A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions.

BACKGROUND: Policy and research related to transition to adult care for adolescents and young adults (AYAs) has focused primarily on patient age, disease skills and knowledge. OBJECTIVE: In an effort to broaden conceptualization of transition and move beyond isolated patient variables, a new social-ecological model of AYA readiness for transition (SMART) was developed. METHODS: SMART development was informed by related theories, literature, expert opinion and pilot data collection using a questionnaire developed to assess provider report of SMART components with 100 consecutive patients in a childhood cancer survivorship clinic. RESULTS: The literature, expert opinion and pilot data collection support the relevance of SMART components and a social-ecological conceptualization of transition. Provider report revealed that many components, representing more than age, disease knowledge and skills, related to provider plans for transferring patients. CONCLUSIONS: SMART consists of inter-related constructs of patients, parents and providers with emphasis on variables amenable to intervention. Results support SMART's broadened conceptualization of transition readiness and need for assessment of multiple stakeholders' perspectives of patient transition readiness. A companion measure of SMART, which will be able to be completed by patients, parents and providers, will be developed to target areas of intervention to facilitate optimal transition readiness. Similar research programmes to establish evidence-based transition measures and interventions are needed.

An experimental protocol for fertility preservation in prepubertal boys recently diagnosed with cancer: a report of acceptability and safety.

BACKGROUND: Gonadal damage is a consequence of therapy for pediatric malignancies. Prepubertal males have no semen or mature spermatozoa, posing a challenge for fertility preservation. Testicular tissue cryopreservation is a potential option but is still experimental. We report on a pilot protocol that offered testicular biopsy cryopreservation to families of prepubertal boys with newly diagnosed malignancy. The aims were to determine the acceptability and safety of this procedure. METHODS: Parents of prepubertal boys with diagnoses at highest risk for treatment-related gonadal damage were offered the option of testicular cryopreservation. Half of the biopsy was frozen for the subject's potential future use and the remainder used for research. Data on negative intraoperative and/or 7 day post-operative sequelae of testicular biopsies were assessed. Two to four weeks later, parents were asked to complete a questionnaire on factors influencing their decision to have the biopsy or not. RESULTS: Since January 2008, 24 boys have met the eligibility criteria but three required immediate treatment and were excluded. Sixteen of 21 families (76%) consented to testicular biopsy, indicating the prospective acceptability of this option to parents of boys aged 3 months to 14 years; 14 underwent the procedure without any negative intra- or post-operative sequelae. Although the time at diagnosis is stressful, families can give thoughtful consideration to this option. Factors such as religion, finance, ethics and the experimental nature of cryopreservation did not play a major role in decision-making. CONCLUSIONS: Parents of prepubertal boys with cancer are willing to pursue testicular tissue cryopreservation at diagnosis, and testicular biopsy caused no acute adverse effects.

Corrected QT interval prolongation in anthracycline-treated survivors of childhood cancer.

PURPOSE: Comprehensive cardiac evaluations are currently recommended for all anthracycline-treated patients to detect subclinical cardiac failure. A screening test is needed that would easily and inexpensively identify patients who are at risk for late cardiac decompensation. METHODS: We routinely reviewed the ECG and echocardiogram (ECHO) results of 52 of 56 anthracycline-treated long-term survivors of childhood cancer who had received > or = 100 mg/m2 of ANTH (ANTH = 1 mg/m2 of doxorubicin), and who were not in clinical heart failure. Exercise testing was performed in eight patients with a corrected QT interval (QTc) of > or = 0.43. RESULTS: Zero of 15 patients (without chest radiation) who received less than 300 mg/m2 of ANTH versus six of 22 who received > or = 300 mg/m2 of ANTH had a QTc > or = 0.43 (P = .03). Three of 15 patients (with chest radiation) who received less than 300 mg/m2 of ANTH versus 12 of 22 who received > or = 300 mg/m2 of ANTH had a QTc > or = 0.43 (P = .03). For all patients (including those with chest radiotherapy), zero of 19 who received less than 300 mg/m2 of ANTH versus eight of 33 who received > or = 300 mg/m2 of ANTH had a QTc of > or = 0.45 (P = .025). Three of 19 who received less than 300 mg/m2 of ANTH versus 19 of 33 who received > or = 300 mg/m2 of ANTH had a QTc of > or = 0.43 (P = .003). One patient had decreased fractional shortening (FS) and QTc prolongation. Cardiac decompensation (with a FS of 24%) occurred with propranolol in a patient with previously normal FS but prolonged QTc. With exercise, the QTc became further prolonged in all four patients with a QTc of 0.44 to 0.46 and in two of four patients with a QTc of 0.43. CONCLUSION: Prolongation of the QTc, a measure of myocardial repolarization, may reflect injury to myocardial cells. QTc prolongation may be predictive of an increased risk of late cardiac decompensation. If the utility of the QTc measure is confirmed, screening for evidence of myocardial damage can be easily and inexpensively performed by oncologists and primary caretakers.

