Development of a survivorship screening tool in survivors of hematopoietic cell transplant.

PURPOSE: This study describes the development of a screening measure focused on the potential needs of hematopoietic cell transplant (HCT) survivors at least 1-year post-transplant. METHODS: A multidisciplinary team met regularly to develop a screening measure to better understand the ongoing medical and clinical symptoms experienced by survivors of HCT. This measure was given to 299 patients presenting to an HCT survivorship clinic, with referrals offered for any issues reaching clinical threshold. A factor analysis was performed to examine the underlying factor structure of the measure. RESULTS: Analyses indicated a 3-factor underlying structure, including physical, emotional, and practical concerns. Areas most consistently endorsed as ongoing areas of concern included fatigue, financial concerns, and worry about their future. Interestingly, while many patients were interested in referrals for these issues, some patients did not wish to have their symptoms managed at our center. CONCLUSIONS: Survivors of hematopoietic cell transplant continue to experience symptoms well after their treatment has ended, including issues related to the emotional, physical, and practical impact of their illness and treatment regimen. It is vital that their providers understand the frequency of these concerns as well as patients' preference for intervention. IMPLICATIONS FOR CANCER SURVIVORS: While HCT has become increasingly successful in treating hematologic cancers, many survivors experience a range of issues post-transplant. Survivorship care for these patients must include ongoing thorough assessment related to the practical, emotional, and medical symptoms experienced post-transplant, with appropriate intervention provided in-house where possible or in the community according to patient preference.

Patient-reported outcome changes at the end of life in recurrent platinum-resistant ovarian cancer: An NRG oncology/GOG study.

OBJECTIVES: In a prospective study of platinum-resistant ovarian cancer patients, we examined whether the Disease-related Symptoms-Physical (DRS--P) scale of the NCCN/FACT-Ovarian Cancer Symptom Index-18 (NFOSI-18) is responsive to clinical change in patients estimated by their provider to survive at least six months. METHODS: The NFOSI-18, and other FACT measures, was collected at study entry and 3 and 6 months post-enrollment. Measures were compared for those who died or dropped off study prior to 3 months or prior to 6 months (assumed as health deterioration over time), or those who stayed on study through 6 months (presumed as stable disease over time). Statistical analyses included a fitted linear mixed model for estimating the group differences over time, Cox regression to assess the probability of survival with patient-reported outcomes, and effect size. RESULTS: DRS-P scores of patients who completed only one assessment were significantly lower compared to patients who were able to complete two assessments [5.9 points lower (2.0-9.8); p < 0.01], or three assessments [8.1 points lower (4.8-11.5); p < 0.01]. Measures of abdominal discomfort, functional well-being, emotional well-being, and quality of life were also significant, but treatment side effects were not. Further, in every scale except for neurotoxicity, higher (better) baseline scores were associated with a decreased likelihood of death, after adjusting for age, performance and disease status. CONCLUSION: The NFOSI-18 DRS-P scale is responsive to clinical change. It has potential as an indicator of changing health status with ovarian cancer disease progression, distinct from treatment side effects.

Patterns of Loss to Follow-Up Care Among Childhood Cancer Survivors.

PURPOSE: Surveillance for long-term complications related to previous cancer therapy can help diagnose/manage chronic health conditions in childhood cancer survivors and improve survivor quality of life. However, a challenge to delivering long-term care to childhood cancer survivors is loss to follow-up; many patients discontinue care at specialized survivor care centers. The purpose of this study was to examine patterns of loss to follow-up among a cohort of childhood cancer survivors. METHODS: This retrospective study examined follow-up patterns among a nonrandom representative sample of 370 childhood cancer survivors among 1116 patients from a single institution. The median age of patients at diagnosis was 10.2 years (range <1-21). Factors potentially related to follow-up were utilized to evaluate patterns of follow-up across 5-year intervals following completion of active therapy. The association between patient characteristics and follow-up was evaluated using univariate and multivariate binomial regression models. RESULTS: The probability of follow-up 1-5 years post-treatment was 91.2% (89.7%-92.5%) but dropped to 68.5% (66.2%-70.8%) during years 6-10, 47.7% (45.0%-50.3%) during years 11-15, and continued to steadily decrease over time. Overall, white race, diagnoses at younger ages, patients with lymphomas/leukemias, and decade of diagnosis were each associated with somewhat better rates of follow-up. CONCLUSIONS: These findings highlight the lack of follow-up by adult survivors of childhood cancer with only approximately one-half of patients returning for follow-up 10 years after completion of therapy. Interventions focused on educating both patients and primary care physicians may help to increase long-term follow-up care among this at-risk population.

