Engaging Latino Adolescent and Young Adult (AYA) Cancer Survivors in Their Care: Piloting a Photonovela Intervention.

Latino adolescent and young adult (AYA) cancer survivors represent a growing population given the changing demographics in the USA. They experience significant healthcare disparities and barriers that warrant age-specific and culturally appropriate interventions to improve their clinical and psychosocial outcomes. This single-arm pilot study evaluated a novel intervention - a photonovela - on its ability to educate Latino AYA survivors and their family members and engage them in survivorship care. Ninety-seven participants (Latino AYA survivors and their family members) were recruited for this study. Three surveys assessing survivorship care confidence, cancer stigma, and survivorship care knowledge were administered to families before they received the photonovela, after the intervention, and at a booster phone call session. Mixed effects models were used to evaluate differences in scores at the three time points while accounting for repeated measures and family clustering. Results show that the photonovela was effective in improving survivorship care confidence and knowledge of Latino AYA survivors and their families. This pilot study indicates that the photonovela has potential to be a useful intervention for improving confidence and knowledge regarding the need to seek survivorship care for Latino AYA cancer survivors.

The impact of caregiver post-traumatic stress and depressive symptoms on pediatric transplant outcomes.

PTSS as well as symptoms of depression have been reported in children who experience a serious medical adversity as well as their caretakers. The adverse effects of PTSS, when experienced by the patients, on medical outcomes have been clearly documented. However, the impact of those symptoms, if any, when experienced by the caretakers on child outcomes has not been investigated prospectively. We evaluated whether caregiver PTSS and depression symptoms predict adherence to medications and medical outcomes in a prospective multisite study. Four hundred children participated in MALT. Caretaker PTSS were assessed by the IES and depressive symptoms by CES-D. During 2 years of follow-up, the MLVI was used to determine adherence. Centrally read, biopsy-confirmed organ rejection was the primary medical outcome. IES scores were not associated with either adherence or rejection outcomes. In contrast, there were significant correlations between CES-D (depression) scores and lower adherence, r = .13, P < .001, and a trend toward higher scores on the CES-D among those whose children had experienced rejection, 12.4 (SD = 10.9) versus 9.1 (SD = 8.6), P = .077. Caregivers' PTSS were not a risk factor for poor child outcomes in this cohort, whereas depression symptoms were associated with non-adherence and possibly increased rates of rejection. Further study can validate if caregivers' depression as opposed to PTSS confers greater risk and should be a focus during the clinical care of medically ill children.

The use of mobile technology and peer navigation to promote adolescent and young adult (AYA) cancer survivorship care: results of a randomized controlled trial.

PURPOSE: Adolescent and young adult (AYA) cancer survivors experience unique barriers that compromise receipt of survivorship care; therefore, development of innovative educational interventions to improve rates of AYA survivorship care is needed. The efficacy of text-messaging and peer navigation interventions was compared to standard-of-care survivorship educational materials to increase AYAs' (1) late effects knowledge and (2) knowledge, attitudes, and self-efficacy towards seeking survivor-focused care. METHODS: This was a three-armed, prospective, randomized controlled trial with one control group and two intervention groups. The control group received current standard-of-care educational materials. One intervention group participated in a text-messaging program, and the second participated in a peer navigator program. Participants completed pre- and post-intervention questionnaires. Study outcome variables were quantified using Fisher exact tests, two-sample t tests, exact McNemar tests, conditional logistic regression models, and analysis of covariance. RESULTS: Seventy-one survivors completed the study (control n = 24; text-messaging n = 23; peer navigation n = 24). Late effects knowledge was high at baseline for all groups. The text-messaging group had increased survivorship care knowledge compared to the control group (p < 0.05); the peer navigation group had increased survivorship care self-efficacy compared to the control group; p < 0.05. Both intervention groups showed increased attitudes towards seeking survivor-focused care compared to the control group (text-messaging p < 0.05; peer navigation p < 0.05). CONCLUSIONS: Each intervention demonstrated significant benefits compared to the control group. IMPLICATIONS FOR CANCER SURVIVORS: Given the preliminary effectiveness of both interventions, each can potentially be used in the future by AYA cancer survivors to educate and empower them to obtain needed survivorship care.

