Quality of life of family caregivers at 2 years after a relative's cancer diagnosis

Purpose: Although a growing body of research has documented the quality of life (QOL) of cancer survivors beyond the initial phase of the survivorship, similar knowledge about family caregivers of cancer survivors remains limited. Thus, the current study aimed: (a) to characterize the multidimensional aspects of the QOL of family caregivers of cancer survivors at 2 years after the diagnosis and (b) to predict certain aspects of caregivers' QOL by their demographic and caregiving characteristics. Methods: A total of 1635 caregivers of cancer survivors participated in the nationwide Quality of Life Survey for Caregivers. Multidimensional aspects of QOL were assessed, including mental and physical health, as well as psychological adjustment and spirituality at 2 years post‐diagnosis of their relatives' cancer. Results: Family caregivers reported normal levels of QOL after 2 years post‐diagnosis, except that they were more likely to experience increased awareness of spirituality than do individuals who personally experience a chronic illness. In addition, caregivers' age and income and care‐recipients' poor mental and physical functioning were significant predictors of their QOL at 2 years post‐diagnosis. Conclusions: The findings suggest that younger, relatively poor caregivers who are providing care to relatives with poor mental and physical functioning may benefit from interventions to help in their spirituality and psychological and physical adjustment, 2 years after the initial cancer diagnosis. In addition, older, relatively poor caregivers may benefit from programs to reduce the physical burden of caregiving. These findings have implications for advancing public health research and practice. Copyright © 2009 John Wiley & Sons, Ltd.     

Long‐term cancer survivors experience work changes after diagnosis: results of a population‐based study

Background: Although cancer survivorship is increasing with improved diagnosis and treatments, few studies have explored employment changes and the factors related to this change among cancer survivors. Therefore, we aim to explore the prevalence of employment problems in long‐term cancer survivors. In addition, we explored what patient or tumour characteristics predicted employment changes. Methods: All 1893 long‐term survivors of prostate cancer, endometrial cancer, non‐Hodgkin's lymphoma, and Hodgkin's lymphoma diagnosed between 1989 and 1998 in the area of the Comprehensive Cancer Centre South, The Netherlands were included in a population‐based cross‐sectional survey. Results: Response rate was 80% (n=1511). After excluding survivors without a job before diagnosis, 403 survivors remained; 197 (49%) experienced no changes in their work situation following cancer diagnosis, 69 (17%) were working fewer hours, and 137 (34%) stopped working or retired. A medium educational level was significant in reducing the risk of work changes. Being older, having more than one comorbid condition, being treated with chemotherapy, and disease progression were significant independent predictors of work changes after cancer. Experiencing work changes was associated with lower physical functioning but positively associated with social well‐being. Discussion: Long‐term cancer survivors experience work changes after diagnosis and treatment, and clinical factors significantly predicted work change after cancer. As such, our study underscores the importance of rehabilitation programs in improving the return to work after cancer. Copyright © 2009 John Wiley & Sons, Ltd.     

Fractures among long‐term survivors of childhood cancer

BACKGROUND:

Although reductions in bone mineral density are well documented among children during treatment for cancer and among childhood cancer survivors, little is known about the long‐term risk of fracture. The objective of this study was to ascertain the prevalence of and risk factors for fractures among individuals participating in the Childhood Cancer Survivor Study (CCSS).

METHODS:

Analyses included 7414 ≥5‐year survivors of childhood cancer diagnosed between 1970 and 1986 who completed the 2007 CCSS follow‐up questionnaire and a comparison group of 2374 siblings. Generalized linear models stratified by sex were used to compare the prevalence of reported fractures between survivors and siblings.