Adjustment to Acute Leukemia: The Impact of Social Support and Marital Satisfaction on Distress and Quality of Life Among Newly Diagnosed Patients and Their Caregivers.

Little is known about the specific patterns of adjustment among newly diagnosed acute leukemia patients and their caregivers. This study examined the trajectories of patient and caregiver distress over time as well as the extent to which marital satisfaction and social support moderated these trajectories among those with significant-other caregivers. Forty six patient-caregiver dyads provided ratings at four time points: within 1 week of diagnosis (T1), 2 week follow-up (T2), 6 week follow-up (T3) and 12 week follow-up (T4). As anticipated, patients and caregivers reported higher levels of distress around the time of diagnosis than they did during subsequent time points. Marital satisfaction was a significant predictor of distress among patients, whereas among caregivers, social support predicted distress and quality of life. Results support the inclusion of relational variables such as social support and relationship satisfaction in the assessment of newly diagnosed patients and families in order to best identify those at risk for distress over time.

Tobacco Cessation May Improve Lung Cancer Patient Survival.

INTRODUCTION: This study characterizes tobacco cessation patterns and the association of cessation with survival among lung cancer patients at Roswell Park Cancer Institute: an NCI Designated Comprehensive Cancer Center. METHODS: Lung cancer patients presenting at this institution were screened with a standardized tobacco assessment, and those who had used tobacco within the past 30 days were automatically referred to a telephone-based cessation service. Demographic, clinical information, and self-reported tobacco use at last contact were obtained via electronic medical records and the Roswell Park Cancer Institute tumor registry for all lung cancer patients referred to the service between October 2010 and October 2012. Descriptive statistics and Cox proportional hazards models were used to assess whether tobacco cessation and other factors were associated with lung cancer survival through May 2014. RESULTS: Calls were attempted to 313 of 388 lung cancer patients referred to the cessation service. Eighty percent of patients (250 of 313) were successfully contacted and participated in at least one telephone-based cessation call; 40.8% (102 of 250) of persons contacted reported having quit at the last contact. After controlling for age, pack year history, sex, Eastern Cooperative Oncology Group performance status, time between diagnosis and last contact, tumor histology, and clinical stage, a statistically significant increase in survival was associated with quitting compared with continued tobacco use at last contact (HR = 1.79; 95% confidence interval: 1.14-2.82) with a median 9 month improvement in overall survival. CONCLUSIONS: Tobacco cessation among lung cancer patients after diagnosis may increase overall survival.

Acceptability, feasibility, and efficacy of a supportive group intervention for caregivers of newly diagnosed leukemia patients.

This study describes the development of a supportive group-based intervention for family caregivers of newly diagnosed leukemia patients. We assessed the feasibility, acceptability, and efficacy of the group on caregiver distress and quality of life, as well as patient distress utilizing a sequential cohort design comparing a pre-intervention control group with the intervention group. Patients and caregiver dyads completed measures at 4 time points: within 1 week of diagnosis (T1), 2-week follow-up (T2), 6-week follow-up (T3), and 12-week follow-up (T4). Significant interaction effects were observed for both caregiver distress and quality of life, whereby those receiving the intervention demonstrated improved quality of life and reduced distress over time. Overall, results support the acceptability, feasibility, and preliminary efficacy of the group intervention.