Alcohol consumption behaviors and neurocognitive dysfunction and emotional distress in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

AIMS: To estimate the level of alcohol consumption behaviors in adult survivors of childhood cancer and to test associations between alcohol consumption behaviors and symptoms of neurocognitive impairment and emotional distress. DESIGN: Retrospective cohort study with longitudinal follow-up of self-reported health outcomes. SETTING: Childhood Cancer Survivor Study (CCSS), a 26-center study of ≥ 5-year survivors of childhood cancer diagnosed ≤ 21 years of age between 1970 and 1986 in the United States and Canada. PARTICIPANTS: A total of 4484 adult survivors of childhood cancer [mean (standard deviation) age at evaluation = 34.8 (6.1) years; time from diagnosis = 24.8 (4.4) years] and 1651 sibling controls who completed surveys reporting on alcohol use, neurocognitive impairment and emotional distress. MEASUREMENTS: Survivor report of alcohol use included age at drinking initiation and quantity and frequency of alcohol consumption. Neurocognition was assessed using the CCSS Neurocognitive Questionnaire. Emotional distress symptoms were measured using the Brief Symptoms Inventory-18 and the Posttraumatic Stress Diagnostic Scale. FINDINGS: After adjustment for childhood cancer treatment exposures, including cranial radiation therapy, drinking initiation prior to 18 years of age was associated with 30% increased risk of subsequent memory problems [risk ratio (RR) = 1.3; 95% confidence interval (CI) = 1.1-1.5]. Younger age at drinking initiation was associated with future risk of depression (RR = 1.3; 95% CI = 1.1-1.5), anxiety (RR = 1.6; 95% CI = 1.3-2.1), and somatization (RR = 1.2; 95% CI = 1.1-1.4). Persistent heavy/risky drinking was associated with 80% increased risk of persistent psychological distress (RR = 1.8, 95% CI = 1.4-2.3). CONCLUSIONS: Drinking initiation during adolescence is associated with modest increased risk for memory impairment and emotional distress in adult survivors of childhood cancer.

Relations between posttraumatic stress and posttraumatic growth in long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

OBJECTIVE: Contemporary models of trauma suggest that posttraumatic stress and growth should be related and that symptoms of stress resulting from a perceived trauma (e.g., childhood cancer) are prerequisite for posttraumatic growth (PTG) to occur. However, empirical data regarding the relationship of posttraumatic stress and growth have been equivocal. The purpose of this study is to examine the relationship between posttraumatic stress symptoms (PTSS) and PTG among adult survivors of childhood cancer. METHODS: Survey methods were used to collect data from 6,162 survivors participating in the Childhood Cancer Survivor Study (CCSS). Nonparametric correlation was examined pairwise between PTG and PTSS using Spearman's correlation coefficient with 95% confidence intervals, with nonlinear canonical correlation analysis being conducted to examine relationships between subscales. A multivariable partial proportional odds model was also fit for PTG total quartiles focusing on associations with PTSS total quartiles while adjusting for sociodemographic and medical variables. RESULTS: Examination of unadjusted PTSS and PTG total scores revealed a Spearman correlation of 0.11 (p < .001), with coefficients ranging from 0.03 to 0.17 between total and subscale scores. The nonlinear canonical correlation analyses resulted in two dimensions with eigenvalues of 0.15 and 0.14, resulting in a fit value of 0.30 and evidence that little variability in the data (15%) was explained by the weighted combinations of the variables. CONCLUSIONS: Although statistically significant, these results do not indicate a robust relationship between PTSS and PTG among adult survivors of childhood cancer. Theories suggesting that PTSS is a prerequisite for PTG should be reconsidered.

Perceived positive impact of cancer among long-term survivors of childhood cancer: a report from the childhood cancer survivor study.

OBJECTIVE: Investigations examining psychosocial adjustment among childhood cancer survivors have focused primarily on negative effects and psychopathology. Emergent literature suggests the existence of positive impact or adjustment experienced after cancer, as well. The purpose of this study is to examine the distribution of Perceived Positive Impact (PPI) and its correlates in young adult survivors of childhood cancer. METHODS: 6425 survivors and 360 siblings completed a comprehensive health survey, inclusive of a modified version of the Post-traumatic Growth Inventory (PTGI) as a measure of PPI. Linear regression models were used to examine demographic, disease and treatment characteristics associated with PPI. RESULTS: Survivors were significantly more likely than siblings to report PPI. Endorsement of PPI was significantly greater among female and non-white survivors, and among survivors exposed to at least one intense therapy, a second malignancy or cancer recurrence. Survivors diagnosed at older ages and fewer years since diagnosis were more likely to report PPI. Income, education and marital/relationship status appeared to have varied relationships to PPI depending upon the subscale being evaluated. CONCLUSIONS: The existence and variability of PPI in survivors in this study suggest that individual characteristics, inclusive of race, gender, cancer type, intensity of treatment, age at diagnosis and time since diagnosis, have unique and specific associations with different aspects of perceived positive outcomes of childhood cancer.

Defining medical posttraumatic stress among young adult survivors in the Childhood Cancer Survivor Study.