RESULTS:

The median ages at follow‐up among survivors and siblings were 36.2 years (range, 21.2‐58.8 years) and 38.1 years (range, 18.4‐62.6 years), respectively, with a median 22.7 years of follow‐up after cancer diagnosis for survivors. Approximately 35% of survivors and 39% of siblings reported ≥1 fracture during their lifetime. The prevalence of fractures was lower among survivors than among siblings, both in males (prevalence ratio, 0.87; 95% confidence interval, 0.81‐0.94; P < .001) and females (prevalence ratio, 0.94; 95% confidence interval, 0.86‐1.04; P = .22). In multivariable analyses, increasing age at follow‐up, white race, methotrexate treatment, and balance difficulties were associated with increased prevalence of fractures among female survivors (P = .015). Among males, only smoking history and white race were associated with an increased prevalence of fracture (P < .001).

CONCLUSIONS:

Findings from this study indicated that the prevalence of fractures among adult survivors did not increase compared with that of siblings. Additional studies of bone health among aging female cancer survivors may be warranted. Cancer 2012. © 2012 American Cancer Society.     

Health behaviour models and patient preferences regarding nutrition and physical activity after breast or prostate cancer diagnosis

This study aimed to improve understanding of prostate and breast cancer survivors' physical activity and nutrition and the association of these behaviours with two models. The first model, the Commonsense Self‐Regulation Model (CSM), addresses cognitive and emotional perceptions of illness whereas the Transtheoretical Model (TTM) focuses on stage of readiness to engage in a behaviour. Participants who had been diagnosed with either breast (n = 145) or prostate cancer (n = 92) completed measures of demographic and health information, illness representations, stage of change, self‐efficacy and preferences regarding health behaviour interventions. Health behaviours in the past seven days were measured via the International Physical Activity Questionnaire and concordance with national dietary guidelines. As hypothesised, TTM variables (stage of change and self‐efficacy) demonstrated independent associations with physical activity and nutrition in regression analyses. CSM variables were not independently associated with absolute levels of health behaviours but both TTM and CSM variables were independently associated with self‐reported changes in physical activity and nutrition following prostate or breast cancer diagnosis. Many participants reported high interest in receiving lifestyle interventions, particularly soon after diagnosis. Results supported application of the TTM and CSM models for strengthening behaviour change intentions and actions in breast and prostate cancer survivors.     

Measuring quality of life in cancer survivors: a methodological review of existing scales

Background: Studies examining quality of life (QoL) in cancer survivors have relied on instruments specific to the cancer patient population. Method: MEDLINE and PsycINFO were systematically searched to identify instruments and papers reporting the psychometric qualities of relevant instruments. Two reviewers undertook data extraction with respect to reliability, validity, predictive validity, responsiveness, acceptability, readability, cross cultural acceptability and feasibility. Results: Forty‐two instruments were identified. Most were either measures of general health‐related QoL or developed for individuals in active treatment. Nine were developed specifically for cancer survivors. None met the rigorous psychometric standards set by the review. All established acceptable levels of validity, however, only one instrument (Quality of Life‐Cancer Survivors) demonstrated adequate test–retest reliability. Acceptability, feasibility and predictive validity remain unexamined. Readability was examined in only two (Cancer Survivors' Unmet needs and Quality of Life in Adult Cancer Survivors (QLACS)). Only two instruments (QLACS and Impact of Cancer) have been developed with a wide range of cancer survivors. Generally, shorter‐term cancer survivors (1–5 years) are underrepresented. Conclusion: There is a need for a psychometrically credible QoL instrument for cancer survivors who are 1–5 years post diagnosis. Copyright © 2007 John Wiley & Sons, Ltd.     

Onset and relapse of psychiatric disorders following early breast cancer: a case–control study