Automated tobacco assessment and cessation support for cancer patients.

BACKGROUND: Tobacco assessment and cessation support are not routinely included in cancer care. An automated tobacco assessment and cessation program was developed to increase the delivery of tobacco cessation support for cancer patients. METHODS: A structured tobacco assessment was incorporated into the electronic health record at Roswell Park Cancer Institute to identify tobacco use in cancer patients at diagnosis and during follow-up. All patients who reported tobacco use within the past 30 days were automatically referred to a dedicated cessation program that provided cessation counseling. Data were analyzed for referral accuracy and interest in cessation support. RESULTS: Between October 2010 and December 2012, 11,868 patients were screened for tobacco use, and 2765 were identified as tobacco users and were referred to the cessation service. In referred patients, 1381 of those patients received only a mailed invitation to contact the cessation service, and 1384 received a mailing as well as telephone contact attempts from the cessation service. In the 1126 (81.4%) patients contacted by telephone, 51 (4.5%) reported no tobacco use within the past 30 days, 35 (3.1%) were medically unable to participate, and 30 (2.7%) declined participation. Of the 1381 patients who received only a mailed invitation, 16 (1.2%) contacted the cessation program for assistance. Three questions at initial consult and follow-up generated over 98% of referrals. Tobacco assessment frequency every 4 weeks delayed referral in < 1% of patients. CONCLUSIONS: An automated electronic health record-based tobacco assessment and cessation referral program can identify substantial numbers of smokers who are receptive to enrollment in a cessation support service.

Distress management.

The integration of psychosocial care into the routine care of all patients with cancer is increasingly being recognized as the new standard of care. These NCCN Clinical Practice Guidelines in Oncology for Distress Management discuss the identification and treatment of psychosocial problems in patients with cancer. They are intended to assist oncology teams identify patients who require referral to psychosocial resources and to give oncology teams guidance on interventions for patients with mild distress to ensure that all patients with distress are recognized and treated.

Structuring survivorship care: discipline-specific clinician perspectives.

INTRODUCTION: Several models for survivorship care are prominent within the cancer literature; however, there is little empirical research that examines what oncology clinicians perceive to be the best approach to caring for cancer survivors, what services survivorship programs should include, and how prepared they feel to care for cancer survivors. METHODS: An IRB approved web-based survey of all clinical staff was conducted at a NCI designated comprehensive cancer center with a 49.8% response rate (N = 377). Data were summarized using frequencies and relative frequencies, and pairwise tests of statistical significance were utilized to evaluate differences between clinician type groups. RESULTS: Overall, the largest proportion of respondents preferred a disease-specific survivorship model (37.6%). This preference was specifically observed in oncology physicians and nurses. When asked where specific survivorship services should be provided, respondents indicated a preference for services directly related to survivors' medical treatment (i.e. information about late effects) to be delivered in a disease-specific survivorship clinic, and ancillary services (i.e. nutrition and fertility counseling) to be housed in a centralized comprehensive survivorship clinic. Physicians felt that they have significantly more information, training, and resources to care for cancer survivors than did oncology nurses. DISCUSSION/CONCLUSION: These results indicate that oncology clinicians prefer a combination of survivorship care delivery models where continuing medical needs are met in disease-specific clinics, and comprehensive wellness services are offered in a centralized comprehensive survivorship clinic. Results also suggest that planning for survivorship initiatives should include additional resources, education, and training for clinical staff. IMPLICATIONS FOR CANCER SURVIVORS: These findings underscore the need for a universally accepted definition of cancer survivorship, and support a model for delivering care to cancer survivors that is a blend of the disease-specific and comprehensive survivorship programs.

Medically related legal needs and quality of life in cancer care: a structural analysis.

