compare measurement of the impact of cancer using the IOC instrument in breast cancer (BC) survivors (n = 1,188) and non-Hodgkin lymphoma (NHL) survivors (n = 652).     

Self-reported global function among adult survivors of childhood lower-extremity bone tumors: a report from the Childhood Cancer Survivor Study (CCSS)

Introduction  Adult survivors of childhood lower-extremity bone tumors may experience physical and psychosocial late effects that impact physical performance, global function and quality of life. The identification of survivors at greatest risk for poor outcomes will inform potential intervention targets. Methods  Study participants were selected from the Childhood Cancer Survivor Study (CCSS), a multi-institutional study of childhood cancer survivors. Adult survivors (n = 629) of either childhood onset osteosarcoma or Ewing’s sarcoma, with a primary tumor location in the lower-extremity were identified and contacted via mail to complete an additional questionnaire. Participants completed the Reintegration into Normal Living Index (RNL) to evaluate global function (maximum score of 22), daily function (maximum score of 16) and self perception (maximum score of 6). Results  Survivors reported high levels of global function with an adjusted mean overall RNL index score of 20.6 (SE 0.14), mean daily function score of 15.0 (SD 0.10) and mean self perception score of 5.6 (SE 0.05). While female gender and increasing age were associated with lower RNL scores, the magnitude of difference is of questionable clinical significance. Global function was only moderately correlated with physical performance (r = 0.56) and QOL (r = 0.59). Discussion  Based upon the RNL index, the vast majority of long-term survivors of childhood lower extremity bone tumors adapt well to their environment. Implications for cancer survivors  While some long-term survivors of lower-extremity bone tumors may report measurable limitations in physical performance and quality of life, the majority do not report moderate or severe difficulties with social integration. This work was supported by grant CA 55727 (LL Robison, Principal Investigator), National Cancer Institute, Bethesda, MD, with additional support provided to St. Jude Children’s Research Hospital by the American Lebanese Syrian Associated Charities (ALSAC), to the University of Minnesota by the Children’s Cancer Research Fund and to R Nagarajan by the National Childhood Cancer Foundation, Arcadia, CA (Research Fellowship) and the American Society of Clinical Oncology, Alexandria, VA (Young Investigator Award)     

Addressing the needs of young breast cancer survivors at the 5 year milestone: can a short-term, low intensity intervention produce change?

Background  Today, the 5-year relative survival rate for cancer is 65% and there are 10.5 million survivors. The largest group of survivors are those of breast cancer. Reductions in mortality are occurring at a greater rate for women under age 50 at diagnosis than among older women. Aims  Our goal was to design a socio-educational intervention for 5-year survivors aged 50 or younger at diagnosis and test the hypotheses that women in the intervention group would show greater improvement than controls with respect to (1) knowledge of breast cancer, its treatment, and long-term health concerns; (2) lifestyle habits (i.e., exercise and diet); and (3) communication with family and physicians. Methods  Using a randomized controlled trial with a pre-post design, 404 women who were 5 years from diagnosis and cancer-free (response rate 54%) were randomly assigned to an intervention or delayed intervention (control) group and were assessed at pre-test (baseline) and 6 months later (96% retention). The intervention consisted of three 6-h workshops over a 3 month period. Four series of workshops were held at different geographical areas in the greater San Francisco Bay Area. The workshops included activities and information to promote physical, social, emotional, and spiritual well-being. The intervention design was based on findings from focus groups and a survey of 185 cancer-free 5-year survivors that assessed changes since the early months after diagnosis in physical, social, emotional, and spiritual concerns (response rate 73%). Results  Consistent with our first hypothesis, at post-test, women in the intervention group, on average, had greater knowledge regarding breast cancer, its treatment, and their own future health than did those in the control group (p = 0.015). Hypothesis 2 was partially supported as women in the intervention group were more likely than the control group to report an increased amount of physical activity (p = 0.036), but not significant dietary changes. Social support was related to increased self report of physical activity. With the exception of the last series of workshops, the intervention group did not report improved communications with family, friends, and physicians (hypothesis 3). Conclusions  A short-term intervention can affect knowledge levels and physical activity but not diet or communication in the family. Implications for Cancer Survivors  The intervention was related to greater knowledge related to breast cancer, and increased report of physical activity. The program was not related to changes in reported diet or family communication. The study was funded by the NIH, NCI R01-CA 078951. The authors gratefully acknowledge the contributions of Ingrid Oakley-Girvan, Ph.D., Merrilee Morrow, Ingrid Peterson, M.P.H., Subo Chang, M.S. and Monica Johnston, M.S.     