Symptoms of posttraumatic stress in young adult survivors of childhood cancer.

PURPOSE: This study assessed the prevalence of posttraumatic stress symptoms in young adult survivors of childhood cancer and the association of posttraumatic stress with anxiety, adjustment, perceptions of illness and treatment, and medical data extracted from oncology records. PATIENTS AND METHODS: Seventy-eight young adults (ages 18 to 40 years) who had been treated for childhood cancer completed questionnaires and psychiatric interviews assessing posttraumatic stress, anxiety, perceptions of their illness and treatment, and symptoms of psychologic distress. Data on treatment intensity and severity of medical late effects were collected via chart review. RESULTS: Of the patient sample, 20.5% met American Psychiatric Association Diagnostic and Statistical Manual criteria for posttraumatic stress disorder (PTSD) at some point since the end of their treatment. Clinically significant levels of intrusive (9%) and avoidant (16.7%) symptoms were reported. Participants also reported elevated state and trait anxiety. Participants with PTSD reported higher perceived current life threat, more intense treatment histories, and higher (and clinically significant) levels of psychologic distress than those who did not have PTSD. CONCLUSION: One-fifth of this sample of young adult survivors of childhood cancer met criteria for a diagnosis of PTSD, with clinically significant symptoms of intrusion and avoidance reported. As in other samples, PTSD in young adult survivors was associated with anxiety and other psychologic distress. Survivors' perceptions of treatment and its effects were more highly associated with posttraumatic stress than were more objective medical data. The data suggest that cancer-related posttraumatic stress may emerge in young adulthood and may affect the achievement of developmental milestones and orientation toward health care.

Cognitive late effect factors related to decision making and risk behaviors of cancer-surviving adolescents.

The purpose of this correlational study was to examine factors related to cognitive late effects of treatment that may be predictors of decision making and risk behaviors for cancer-surviving adolescents. A convenience sample of 52 survivors (ages 14-19 years, disease-free for 5 years, no treatment for 2 years, and with all types of cancer except primary brain tumors) participated in this study at two regional survivor follow-up clinics. A medical record review, a semistructured interview with the teen, and intelligence testing on a separate day were used to collect data. A history of cancer therapy threatening cognitive function (defined as > or = 18 gy of radiotherapy, intrathecal or high-dose systemic methotrexate, or both) was a marginally significant predictor of poorer-quality decision making in the first regression model. Poorer-quality decision making was a significant predictor of one or more risk behaviors in the second model. Younger age at initial treatment and lower cognitive ability (full-scale IQ) were not significant predictors for either of the models. There were no significant differences for the Wechsler IQ subtests related to abstract and analytic ability by cognitive threat status. Post hoc analysis indicated that lack of sensitivity to change of the Wechsler IQ measure may have affected outcomes. Abstract and/or analytic ability may be important links for decision making and risk behaviors of teen survivors, thus warranting further examination within a larger sample. Intervention to improve decision making needs to be provided for teen survivors; this may be true especially when there is a history of therapy threatening cognitive function.

Risk taking and decision making of adolescent long-term survivors of cancer.

