Cancer survivorship programs at the Dana-Farber Cancer Institute.

PURPOSE: We sought to present the current status of survivorship programs at Dana-Farber Cancer Institute which include the David B. Perini, Jr. Quality of Life Clinic for survivors of childhood cancer, Stop and Shop Neuro-Oncology Outcomes Clinic for pediatric brain tumor survivors, and Adult Survivorship Program for adult cancer survivors including those diagnosed as adults (age 18 years and older) and adult survivors of childhood cancer, in an effort to share best practices as well as challenges. METHODS: Description of programs and discussion. RESULTS: Our institutional programs are detailed regarding their history and the multidisciplinary approach and both consultative and long-term care delivery models for pediatric and adult cancer survivors, with the goal of meeting the spectrum of survivorship care needs, from diagnosis and management of long-term effects of cancer-directed therapy and surveillance for subsequent cancer, to healthy lifestyle promotion and psychosocial support. Program investigators conduct research to understand the risks and unmet needs of cancer survivors, and to develop and test interventions to improve care delivery and medical and psychosocial outcomes. There are also educational initiatives detailed. CONCLUSIONS: Survivorship programs at Dana-Farber are designed to optimize care and outcomes for cancer survivors including conducting quality improvement initiatives and research to further understand and meet the clinical needs of the large, heterogenous, and growing population cancer survivors into the future. IMPLICATIONS FOR CANCER SURVIVORS: Programs like ours as well as those ongoing and planned aim to improve the comprehensive care of diverse cancer survivors.

Finding sexual health aids after cancer: are cancer centers supporting survivors' needs?

PURPOSE: Sexual dysfunction is one of the most prevalent and distressing treatment-related side effects for both male and female cancer survivors. Survivorship care guidelines recommend therapeutic sexual aids to help improve sexual problems. However, little is known about the availability of sexual aids and resources at cancer centers. METHODS: Twenty-five comprehensive cancer centers affiliated with both the National Cancer Institute and the National Comprehensive Care Network were surveyed using the "mystery shopper" method to determine whether various types of sexual aids were available at the centers. Staffs from cancer center staff retail stores and patient boutiques were queried in separate telephone calls regarding the availability of these aids for and women. RESULTS: Of the 25 centers contacted, 23 (92%) responded about aids for men, and 22 (88%) responded about aids for women. Eighty-seven percent of the centers reported having no sexual aids available for men, and 72% of centers reported having no aids available for women. The most common advice given to mystery shoppers was a suggestion to use the internet. Only one center had numerous aids/resources for both men and women. CONCLUSIONS: The large majority of cancer centers reported having no sexual aids or other sexual health resources available for men or women. IMPLICATIONS FOR CANCER SURVIVORS: Results underscore the widespread lack of resources to promote sexual health rehabilitation at major cancer centers, both for male and female survivors.

Evaluation and treatment of insomnia in adult cancer survivorship programs.

PURPOSE: Insomnia is commonly experienced by cancer survivors. Chronic insomnia is associated with significant physical and psychosocial consequences if not properly treated. Both the National Cancer Institute (NCI) and the National Comprehensive Cancer Network (NCCN) recommend the evaluation of sleep disturbances and evidence-based treatment of insomnia during routine survivorship care. To better understand current clinical practices, we conducted a survey of major cancer centers across the United States (US). METHODS: Adult survivorship programs at the 25 US cancer centers that are both NCI-designated comprehensive cancer centers and NCCN member institutions were surveyed about the evaluation and treatment of insomnia in their hospital. RESULTS: All institutions responded to the survey. Thirteen centers (56 %) reported screening <25 % of survivors for sleep disorders, and few clinicians providing survivorship care were well-prepared to conduct a proper sleep evaluation. Insomnia was most commonly treated with sleep hygiene, or pharmacotherapy, rather than cognitive-behavioral therapy. No program reported that >50 % of their survivors were receiving optimal insomnia-related care. A variety of methods to improve insomnia care were endorsed by respondents. CONCLUSIONS: There is a clear need to improve the evaluation and treatment of insomnia for cancer survivors at institutions across the country. Cancer centers deemed a number of modalities relevant for improving provider confidence in addressing sleep challenges. IMPLICATIONS FOR CANCER SURVIVORS: To improve the quality of insomnia care for survivors, systematic interventions to increase standardized screening for sleep disorders, providing additional sleep medicine training for survivorship clinicians, and optimizing the role of sleep medicine specialists in the oncology setting should be considered.