Objective: Our objective is to evaluate the mental status of primary early breast cancer survivors according to DSM‐IV criteria, distinguishing new psychiatric diagnosis, which started after the cancer diagnosis from relapse. Methods: A comparative study of 144 breast cancer survivors and 125 women without previous history of cancer was carried out. Neuropsychiatric symptomatology was assessed retrospectively using standardized psychiatric examinations (Mini International Neuropsychiatric Interview, Watson's Post‐Traumatic Stress Disorder Inventory) over three successive periods, ‘before cancer’ (from childhood to 3 years before the interview), ‘around the cancer event’ (the last 3 years including the time of diagnosis and treatment), and ‘currently’ (the last 2 weeks). Results: Increased rates of anxiety and mood disorders were observed following a diagnosis of breast cancer compared with controls (generalized anxiety disorder (GAD) and major depressive disorder (MDD); 10.4 vs 1.6% and 19.4 vs 8.8%, respectively). The cancer disease promoted the development of dysthymia (n=4 new cases/6 two‐year prevalent cases) and PTSD (7/7) and the re‐emergence of MDD (n=21 relapses/28 three‐year prevalent cases) and GAD (10/15). No improvement in serious mood disorders such as MDD (16.0 vs 7.2%) and dysthymia (4.2 vs 0%) was reported at the time of interview, more than 1.75 years (median time) after the cancer surgery, the prevalence being 2–4 times greater in breast cancer survivors than in controls. Conclusion: Despite significant advances in treatment, a diagnosis of breast cancer is highly associated with various forms of psychopathology, regardless of psychiatric history, with symptoms persisting after treatment. These results may assist clinicians in planning mental healthcare for women with breast cancer. Copyright © 2009 John Wiley & Sons, Ltd.     

Quality of life of family caregivers 5 years after a relative's cancer diagnosis: follow-up of the national quality of life survey for caregivers

Background. Although cancer has been considered as a chronic disease for those diagnosed, the long‐term impact of cancer on the family caregivers' quality of life (QOL) remains unknown. Thus, the current study aimed: (a) to characterize family caregivers of cancer survivors, (b) to describe the multidimensional aspects of QOL of family caregivers of cancer survivors, and (c) to identify demographic and caregiving experience factors that may play significant roles in the caregivers' QOL around 5 years after the relative's initial diagnosis. Methods. A total of 1218 caregivers participated in the 5‐year follow‐up nationwide QOL Survey for Caregivers. Demographics and caregiving experiences were measured 2 years post‐diagnosis of their relative's cancer. Multidimensional aspects of QOL were assessed, including mental and physical health, psychological adjustment, and spirituality at 5 years post‐diagnosis. Results. Three groups of caregivers were identified: former caregivers due to the recipients being in remission, former caregivers whose recipients were deceased, and current caregivers. Current caregivers reported worst levels of QOL. Bereaved caregivers reported lower levels of psychological and spiritual adjustment than former caregivers whose recipients were in remission. In addition, caregivers' age and stress were consistent predictors of QOL across three caregiver groups at 5 years post‐diagnosis. Conclusions. The findings help to increase evidence‐based awareness of the long‐term impact of cancer on the family caregivers' QOL. Findings also have implications for developing programs, whereby family caregivers in the various phases of caregivership will benefit by improving their QOL. Copyright © 2010 John Wiley & Sons, Ltd.     

Weight control needs and experiences among rural breast cancer survivors

Objective: Rural women are understudied in research on weight control among breast cancer survivors despite having higher obesity rates than their urban counterparts placing them at higher risk for recurrence. The purpose of this survey study was to describe weight status and methods used for weight control in rural breast cancer survivors and to examine psychosocial factors in this population associated with weight change since breast cancer diagnosis. Methods: Women treated for breast cancer within the past 6 years at one of three rural Cancer Centers were mailed a survey with a cover letter from their oncology provider. Results: Survey respondents (n=918, 83% response rate) were 96% White non‐Hispanic, on average 3.2 years from treatment, and 11% reported metastatic disease. Among respondents without known metastatic disease, 68% were overweight or obese, 37% were obese, and 25% reported a weight gain exceeding 5 kg since diagnosis. Among the overweight/obese women, 61% were currently attempting weight loss, and the most common weight loss method was dieting on one's own without assistance. Psychosocial factors associated with weight gain since diagnosis included depression, fear of cancer recurrence, diminished physical strength, body image concerns, relationship changes, and financial stressors. Conclusions: The high response rate indicates a general interest in body weight issues among rural BrCa survivors, and the findings highlight the need for weight control programs in this population. Findings also indicate that factors related to poor adjustment to breast cancer are associated with weight gain among rural women. Copyright © 2010 John Wiley & Sons, Ltd.     