Late effects of multi-modal treatments for long-term survivors of childhood cancer may affect their ability to make decisions related to risk behaviors. Adolescent survivors may be at greater risk than those in the general population because of late effects of organ compromise and oncogenesis. The purposes of this study were to (1) describe the prevalence of risk behaviors among adolescent long-term survivors of cancer; (2) describe these survivors' perceptions of the quality of their decision making; (3) test the hypothesis that the poorer the decision-making quality, the more risk behaviors exhibited by an adolescent long-term survivor; and (4) examine the effects of central nervous system (CNS) prophylactic leukemia therapy and academic achievement problems on quality of decision making and risk behaviors. In this descriptive study, a semi-structured interview was used at the time of the yearly clinic visit. The sample consisted of 36 long-term survivors who were disease-free for five years, had no medical treatment for two years, and were 14-19 years of age. The major conclusions drawn regarding adolescent long-term survivors were that (1) although there was a trend toward higher experimental use of some risk behaviors, essentially, the prevalence rates were comparable to those of the general population; (2) some were good decision makers; however, quality decision-making skills were poorly practiced by the majority; (3) with better decision-making quality, fewer risk behaviors were exhibited; and (4) prior CNS prophylactic leukemia therapy and academic achievement problems may be associated with poor quality decision making.

Testing the effects of a decision-making and risk-reduction program for cancer-surviving adolescents.

PURPOSE/OBJECTIVES: To test the effects of a decision-making and risk-reduction program for cancer-surviving adolescents. DESIGN: Prospective clinical trial using a quasi-experimental pretest/post-test design with repeated measures. SETTING: Two survivor follow-up clinics and a camp for children and adolescents with cancer located in upstate New York. SAMPLE: A convenience sample of 64 survivors (13-21 years of age). The intervention group consisted of 21 survivors who attended a workshop, and the comparison group consisted of 43 survivors who did not attend the workshop. METHODS: Intervention-integrated information specific to survivorship, decision-making skills, risk behaviors, and social support from peers and healthcare professionals. The educational component of the program lasted one day (five one-hour units), and the social component lasted overnight. A single, semistructured interview at the time of the previous yearly evaluation visit was used for baseline data. Testing was conducted during home visits at 1, 6, and 12 months. MAIN RESEARCH VARIABLES: Decision making, risk motivation, and risk behaviors (i.e., smoking, alcohol use, and illicit drug use). FINDINGS: The effect of the intervention for improving decision making was significant at 1-month postintervention, marginally significant at 6-months postintervention, and highly significant at 12-months postintervention. The effect of the intervention for motivation toward alcohol use was significant at 1-month postintervention and marginally significant at 6-months postintervention; however, the intervention had no effect on smoking motivation at any of the three time intervals. The effect of the intervention for improving smoking behavior was marginally significant at 6-months postintervention and was marginally significant at 12-months postintervention for alcohol use. CONCLUSIONS: The intervention had a dampening effect on the upward trajectory of substance use, a path that is well-known to increase with age for both genders in the general population. This short, five-hour program for improving decision making and affecting substance use of teen survivors shows promise; however, a larger sample is needed to enhance findings. IMPLICATIONS FOR NURSING PRACTICE: Besides tailoring risk-behavior information based on actual or potential late effects of treatment to each teen survivor during follow-up visits, oncology professionals need to provide booster programs to refine decision-making skills within meaningful decision context for teen survivors as a means of reducing risk behaviors.

Transitional care for young adult survivors of childhood cancer.

OBJECTIVES: To review the obstacles and barriers to providing optimal care to young adult cancer survivors and discuss the transition from pediatric to adult health care system. DATA SOURCES: Published articles and textbook chapters. CONCLUSIONS: More than 70% of children diagnosed with cancer between birth and 14 years of age will be cured of their primary disease. Because of multiple physical and psychosocial risk factors imposed by their therapy and previous disease, childhood cancer survivors require life-long care. IMPLICATIONS FOR NURSING PRACTICE: Health care providers must be aware of the unique needs of these individuals for life-long follow-up and assist in facilitating this transition process.

Pediatric nurse practitioners specializing with survivors of childhood cancer.