Changes in quality of life among breast cancer patients three years post-diagnosis

Objectives To evaluate changes in quality of life (QOL) and identify medical and socio-demographic predictors of QOL among breast cancer survivors 3 years after diagnosis. Methods Between April 2002 and March 2004 2,232 women with breast cancer were recruited into the Shanghai Breast Cancer Survival Study, a population-based cohort study, approximately 6 months after cancer diagnosis. QOL was evaluated at 6 and 36 months post-diagnosis using the General Quality of Life Inventory. Multiple linear regression models were used to evaluate changes in QOL and their associations with socio-demographic and medical factors. Results In general, breast cancer patients showed significant improvement over time in the physical, psychological, and social well-being domains, as well as overall QOL. However, QOL scores in several facets did not improve or even deteriorated, including increased negative feelings, reduced social support and interpersonal relationships, and worsened financial situation and living environment. Age at diagnosis was inversely associated with QOL changes in physical and psychological well-being and overall QOL scores. Compared with those who were disease-free, patients with a recurrence of disease had significantly poorer QOL scores across all well-being domains and almost all facets. Patients who received radiotherapy experienced significant improvements in physical and social well-being and overall QOL. Mixed ER/PR status was associated with improved scores in physical and psychological well-being and overall QOL. Education, body mass index, Charlson comorbidity score, TNM stage, type of surgery, chemotherapy, and immunotherapy were only associated with changes in certain well-being domains and/or facets, but not overall QOL. Tamoxifen use was not associated with changes in QOL outcomes. Conclusions Our study provides valuable information for developing strategies/interventions for improving the QOL of breast cancer patients.     

The association between chronic disease burden and quality of life among breast cancer survivors in Missouri

Greater chronic disease burden may decrease quality of life (QOL) of breast cancer survivors. Our objective was to investigate the association between chronic disease burden and QOL in breast cancer survivors at 1 year post-diagnosis. We analyzed cross-sectional data collected 1 year post-diagnosis from a sample of female breast cancer survivors identified from the Missouri cancer registry. We used eight RAND-36 subscales to assess physical, emotional, and social functioning QOL domains. Using Katz’s measure of comorbidity, we computed chronic disease burden (0, 1, and 2+). Multivariable general linear models for each QOL subscale were used to examine associations between chronic disease burden and QOL after controlling for potential covariates: socio-demographic, clinical, psychosocial, behavioral risk factors, and access to medical care. Participants (n = 1089) were 58-year old on average (range 27–96) and mostly White (92%), married (68%), had at least a high school education (95%), and had health insurance (97%). Sixty-six percent of survivors had a chronic disease burden score of 0, 17% had 1, and 17% had 2+. Chronic disease burden was significantly associated with each QOL subscale in crude models (P < 0.001). In fully adjusted models, chronic disease burden was still significantly correlated with six subscales, but not with the emotional well-being and role limitations due to emotional problems subscales. One year post-diagnosis, breast cancer survivors with higher chronic disease burden had lower physical and social functioning than survivors without additional health conditions. These differences were not fully explained by relevant covariates. Identifying modifiable targets for intervention will be critical for improving QOL outcomes among survivors who have other chronic health conditions.     