Applying a conceptual model for examining health-related quality of life in long-term breast cancer survivors: CALGB study 79804

Objectives: The Survivor's Health and Reaction study used a quality‐of‐life model adapted for cancer survivors by Dow and colleagues to identify factors related to global health‐related quality of life (HRQL) and to document the prevalence of problems and health‐oriented behaviors in a follow‐up study of breast cancer patients who participated in CALGB 8541. Methods: A total of 245 survivors (78% of those invited) who were 9.4–16.5 years post‐diagnosis completed surveys that inquired about current HRQL, economic, spiritual, physical and psychosocial concerns, and health‐oriented behaviors (e.g. smoking, exercise, and supplement use). A regression model was developed to examine factors related to global HRQL across all domains. Results: The regression model revealed that decreased energy levels (odds ratio (OR)=1.05, 95% confidence interval (CI): 1.03, 1.07), having heart disease (OR=5.01, 95% CI: 1.39, 18.1), having two or more co‐morbidities (OR=2.39, 95% CI: 1.10, 5.19), and lower social support (OR=1.03, 95% CI: 1.02, 1.05) were associated with lower global HRQL. Factors related to psychological, spiritual, and economic domains were not predictive of global HRQL. Regarding lifestyle changes, some women reported engaging in health‐oriented behaviors since their cancer diagnosis, such as improving eating habits (54%), increasing exercise (32%), and reducing/quitting smoking (20%). The most prevalent problems reported by women at follow‐up were menopausal symptoms (64%), such as hot flashes and vaginal dryness, osteoporosis (25%), and lymphedema (23%). Conclusion: Suggestions are provided to target interventions, such as provider‐based strategies, in order to improve HRQL in long‐term breast cancer survivors. Copyright © 2008 John Wiley & Sons, Ltd.     

Sexual functioning in long‐term survivors of Hodgkin's lymphoma

Objective: Studies of Hodgkin's lymphoma (HL) survivors have reported long‐term adjustment problems including sexual dysfunction, but the prevalence and persistence of sexual problems in HL survivors have not been well characterized. This study aimed to address these questions by comparing sexual health in a large cohort of long‐term HL survivors with a noncancer control group. Methods: A mailed survey including questions about current sexual problems and sexual satisfaction was completed by 465 HL survivors and 205 sibling controls. Survivors ranged from 20 to 82 years (median=44) and were treated ?7 years prior (median=18). Results: Sexual problems were commonly reported by HL survivors, with 54.2% reporting decreased sexual activity and 41.4% reporting decreased interest. When survivors' current sexual functioning was compared with the control group, however, no differences were found, and overall sexual satisfaction was positive in both groups. Among survivors, age was not associated with sexual problems but had a small significant negative association with satisfaction ( ρ =?0.12; p<0.05). No associations between time since diagnosis, disease stage, and chemotherapy treatment and sexual functioning were found. Conclusions: Consistent with previous studies, HL survivors reported high rates of current sexual problems. However, no differences in sexual problems or sexual satisfaction were found between survivors and controls. Results indicate that over the long term, survivors' sexual functioning does not differ from noncancer controls. Findings underscore the importance of including healthy control groups to determine whether difficulties reported by cancer survivors can be attributed to cancer treatment. Copyright © 2009 John Wiley & Sons, Ltd.     

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.     

Birth rates among female cancer survivors

BACKGROUND:

More women of fertile age are long‐term survivors of cancer. However, population‐based data on birth rates of female cancer survivors are rare.

METHODS:

A total of 42,691 women ≤ 45 years with a history of cancer were identified from the Swedish Multi‐Generation Register and the Swedish Cancer Register, for whom relative birth rates were calculated as compared to the background population, ie, standardized birth ratios (SBRs). Independent factors associated with reduced birth rates among cancer survivors were estimated using Poisson modeling.