BACKGROUND: This study investigated the interface of medical and legal systems by empirically identifying and evaluating the relation of medically related legal needs and patient quality of life and by assessing the degree to which these needs were addressed in standard patient care. METHODS: Medically related legal needs were identified in a focus group setting. These needs were subsequently sorted and rated by a sample of 50 mixed-site cancer patients (22 men and 28 women; mean age, 52 years) and subjected to multidimensional scaling and cluster analyses. Participants also rated each need in terms of the extent to which it was met in their medical care and the impact on their quality of life. RESULTS: Participants identified 30 medically related legal needs. Multivariate analyses identified 4 distinct medical-legal domains: Health Care Related, Estate Related, Financial, and Employment Related. Participants rated these domains as exerting a significant impact on quality of life. Patients reported that that these needs were not met by their current medical or supportive care. CONCLUSIONS: The present study identified a range of medically related legal needs of cancer patients. Despite their importance to patient quality of life, these needs were not met by standard medical and supportive care. Findings underscored the need to integrate legal resources into cancer care as an important component of interventions that enhance patient quality of life.

Psychological distress in long-term survivors of solid tumors diagnosed in childhood: a report from the childhood cancer survivor study.

PURPOSE: To evaluate and compare psychological distress in long-term survivors of solid tumors diagnosed in childhood and their siblings, and to identify significant correlates of psychological distress. PROCEDURE: Adult survivors (2,778) of solid tumors diagnosed in childhood and 2,925 siblings completed a long-term follow-up questionnaire assessing symptoms associated with depression, somatization, and anxiety, as well as demographic, health, and medical information. RESULTS: Overall, a large majority of siblings and survivors reported few, if any, symptoms of psychological distress. In the aggregate, solid tumor cancer survivors reported significantly higher levels of global distress as measured by the Brief Symptom Inventory (BSI-18), as well as higher levels of somatization and anxiety, when compared to siblings. However, when compared to population norms, both survivors and siblings reported lower levels of global and dimensional distress. Female gender, lower educational and income attainment, perceived poor health status and reports of current health problems all were associated with reporting psychological distress symptoms for both survivors and siblings. Among survivors, having a limb amputation was associated with reporting fewer symptoms of global and dimensional distress. CONCLUSION: Poor health status, low levels of income, education, and employment appear to be predictors of distress for survivors of solid tumors. Thus, interventions that promote health and facilitate educational advancement, income attainment and social interaction to minimize isolation and maximize social support may reduce psychological distress and promote quality of life for childhood cancer survivors.

Stress among allogeneic bone marrow transplantation patients.

BMT (bone marrow transplantation) is acknowledged as one of the most stressful treatments in modern cancer care. When investigating the impact of BMT on patients it is crucial that the analytic method employed captures direct patient perceptions, allowing the patient to define the domains under investigation. In this study, a multivariate analytic method, concept mapping (CM), was used to identify perceived stressors among 109 allogeneic BMT recipients. CM employs multidimensional scaling and hierarchical cluster analyses to empirically identify the structure underlying the investigated conceptual domain. The analyses of the BMT stress data resulted in an eight-cluster solution. The stress clusters, ranked from the most severe to the least severe, were identified as: Change of life and impact of long-lasting treatment; Side-effects; Distress related to treatment outcome and physiological status; Family-related stress; Fear of death and depressive thoughts; Other concerns; Negative social support; and Stress related to lack of information and the medical staff. A number of stressors generated by the patients were quite novel, and identified important information likely to be useful in clinical settings as well as subsequent research with this high-risk population.

Screening for distress in cancer patients: the NCCN rapid-screening measure.

The present investigation evaluated the NCCN distress management screening measure (DMSM) in a sample of 68 mixed site cancer patients. The DMSM was administered with the Brief Symptom Inventory (BSI) and the Brief Symptom Inventory-18 (BSI-18). Convergent validity was established by the moderate positive correlation between the DMSM and the BSI and BSI-18 global severity indices (r=0.59, p<0.001 and r=0.61, p<0.001, respectively). Divergent validity was demonstrated by the lower correlations between the DMSM and the BSI subscales suggestive of psychopathology (e.g. paranoid ideation, obsessive-compulsive). Receiver operative characteristic (ROC) analyses demonstrated that the DMSM has moderate ability to detect distress identified by the BSI and the BSI-18 (area under curve=0.74, p<0.001 and 0.80, respectively, p<0.01, respectively). While the ROC curves suggested that the DMSM lacks a single cutoff that maximizes sensitivity and specificity, the use of multiple cutoffs renders the DMSM an effective and very rapid screen for distress among cancer patients.