Use of cancer support groups among Latina breast cancer survivors

Introduction Although Latina women diagnosed with breast cancer may be at greater risk of psychosocial morbidity compared to white women, few utilize support services such as support groups. Reasons for this under-use among Latinas are unknown. Methods A cross-sectional telephone survey examined the association of predisposing, enabling, and need factors with use of cancer support groups among 330 Latina breast cancer survivors recruited from a population-based tumor registry in counties with Spanish language support groups. Results Thirty-two percent had ever used a support group. Among the 225 (68%) women who had never used one, major reasons for not using a support group included receiving enough support from other sources (20%), not needing one (18%), and being unaware of groups in their local area (17%). Women receiving quite a bit or a lot of encouragement from family members to attend a cancer support group were seven times more likely to have ever attended one than women receiving little or no encouragement (OR = 7.04, 95% CI 3.72, 13.30). Spiritual well-being was inversely associated with ever having attended a support group (OR = 0.93, 95% CI 0.89, 0.98). Discussion Results suggest that families play an important role in promoting use of support groups among Latina breast cancer survivors, and that spirituality may offer an alternative source of support. Implications for Cancer Survivors More effort should be directed toward providing culturally and linguistically appropriate support services to breast cancer survivors, and increasing awareness of these services among oncologists, patients and family members.     

The Role of a Clinician-Led Reflective Interview on Improving Self-Efficacy in Breast Cancer Survivors: A Pilot Study

Breast cancer survivors experience a wide range of survivorship issues that are not always adequately addressed. This study is an assessment of the Survivorship Consult (SC), a one-to-one clinician-led reflective interview used to capture a comprehensive summary of the survivor experience, to determine its impact on self-efficacy and the perceived likelihood that it initiates behavior change. Using a pre-test/post-test design, data were collected from participants (N = 40) using validated instruments and opened-ended questions to evaluate the SC. Participants found the SC to be a useful tool for planning and goal setting and improved self-efficacy as measured by the Cancer Behavior Inventory with an increase of 2.0 (p = 0.03). The SC demonstrates promise in improving the ability and confidence of breast cancer survivors to manage their care, but further research is required to understand the optimal implementation of this intervention and its impact on the delivery of survivorship services.     

Exploring the relationship between physical well‐being and healthy lifestyle changes among European‐ and Latina‐American breast and cervical cancer survivors

Background: Cancer and its treatments have a lingering and often negative impact on survivors' physical well‐being. The physical sequelae impinge on daily functioning and overall HRQOL, and perhaps influence lifestyle changes post‐cancer. This study aims to examine: (1) physical well‐being items that are associated with low overall health‐related quality of life; and (2) the relationship between physical well‐being outcomes and healthy lifestyle changes by cancer type. Methods: This study employed a cross‐sectional design with mixed sampling methods. In total 922 European‐ (n=452) and Latina‐American (n=470) breast (BCS) or cervical cancer survivors (CCS) were recruited from the California Cancer Surveillance Program and Los Angeles area hospital registries. Item responses from survivors in the lowest quartile of total quality of life scores and percentages reflecting low physical well‐being levels were calculated. Results: A statistical approach to individual items provides unique and valuable measurement and clinical information above and beyond physical well‐being total scores. Physical well‐being item responses varied according to ethnicity, income, and education. BCS and CCS showed different patterns in the relationship between physical well‐being items and lifestyle changes. Specifically, exercise was significantly related to physical well‐being items for BCS, while diet changes were significantly associated with physical well‐being for CCS. Conclusions: Results reveal unique correlates of physical well‐being items by cancer type, ethnicity, and lifestyle changes. Clinically, this study highlights the need for greater consideration of individual and medical characteristics in developing culturally sensitive and patient responsive interventions to promote healthy lifestyles and improve survivorship outcomes. Copyright © 2010 John Wiley & Sons, Ltd.     