The evolution of the role of the pediatric nurse practitioner in oncology specializing in the care of childhood cancer survivors is described, with certain aspects of the role solidified or expanded and new functions added. The early concept of the role included three interdependent functions: (a) clinician/caregiver, (b) educator, and (c) researcher. The functions of specialty care provider and educator remain strong; the role of researcher has been expanded, and new role components, clinical/program manager and consultant, have been added. The central focus for the pediatric nurse practitioner in oncology is the survivor and family, which is extended to the clinic population and related groups by the blending of the pediatric nurse practitioner and clinical nurse specialist roles. Any role function on behalf of this clinical population should be assumed as necessary to provide comprehensive care.

Factors related to decision making and substance use in adolescent survivors of childhood cancer: a presenting clinical profile.

BACKGROUND: Adolescent survivors of childhood cancer are more vulnerable to the consequences of health risk behaviors because of the late effects of their disease and its treatment. Decision making related to risk behaviors is important as they have reached an age during which initiation of substance use risk behavior is common. OBJECTIVE: Factors associated with decision making and substance use behaviors (smoking, alcohol use, and illicit drug use) were identified among adolescent survivors of childhood cancer, the role of cognitive function was examined, and their rates of substance use behaviors were compared to a sample from the general population. METHODS: A cohort of 243 adolescent survivors, ages 14-19 years, participated who were recruited from three cancer centers (St. Jude Children's Research Hospital, Hackensack University, and Long Beach Medical Center). A cross-sectional survey was used to assess cognitive and psychosocial factors for a presenting clinical profile to predict quality decision making and substance use behaviors. Validated measures using online data entry were obtained at the time of their annual visit for evaluation of late effects of treatment. Cancer and treatment factors were abstracted from the medical record. Eight factors (nine for substance use risk behavior) were examined in two regression models, quality decision making and substance use. RESULTS: In the model to predict poor-quality decision making for this cohort, gender and risk motivation (a surrogate for resiliency to social influence) were each significant predictors, with male gender and less resiliency each associated with poor decision making. Significant predictors of lifetime substance use were older presenting age, lower resiliency to social influence, poorer abstract ability (representing executive function impairment), history of current school problems, and negative substance use risk behavior modeling by household members and closest friend; CNS-associated late effects were only marginally associated. For current substance use, three factors remained significant in this cohort: older presenting age, lower resiliency, and negative risk behavior modeling. IMPLICATIONS FOR CANCER SURVIVORS: Study results characterize a presenting clinical profile for adolescent survivors with poor-quality decision making regarding substance use risk behaviors that will be helpful to health professionals counseling teen survivors about the impact of risk behaviors on disease-and treatment-related late effects.

Establishing comprehensive specialty follow-up clinics for long-term survivors of cancer. Providing systematic physiological and psychosocial support.

Late effects of multi-modality treatments may result in organ compromise or new primary cancers for a growing population of long-term survivors of cancer. It is estimated that there will be 180,000-220,000 childhood cancer survivors living in the United States in the year 2000. This number of survivors warrants program planning specific to their needs. Add to this the number of patients diagnosed with cancer as adults who have reached 5-year survival status, and the total population of long-term survivors of cancer justifies special programs to deal with the issues of survivorship. This paper addresses several questions: (a) What are the needs of cancer survivors? (b) Can these needs be met through specialty survivor clinics? (c) What are the benefits of survivor follow-up clinics? (d) Should survivor clinics for children and adults become standard care? The clinic structure and objectives, and daily procedures for a follow-up clinic in New York State are presented as one model of care. Benefits for a free-standing clinic also are discussed as well as financial considerations and directions for research.

Decision making and risk behaviors of cancer-surviving adolescents and their peers.

The specific aims of this descriptive, comparative study were (1) to compare the decision-making quality and prevalence of risk behaviors (smoking, alcohol consumption, and illicit drug use) between 52 cancer-surviving adolescents and their peers; (2) to compare the relationship of decision-making quality and risk behavior prevalence in a subset of survivors who had a history of therapy with cognitive threat due to late effects of treatment to those without cognitive threat; and (3) to test the hypothesis that the higher the number of quality decision criteria adhered to, the fewer the risk behaviors exhibited by cancer-surviving adolescents. Findings indicated that the majority of teen survivors reported practicing poor-quality decision making for five of the seven criteria (peers, four of seven). There were no significant differences in decision making between teen survivors and their peers nor between survivors with cognitive threat and those without. Peers were significantly more likely to engage in one or more risk behaviors than teen survivors, but comparisons with two normative samples (state and national) revealed that cigarette smoking and alcohol use of the teen survivors were comparable with the general population. There was no significant difference in risk behaviors between survivors with a history of therapy with cognitive threat and those without. Survivors who reported higher adherence to quality decision criteria were less likely to report exhibiting risk behaviors than those with poorer decision making. Using the context of late effects due to cancer treatment, oncology nurses need to provide guidance in quality decision making as well as in risk behavior education.