Education, employment, insurance, and marital status among 694 survivors of pediatric lower extremity bone tumors: a report from the childhood cancer survivor study.

BACKGROUND: With increasing numbers of childhood cancer survivors, direct sequelae of cancer therapy and psychosocial outcomes are becoming more important. The authors described psychosocial outcomes (education, employment, health insurance, and marriage) for survivors of pediatric lower extremity bone tumors. METHODS: The long-term follow-up study of the Childhood Cancer Survivor Study is a multiinstitutional cohort study comprising 14,054 individuals who have survived for 5 or more years after treatment for cancer diagnosed during childhood or adolescence. Baseline demographic and medical information were obtained. Six hundred ninety-four survivors had osteosarcoma or Ewing sarcoma of the lower extremity or pelvis and were classified by amputation status and by age at diagnosis. The median age at diagnosis was 14 years old with a median of 16 years of follow up since diagnosis. Demographic characteristics were used to analyze the rates of psychosocial outcomes. RESULTS: Amputation status and age at diagnosis did not significantly influence any of the measured psychosocial outcomes. Education was a significant positive predictor of employment, having health insurance, and being currently in their first marriage. Male gender predicted ever being employed and female gender predicted having health insurance and marriage. When compared with siblings, amputees had significant deficits in education, employment, and health insurance. CONCLUSIONS: Overall, no differences between amputees and nonamputees were found. However, gender and education play a prominent role. When compared with siblings, amputees in this cohort may benefit from additional supports.

Utilization of special education services and educational attainment among long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

BACKGROUND: The objective of the current report was to compare the self-reported rates of special education (SE) and educational attainment among specific groups of childhood cancer survivors and a random sample of sibling controls. METHODS: The Childhood Cancer Survivor Study is a retrospective cohort of individuals who were diagnosed with a cancer in childhood and survived at least 5 years postdiagnosis. This analysis includes 12,430 survivors and 3410 full siblings. Reported use of SE services and educational attainment were analyzed within subgroups defined by type of cancer, age at diagnosis, and type of treatment. RESULTS: The use of SE services was reported in 23% of survivors and 8% of siblings, with the greatest differences observed among survivors who were diagnosed before age 6 years, most notably survivors of central nervous system (CNS) tumors (odds ratio [OR], 18.8; 95% confidence interval [95%CI], 15.01-23.49), leukemia (OR, 4.4; 95%CI, 3.75-5.16), and Hodgkin disease (OR, 4.4; 95%CI, 2.64-7.24). It was found that intrathecal methotrexate (IT MTX) and cranial radiation (CRT), administered alone or in combination, significantly increased the likelihood that a survivor would use SE (IT MTX only: OR, 1.3; 95%CI, 1.09-1.78; CRT only: OR, 7.2; 95%CI, 6.14-8.39; IT MTX and CRT combined: OR, 2.6; 95%CI, 2.30-2.95). A positive dose response was identified between higher doses of CRT and use of SE. It was determined that survivors of leukemia (OR, 1.6; 95%CI, 1.23-2.16), CNS tumors (OR, 2.7; 95%CI, 1.92-3.81), non-Hodgkin lymphoma (OR, 1.8; 95%CI, 1.15-2.78), and neuroblastoma (OR, 1.7; 95%CI, 1.14-2.61) were significantly less likely to finish high school compared with siblings; however, when survivors received SE services, risk estimates approximated those of the sibling SE population. CONCLUSIONS: Children who are diagnosed with cancer should be followed closely during and after treatment to identify early signs of learning disabilities and to maximize intervention strategies for the successful completion of scholastic goals.