Stress, immunity, and cervical cancer: biobehavioral outcomes of a randomized clinical trial [corrected]

PURPOSE: Cancer diagnosis and treatment imparts chronic stressors affecting quality of life (QOL) and basic physiology. However, the capacity to increase survival by improving QOL is controversial. Patients with cervical cancer, in particular, have severely compromised QOL, providing a population well-suited for the evaluation of novel psychosocial interventions and the exploration of mechanisms by which modulation of the psychoneuroimmune axis might result in improved clinical outcomes. EXPERIMENTAL DESIGN: A randomized clinical trial was conducted in cervical cancer survivors that were enrolled at >or=13 and <22 months after diagnosis (n=50), comparing a unique psychosocial telephone counseling (PTC) intervention to usual care. QOL and biological specimens (saliva and blood) were collected at baseline and 4 months post-enrollment. RESULTS: The PTC intervention yielded significantly improved QOL (P=0.011). Changes in QOL were significantly associated with a shift of immune system T helper type 1 and 2 (Th1/Th2) bias, as measured by IFN-gamma/interleukin-5 ELISpot T lymphocyte precursor frequency; improved QOL being associated with increased Th1 bias (P=0.012). Serum interleukin-10 and the neuroendocrine variables of cortisol and dehydroepiandrosterone revealed trends supporting this shift in immunologic stance and suggested a PTC-mediated decrease of the subject's chronic stress response. CONCLUSIONS: This study documents the utility of a unique PTC intervention and an association between changes in QOL and adaptive immunity (T helper class). These data support the integration of the chronic stress response into biobehavioral models of cancer survivorship and suggests a novel mechanistic hypotheses by which interventions leading to enhanced QOL could result in improved clinical outcome including survival.     

Cancer survivors exhibit a different relationship between muscle strength and health‐related quality of life/fatigue compared to healthy subjects

We investigated the difference in relationship between muscle strength and quality of life (QOL)/fatigue in long‐term cancer survivors and healthy subjects. Thirty‐six cancer survivors and 29 healthy subjects were assessed for body composition and bone status at the calcaneus using the Osteo Sono Assessment Index. Muscle strength was evaluated via handgrip and knee extensor strength. Health‐related QOL was assessed using the Medical Outcome Study 36‐item Short‐Form Health Survey. Fatigue was measured using the brief fatigue inventory. Cancer survivors exhibited lower QOL scores in the physical functioning, physical role function, bodily pain and general health domains (p < .05). Grip and knee extension muscle strength in cancer survivors was positively correlated with the physical function and bodily pain of QOL (p < .05). The usual fatigue subscale score was only significantly higher in cancer survivors than in healthy subjects (p < .05). However, there were no correlations between muscle strength and fatigue in cancer survivors. Our results showed that muscle strength was an important factor for improving QOL in cancer survivors. We believe that the findings of this study will be relevant in the context of planning rehabilitation for cancer survivors.     

Impact of newly diagnosed breast cancer on quality of life among Chinese women

Background Being diagnosed with breast cancer is a very stressful event that has a profound impact on multiple aspects of a patient’s daily life. Little is known about the quality of life (QOL) of Chinese women with newly diagnosed breast cancer. Methods The authors evaluated QOL in 2,236 Chinese women with newly diagnosed breast cancer who were recruited into the Shanghai Breast Cancer Survival Study between April 1, 2002 and March 31, 2004. Patients’ QOL was assessed after cancer diagnosis (median time 6.4 months; range 3.6–11.1 months) by using the General Quality of Life Inventory. Multiple linear regression models were used to analyze the associations of QOL outcomes with medical and socio-demographic factors. Results Patients showed significantly worse overall QOL and perceived health status than healthy women, reflected mainly by lower QOL scores in physical and psychological well-being domains. Completion of radiotherapy, ever use of tamoxifen, being underweight, having an increased number of chronic diseases, and low household income were significantly associated with lower overall QOL scores after adjusting for other factors. Age at diagnosis was inversely associated with physical well-being, positively associated with material well-being, and had minimal influence on overall QOL. Stage of disease, chemotherapy, and education were only associated with certain domains, but had no influence on overall QOL. Estrogen receptor/progesterone receptor status and type of surgery or immunotherapy did not appear to be associated with QOL. Conclusions The findings of the present study provide important information on QOL and their correlates among Chinese women with newly diagnosed breast cancer and are helpful in developing treatment strategies accordingly.     