Can the distress thermometer (DT) identify significant psychological distress in long-term cancer survivors? A comparison with the Brief Symptom Inventory-18 (BSI-18).

BACKGROUND: As the number of cancer survivors continues to grow, identification of brief, valid psychological screening measures is critical for providing these survivors with appropriate psychosocial care. The distress thermometer (DT) is a one-item distress screening recommended by the National Comprehensive Cancer Network (NCCN) for screening cancer patients during their treatment. METHOD: In this study, the validity of the DT for identifying psychological distress in cancer survivors was evaluated by comparing results of the DT to the Brief Symptom Inventory-18 (BSI-18) in a sample of 120 survivors of adult onset cancer. RESULTS: Results indicated that when using the NCCN suggested cutoff score of 5, the DT only identified 10 of the 21 BSI-18 positive cases of psychological distress (sensitivity 47.6%; specificity 90.9%). Using an alternative DT cutoff score of 4, 12 of the 21 BSI-18 positive cases were identified (sensitivity 51.7%; specificity 89.9%). CONCLUSIONS: The results do not support the validity of the DT in survivors of adult cancers.

Psychological status in childhood cancer survivors: a report from the Childhood Cancer Survivor Study.

Psychological quality of life (QOL), health-related QOL (HRQOL), and life satisfaction outcomes and their associated risk factors are reviewed for the large cohort of survivors and siblings in the Childhood Cancer Survivor Study (CCSS). This review includes previously published manuscripts that used CCSS data focused on psychological outcome measures, including the Brief Symptom Inventory (BSI-18), the Medical Outcomes Survey Short Form-36 (SF-36), the Cantril Ladder of Life, and other self-report questionnaires. Comparisons and contrasts are made between siblings and survivors, and to normative data when available, in light of demographic/health information and abstracted data from the medical record. These studies demonstrate that a significant proportion of survivors report more symptoms of global distress and poorer physical, but not emotional, domains of HRQOL. Other than brain tumor survivors, most survivors report both good present and expected future life satisfaction. Risk factors for psychological distress and poor HRQOL are female sex, lower educational attainment, unmarried status, annual household income less than $20,000, unemployment, lack of health insurance, presence of a major medical condition, and treatment with cranial radiation and/or surgery. Cranial irradiation impacted neurocognitive outcomes, especially in brain tumor survivors. Psychological distress also predicted poor health behaviors, including smoking, alcohol use, fatigue, and altered sleep. Psychological distress and pain predicted use of complementary and alternative medicine. Overall, most survivors are psychologically healthy and report satisfaction with their lives. However, certain groups of childhood cancer survivors are at high risk for psychological distress, neurocognitive dysfunction, and poor HRQOL, especially in physical domains. These findings suggest targeting interventions for groups at highest risk for adverse outcomes and examining the positive growth that remains despite the trauma of childhood cancer.

Complementary and alternative therapy use in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

BACKGROUND: Little information is available on the use of complementary and alternative medicine (CAM) in long-term survivors of childhood and adolescent cancer. PROCEDURE: The Childhood Cancer Survivor Study (CCSS) is a resource evaluating the long-term effects of cancer and associated therapies in 5-year survivors of childhood and adolescent cancer diagnosed between 1970 and 1986 before the age of 21 years. A survey of CAM use during the previous year was distributed in 2000-2001 and completed by 9,984 survivors and 2,474 sibling controls. RESULTS: CAM use reporting was similar in cases (39.4%) and siblings (41.1%). Compared to female siblings, female survivors were more likely to use biofeedback (odds ratio (OR) = 3.3; 95% CI = 1.0-10.8) and hypnosis/guided imagery (OR = 3.2; 95% CI = 1.6-6.8); male survivors were more likely than male siblings to use herbal remedies (OR = 1.3; 95% CI = 1.1-1.6). Factors associated with CAM use in survivors included elevated scores on the brief symptom inventory (BSI)-18 (OR = 1.6; 95% CI = 1.3-1.9), prolonged pain (OR = 1.5; 95% CI = 1.3-1.7), and having seen a physician in the past 2 years (OR = 1.6; 95% CI = 1.4-1.8). Survivors reporting low alcohol intake and excellent or good general health reported lower levels of CAM use (OR = 0.7; 95% CI = 0.7-0.8 and OR = 0.8; 95% CI = 0.7-0.9, respectively). CONCLUSIONS: Survivors have a similar reported use of CAM compared to a sibling cohort. However, our data suggest that survivors turn to CAM for specific symptoms related to previous diagnosis and treatment. Future research is needed to determine whether CAM use reflects unmet health needs in this population.