RESULTS:

Compared to the background population, cancer survivors were 27% less likely to give birth (SBR = 0.73, 95% confidence interval [CI] = 0.72‐0.75). Large difference in SBRs existed by cancer site, with high SBRs for survivors of melanoma skin, thoracic, head and neck, and thyroid cancers, and low SBRs for reproductive, breast, brain and eye, and hematopoietic cancer survivors. Parity status at diagnosis affected fertility: women who already had a child at the time of diagnosis were less likely to give birth (SBR = 0.50, 95% CI = 0.48‐0.53) than were nulliparous women (SBR = 0.87, 95% CI = 0.85‐0.90). Multivariate analysis showed that cancer site (reproductive organs), age at onset of cancer (< 12 years), and parity status were all significant and independent predictors of a reduced probability of giving birth after diagnosis.

CONCLUSIONS:

Cancer survivors are less likely to give birth compared with the background population. Large variations in the likelihood to give birth after diagnosis were seen according to age at onset, cancer site, and parity status at diagnosis. Cancer 2013. © 2013 American Cancer Society.     

Live birth outcomes after adolescent and young adult breast cancer

Reproductive outcomes are an important survivorship concern for women diagnosed with cancer as adolescents and young adults (AYAs). We examined the incidence of live birth and the prevalence of adverse birth outcomes according to tumor and treatment characteristics among AYAs with breast cancer. Women diagnosed with breast cancer at ages 15–39 during 2000–2013 were identified using the North Carolina Central Cancer Registry (n = 4,978). Cancer registry records were linked to state birth certificate files from 2000 to 2014 to identify births to women with and without a breast cancer history. The breast cancer cohort was followed until live birth, death, age 46, or December 31, 2014, whichever occurred first. For each birth to breast cancer survivors (n = 338), we sampled 20 births to women without a recorded cancer diagnosis, with frequency matching on maternal age and year of delivery. The cumulative incidence of live births after breast cancer was 8% at 10 years. Births were less common among women treated with chemotherapy. Overall, the prevalence of preterm birth, low birth weight, small‐for‐gestational age (SGA) and Cesarean delivery did not differ substantially between births to women with and without breast cancer. However, births to women with ER‐negative disease were more likely to be preterm (PR = 1.84; 95% CI: 1.11–3.06). In this population‐based study, <10% of AYA breast cancer survivors had a live birth within 10 years of their diagnosis. The increase in risk of preterm delivery among ER‐negative survivors in our cohort warrants further investigation in larger studies.     

Methodological considerations for disentangling a risk factor's influence on disease incidence versus postdiagnosis survival: The example of obesity and breast and colorectal cancer mortality in the Women's Health Initiative

Often, studies modeling an exposure's influence on time to disease‐specific death from study enrollment are incorrectly interpreted as if based on time to death from disease diagnosis. We studied 151,996 postmenopausal women without breast or colorectal cancer in the Women's Health Initiative with weight and height measured at enrollment (1993–1998). Using Cox regression models, we contrast hazard ratios (HR) from two time‐scales and corresponding study subpopulations: time to cancer death after enrollment among all women and time to cancer death after diagnosis among only cancer survivors. Median follow‐up from enrollment to diagnosis/censoring was 13 years for both breast (7,633 cases) and colorectal cancer (2,290 cases). Median follow‐up from diagnosis to death/censoring was 7 years for breast and 5 years for colorectal cancer. In analyses of time from enrollment to death, body mass index (BMI) ≥ 35 kg/m² versus 18.5–<25 kg/m² was associated with higher rates of cancer mortality: HR = 1.99; 95% CI: 1.54, 2.56 for breast cancer (p trend <0.001) and HR = 1.40; 95% CI: 1.04, 1.88 for colorectal cancer (p trend = 0.05). However, in analyses of time from diagnosis to cancer death, trends indicated no significant association (for BMI ≥ 35 kg/m², HR = 1.25; 95% CI: 0.94, 1.67 for breast [p trend = 0.33] and HR = 1.18; 95% CI: 0.84, 1.86 for colorectal cancer [p trend = 0.39]). We conclude that a risk factor that increases disease incidence will increase disease‐specific mortality. Yet, its influence on postdiagnosis survival can vary, and requires consideration of additional design and analysis issues such as selection bias. Quantitative tools allow joint modeling to compare an exposure's influence on time from enrollment to disease incidence and time from diagnosis to death.     