A mixed-methods exploration of the quality of life of Chinese breast cancer survivors

ABSTRACT

Quality of life (QOL) in cancer survivorship is a multidimensional and subjective concept, which represents the personal sense of the physical, psychological, social, and spiritual consequences of cancer diagnosis and its treatment. This mixed method study aimed to explore the QOL of Chinese breast cancer survivors. Participants were recruited from a cancer self-help organization in the central area of China. QOL was assessed using the QOL–Cancer Survivor Scale and subsequently elicited by in-depth interviews. Results showed that participants had good overall QOL but with unfavorable aspects in psychological and social well-being. Interview data revealed that participants seldom attended spiritual activities. Instead, they actively reconnected with their “self” to create a positive meaning from their cancer experience. Understanding how Chinese breast cancer survivors perceive QOL is important for health professionals to address survivorship in this population.     

Resilience, reflection, and residual stress in ovarian cancer survivorship: a gynecologic oncology group study

Ovarian cancer is a life-threatening diagnosis which poses multiple challenges. The purpose of this study is to describe the quality of life (QOL) concerns and survivorship sequelae of long-term (>5 yr) early-stage ovarian cancer survivors accrued through the clinical cooperative Gynecologic Oncology Group. Forty-nine ovarian cancer survivors with a mean age at diagnosis of 55.9 yr (range 30-76) completed a telephone interview assessing QOL, psychosocial status, sexual functioning and late-effects of treatment. Results indicate that this disease-free early-stage sample enjoys a good QOL, with physical, emotional, and social well-being comparable to other survivors and same-aged noncancer cohorts. However, 20% of survivors indicated the presence of long-term treatment side effects, with a subset reporting problems related to abdominal and gynecologic symptoms, and neurotoxicity. Spiritual well-being was significantly positively associated with personal growth and mental health, and negatively associated with a declining health status. Lingering psychological survivorship sequelae included fear of follow-up diagnostic tests and fear of recurrence. Forty-three percent of respondents expressed that they would likely participate in a counseling program today to discuss psychosocial issues raised by having had ovarian cancer, and 56% stated that they would have attended a support program during the initial treatment if it had been offered. This information provides some insight into the complex survivorship relationships between quality of life, long-term physical and sexual sequelae, and factors of resilience and growth which appear to promote a sense of well-being as a result of the cancer experience.     

The role of in-depth reproductive health counseling in addressing reproductive health concerns in female survivors of nongynecologic cancers

ABSTRACT

The purpose of this study was to characterize reproductive concerns among female cancer survivors and determine the role of targeted counseling in improving overall reproductive quality of life (QOL). A survey was administered to women from the California Cancer Registry, ages 18-40, with nongynecologic cancers diagnosed from 1993 to 2007, who received fertility-compromising treatments. In total, 356 women completed the survey, which included questions regarding their reproductive health counseling history and the reproductive concerns scale (RCS), a validated reproductive QOL tool. Factors independently associated with higher RCS scores included a desire for children at the time of diagnosis, posttreatment infertility, treatment with chemoradiation or bone marrow transplant, and income less than $100,000 per year at diagnosis. Among the highest reported reproductive concerns were those related to loss of control over one's reproductive future and concerns about the effect of illness on one's future fertility. Across our population and independent of age, in-depth reproductive health counseling prior to cancer treatment was associated with significantly lower RCS scores. Our findings highlight the importance of early counseling and targeting high-risk groups for additional counseling after completion of cancer treatment. This approach may be an effective strategy for optimizing long-term reproductive QOL in this vulnerable population.     