Screening adult survivors of childhood cancer with the distress thermometer: a comparison with the SCL-90-R.

As the number of cancer survivors continues to grow, identification of brief, valid psychological screening measures will be a critical step in providing them with appropriate psychosocial care. The distress thermometer (DT) is a one-item distress screening that is recommended by the National Comprehensive Cancer Network (NCCN) for screening cancer patients, but has not been evaluated for cancer survivors. This study evaluated the validity of the DT compared to the Symptom Checklist-90-Revised (SCL-90-R) in a sample of 119 adult survivors of childhood cancer aged 18-45 (median=23.5). Results indicated that when using the NCCN suggested cut-off score of 5, the DT only identified 20 of the 36 SCL-90-R-positive cases of psychological distress (sensitivity 55.6%; specificity 80.7%). Using an alternative DT cut-off score of 4 identified 23 of the 36 SCL-90-R-positive cases (sensitivity 63.9%; specificity 65.1%). Receiver operating characteristics analysis indicated that the DT had only fair diagnostic utility relative to the SCL-90-R (AUC=0.72). Results do not support the validity of the DT in adult survivors of childhood cancer.

Feasibility and validity of a one-item fatigue screen in a thoracic oncology clinic.

INTRODUCTION: Fatigue is one of the most common symptoms in patients with advanced cancers. Despite its high prevalence, it is often unrecognized and undetected. This study assessed the feasibility and validity of a one-item fatigue scale (OIFS) in an outpatient oncology clinic. METHODS: Over a 3-month trial period, all patients in a thoracic oncology clinic were screened for fatigue with a one-item, 0 to 10 scale. Over a second trial period, an additional sample of 100 clinic patients completed validated measures of fatigue, including the Functional Assessment of Chronic Illness Therapy-Fatigue Scale (FACIT-F) and Fatigue Symptom Inventory (FSI), in addition to the OIFS. RESULTS: During the initial trial period, more than 95% of patients (574 of 600) had a documented OIFS score on their first clinic visit. Data from the second cohort of patients revealed that the OIFS had good test-retest reliability (r = 0.88) and was highly correlated with the FSI severity scale (0.87) and the FACIT-F (-0.75). Receiver operating characteristic analysis showed the OIFS had good discrimination compared with the FACIT-F (area under the curve = 0.87). Sensitivity and specificity of several OIFS cutoff scores were compared, and scores between 3 and 5 were found to be optimal. CONCLUSIONS: The use of a one-item scale to screen for fatigue is feasible in an ambulatory clinic setting. This scale had convergent validity with other measures of fatigue and was able to identify cases of fatigue that met criteria on the FACIT-F. These data support the recommendations in the National Comprehensive Cancer Network guidelines for cancer-related fatigue screening.

Parents' decision-making preferences in pediatric oncology: the relationship to health care involvement and complementary therapy use.

This study investigated how parents' preferred level of control in treatment decision-making is related to their personal health care involvement and to their decision to use complementary therapies (CTs) for their child. One hundred-eighteen parents of pediatric oncology patients completed an anonymous CT survey. The Krantz Health Opinion Survey (KHOS) was used to determine parents' preferred involvement in personal health care, and the Control Preferences Scale for Pediatrics (CPS-P) measured preferred role in pediatric treatment decision-making. Unlike previous studies of adult cancer patients, most parents preferred active or collaborative decision-making. The KHOS and CPS-P were significantly correlated, indicating that parents' preferred role in children's treatment decisions was related to their own personal health care involvement. Forty-six percent of parents used CTs for their child, and 33% began using a new CT after diagnosis. The hypothesized relationship between CT use and parents' own health care involvement was partially supported. Preference for control in decision-making was not associated with CT use. These findings provide validation for the newly developed CPS-P and indicate that parents' decisions to use CT for their child are related in part to individual health care preferences.