Life is precious and I'm making the best of it: coping strategies of long‐term cancer survivors

Objective: Coping strategies mediate the relationship between challenging situations and their impact on psychosocial outcomes. Many long‐term cancer survivors continue to face a range of challenges in their daily lives, yet little is known about how this population copes. The study explored the prevalence and predictors of cancer‐specific coping strategies among a heterogeneous sample of long‐term cancer survivors. Methods: A population‐based cross‐sectional sample of 863 adult cancer survivors 5–6 years post‐diagnosis completed a pen‐and‐paper survey. Cancer‐specific coping was assessed via the Mini‐Mental Adjustment to Cancer (mini‐MAC) Scale. Potential predictor variables included patient, disease and treatment characteristics and social support. Results: The most commonly used coping strategies were fatalism and fighting spirit. Of those survivors that used any of the coping strategies assessed, 53% used at least two strategies. Maladaptive coping was commonly predicted by low social support (OR=1.77 to 2.49) and being a disability pensioner, whereas having ever received chemotherapy widely predicted greater use of all types of coping. A weekly household income of over $1000 a week uniquely predicted not using any mini‐MAC coping strategies. Conclusions: Survivors continue to engage in cancer‐specific coping strategies many years after diagnosis, albeit to a lesser extent than recent survivor populations. A number of predictors were identified that can alert health workers to long‐term survivors at increased risk of maladaptive coping. Given that low social support consistently predicted maladaptive coping responses, interventions aimed at promoting positive coping responses should include strategies to increase access to social support. Copyright © 2010 John Wiley & Sons, Ltd.     

Prevalence and associated factors of sexual problems after early‐stage breast cancer treatment: results of a French exploratory survey

Objective: The objective of this study was to assess the prevalence and associated factors of sexual activity, sexual problems or sexual satisfaction in French early‐stage breast cancer survivors (BCS). Methods: Eight hundred and fifty eligible, post‐treatment (6 months–5 years) female patients, aged 18–70 years, randomly selected from a consultation list, were invited to fill in questionnaires exploring quality of life (EORTC QLQ‐C30 and QLQ‐BR23), body image scale, and sexuality (Sexual Activity Questionnaire–SAQ; Relationship and Sexuality Scale; French Sexual Behaviour Survey—CSF). Results: Fifty‐three percent of BCS agreed to participate. Participating women (n=378) were younger, more often premenopausal at diagnosis and with a more recent diagnosis than non‐respondents. The prevalence of sexual problems was significantly higher in BCS compared with adjusted data from a French female representative sample (p<0.0001). In logistic regression, no sexual activity (R²=0.37) or sexual dissatisfaction (R²=0.28) were associated with the feeling of emotional separation in the couple or of partner's fear of sexual intercourse, lower emotional functioning, poorer body image, or co‐morbidities. In sexually active women (71% of respondents), lower frequency of sexual activity (R²=0.26), lower sexual pleasure (R²=0.22), or higher sexual discomfort (R²=0.22) were associated with the feeling of emotional separation in the couple or of partner's fear of sexual intercourse, lower emotional functioning, age (>50 years), nausea, or insomnia (all Hosmer–Lemeshow tests: p=NS). Conclusions: Psychological factors including the perception of the couple relationship appeared prominent in BCS women's experience of sexual problems. Copyright © 2010 John Wiley & Sons, Ltd.