Evaluation on quality of life for gynecologic cancer patients

Objective: To compare the quality of life (QOL) for gynecologic cancer patients with different cancer sites and to assess the impact of patients‘ characteristics,disease parameters, and treatments on the subscale and overall QOL. Methods: A prospective study was conducted including 146 gynecologic cancer patients.QOL data were collected using the general Functional Assessment of Cancer Therapy (FACT- G) QOL questionnaire. Results: Advanced stage patients showed significantly poor physical well-being, emotional well-being, and functional well-being, as compared with early stage patients. QOL was reported higher in older patients (P=0.03), patients above high school education(P=0.004), and patients with help at home (P=0.009).Conclusion: Patients with later stage, multi- modality therapy, poor education, and little social support have the most significant impairments and need moresupport.     

Dimensions of physical activity and their relationship to physical and emotional symptoms in breast cancer survivors

Background  Many breast cancer survivors experience long term sequelae, including fatigue, decreased physical functioning, pain, and psychological distress. Physical activity can ameliorate these problems, but there is little research on how activity should be performed to be most beneficial. This study explores how dimensions of physical activity (total energy expenditure, frequency, and duration) are associated with symptoms among breast cancer survivors. Methods  We conducted a secondary analysis of data on physical activity behavior and symptoms in a cross-sectional study (n = 148) of breast cancer survivors who were off treatment and had been diagnosed within the past 5 years. Results  Multivariate analyses showed that total energy expenditure was associated with better general health (p = 0.006) and fewer depressive symptoms (p = 0.014), while frequency of activity was linearly related to physical functioning (p = 0.047), pain (0.057), general health (p < 0.001), and depressive symptoms (p < 0.001). Duration was related to physical functioning, pain, and general health, but the worst outcomes were reported by the participants with the shortest and longest duration of activity (quadratic trend p values = 0.002, 0.003, 0.008, respectively). Discussion/Conclusions  Greater total energy expenditure, higher physical activity frequency, and moderate duration were associated with better outcomes for most symptoms, although there was no relationship between any of the dimensions of physical activity and fatigue. Implications for cancer survivors  The association of better outcomes with higher energy expenditure, higher frequency of activity, and moderate duration indicates that increasing activity through multiple short bouts may be the most beneficial for breast cancer survivors. However, randomized studies are needed to confirm this finding.     

Is somatic comorbidity associated with more somatic symptoms, mental distress, or unhealthy lifestyle in elderly cancer survivors?

Introduction  The associations of lifestyle factors, somatic symptoms, mental distress, and somatic comorbidity in elderly cancer survivors have not been well studied. This study examines these associations among elderly cancer survivors (age ≥65 years) in a population-based sample. Methods  A cross-sectional comparative study of Norwegian elderly cancer survivors. Combining information from The Norwegian Cancer Registry, and by self-reporting, 972 elderly cancer survivors were identified, of whom 632 (65%) had somatic comorbidity and 340 did not. Results  Elderly cancer survivors with somatic comorbidity had significantly higher BMI, more performed minimal physical activity, had more somatic symptoms, used more medication, and had more frequently seen a medical doctor than survivors without somatic comorbidity. In multivariable analyses, unhealthy lifestyle and higher somatic symptoms scores were significantly associated with cancer cases with somatic comorbidity. In univariate analyses those with somatic comorbidity were significantly older, had lower levels of education, higher proportions of BMI ≥ 30, less physical activity, poorer self-rated health, higher somatic symptoms score, more mental distress, had more frequently seen a medical doctor last year, and more frequently used daily medication. Discussion  Our outcome measures of lifestyle, somatic symptoms and mental distress were all significantly associated with somatic comorbidity in elderly cancer survivors, however only lifestyle and somatic symptoms were significant in multivariable analyses. Implications for cancer survivors  In elderly cancer survivors not only cancer, but also somatic comorbidity, deserve attention. Such comorbidity is associated with unhealthy lifestyles, more somatic symptoms and mental distress which should be evaluated and eventually treated.