The medical consequences of cure.

As more children are now being cured of cancer, increasing attention needs to be focused on the long-term sequelae of cancer therapy, principally late-appearing second cancers and damage to organ systems. To this end, the authors have established an oncology follow-up clinic specifically designed to examine former pediatric cancer patients who are likely to be cured. Patients receive a physical examination and appropriate organ function studies based upon initial diagnosis, pre-existing conditions, treatment received, and any complications experienced during the course of therapy. The late effects noted among the first 200 such survivors examined reveal a high proportion of severe sequelae secondary to radiation therapy in early childhood. Second malignant neoplasms may also be related to alkylating agent chemotherapy and to genetic conditions. Although certain therapeutic practices have improved the outlook for these patients, and, in some cases, reduction in intensity of therapy has been found to be effective, increased survival and newer treatment modalities have made extended follow-up increasingly necessary in order to detect and possibly prevent the occurrence of such late effects.

Providing quality care in childhood cancer survivorship: learning from the past, looking to the future.

As we move into the 21st century, we are faced with an increasing number of childhood cancer survivors who are living into their middle adult years and beyond. Providing appropriate, comprehensive follow-up care is a challenge for health care providers and one that can be met by developing quality follow-up programs for all childhood cancer survivors. The focus of these programs should be to educate these survivors on strategies to maximize their health and well being. This article discusses the evolution of survivor clinics, strategies for developing a quality program, and the role of nursing in the care of childhood cancer survivors.

The relationship of resiliency to decision making and risk behaviors of cancer-surviving adolescents.

Adolescents with a history of cancer frequently engage in risk behaviors. The purpose of this correlational study was to explore factors that affect decision making and risk behaviors (smoking, alcohol use, and illicit drug use) of cancer-surviving adolescents. A sample of 52 teen survivors participated at two cancer centers. In addition to a medical record review and IQ testing, several psychosocial measures were administered in a semistructured interview with the teen survivor. Three antecedent factors (cognitive function, resiliency, and role modeling of risk behaviors by parents and peers) were examined in a hierarchical regression model to predict decision making. These same factors, with an additional mediating variable (decision making), were examined in a hierarchical logistic regression model to predict risk behaviors in teen survivors. In the decision-making model, adjusted for demographic covariates, resiliency was a marginally significant predictor of decision making. As non-resiliency increases, quality of decision making may decrease for teen survivors. In the model to predict risk behaviors, four factors (cognitive function, resiliency, role modeling, and decision making) were added to the basic model, controlling for the same covariates. Resiliency and decision making were highly significant predictors of one or more risk behaviors. Non-resilient teen survivors with poor-quality decision making are more likely to engage in risk behaviors of substance use and need intervention that is aimed at improving decision-making skills to reduce these behaviors.

Posttraumatic stress disorder: understanding the psychosocial impact of surviving childhood cancer into young adulthood.

Little research has been done to explore how the psychological symptoms of child and adolescent cancer survivors change in the decades following successful treatment. This article examines these changes with a focus on the utility of a posttraumatic stress framework for understanding the long-term coping issues that individuals face as they mature and make transitions to young adulthood. First, the literature supporting the use of a posttraumatic stress framework in child and adolescent survivors is reviewed. Developmental contributions to changes and increases in posttraumatic symptomatology during young adulthood are then discussed and posttraumatic symptoms most often seen in this group are presented. Preliminary research with young adult survivors is also reviewed and discussed as support for a posttraumatic stress framework with this population. Ongoing research efforts aimed at elaborating on this framework are described. Finally, clinical implications for health care providers are explored, and guidelines for assessing the impact of posttraumatic stress on young adults' use of health care resources are offered.