OBJECTIVE: To examine the implications of use of differential thresholds for studying medical Posttraumatic Stress Disorder (PTSD). METHODS: Self-report data from 6,542 young adult survivors of childhood cancer and 374 of their siblings were used to create clearly differentially defined groups to compare prevalence, correlations and predictors of posttraumatic stress. RESULTS: Prevalence of posttraumatic stress in survivors compared to siblings differed by definition used, ranging from an odds ratio of 4.21 (95% CI 2.11-8.38) when posttraumatic stress was defined as meeting full symptoms plus functional impairment to 1.42 (95% CI 0.79-2.56) for partial symptoms with functional impairment. Re-experiencing symptoms did not substantially contribute to the ability to identify functional impairment and emotional distress. Although most of the variables associated with posttraumatic stress symptoms and impairment were consistent across definitions of PTSD, marital status and employment demonstrated nonproportional relationships. CONCLUSIONS: Choice of the definition used in studying posttraumatic stress after serious illness alters not only epidemiological findings, but also associations with correlates and predictors. This is important in the current debate about the criteria for PTSD in the upcoming DSMV. Further study is needed to determine if these findings are applicable to people exposed to other types of traumatic events.

Prevalence and predictors of posttraumatic stress disorder in adult survivors of childhood cancer.

OBJECTIVE: This study compared the prevalence of symptoms of posttraumatic stress disorder (PTSD), with functional impairment and/or clinical distress, among very long-term survivors of childhood cancer and a group of healthy siblings. METHODS: A total of 6542 childhood cancer survivors >18 years of age who received diagnoses between 1970 and 1986 and 368 siblings of cancer survivors completed a comprehensive demographic and health survey. RESULTS: A total of 589 survivors (9%) and 8 siblings (2%) reported functional impairment and/or clinical distress in addition to the set of symptoms consistent with a full diagnosis of PTSD. Survivors had more than fourfold greater risk of PTSD, compared with siblings (odds ratio [OR]: 4.14 [95% confidence interval [CI]: 2.08-8.25]). With controlling for demographic and treatment variables, increased risk of PTSD was associated with educational level of high school or less (OR: 1.51 [95% CI: 1.16-1.98]), being unmarried (OR: 1.99 [95% CI: 1.58-2.50]), having annual income below $20,000 (OR: 1.63 [95% CI: 1.21-2.20]), and being unemployed (OR: 2.01 [95% CI: 1.62-2.51]). Intensive treatment also was associated with increased risk of full PTSD (OR: 1.36 [95% CI: 1.06-1.74]). CONCLUSIONS: PTSD was reported significantly more often by survivors of childhood cancer than by sibling control subjects. Although most survivors apparently are faring well, a subset reported significant impairment that may warrant targeted intervention.

Post-traumatic stress response to life-threatening illnesses in children and their parents.

Symptoms of PTSD have been reported in response to a variety of life-threatening medical illnesses and injuries in adults and children. Emerging data suggest that children often experience medical treatment and hospitalization as traumatic, putting caregivers and medical personnel in the role of the unintended accomplice. Adequate pain control by pharmacologic and behavioral means; child and family psychological support using evidence-based CBT, dynamic psychotherapy, and other techniques; and meticulous attention to communication via a team-based approach are the cornerstones of pediatric palliative care in general and PTSD prevention and treatment in particular. Emerging evidence suggests that PTSD in life-limiting pediatric illness can be ameliorated, if not prevented, and treated when it occurs, contributing materially to the quality of life of a child and family. A landmark finding of PTSD research with medically ill children and their families is that parents are at least as symptomatic, or more, as their children, underlining the importance of a family-directed approach addressing every family mem-ber. Pediatric caregivers increasingly recognize their therapeutic role when curative therapy is no longer possible is as pivotal as in the setting of acute illness.

Complementary therapies and childhood cancer.

BACKGROUND: The use of complementary and alternative therapies by children with cancer is common. Up to 84% of children have used complementary therapies along with conventional medical treatment for cancer. METHODS: We reviewed the PubMed and CINAHL databases for studies published between 1994 and 2004 on the use of complementary and alternative therapies by children with cancer and reports from any publication year through 2004 of clinical trials involving complementary and alternative therapies for children with cancer. RESULTS: Fourteen studies were retrieved reporting the results of survey or interview data collected from parents on children's use of complementary and alternative therapies during or after childhood cancer. Across studies, the use of such therapies ranged from 31% to 84%. Common reasons for using complementary and alternative therapies were to do everything possible for their child, to help with symptom management, and to boost the immune system. Many parents indicated they also hoped to treat or cure the cancer. In most cases, the child's treating physician had not been informed of the child's use of complementary and alternative therapies. CONCLUSIONS: Use of complementary therapies by children with cancer is common, although methodological variations limit the ability to compare results across studies. Treating physicians often do not know the child is using complementary therapies in addition to medical treatments. The scientific evidence is limited regarding the effects and mechanisms of action of complementary or alternative therapies, but research is being conducted on these topics.

Traumatic stress symptoms in adolescent organ transplant recipients.

OBJECTIVE: Symptoms of posttraumatic stress disorder (PTSD) after life-threatening medical illness have been found to predict poor outcome in preliminary studies of adults and children. However, these symptoms are rarely recognized in general medical or pediatric settings. Here we report on the first large investigation to assess prevalence and correlates of self-reported symptoms of posttraumatic stress in a nonreferred sample of adolescent liver, heart, and kidney transplant recipients. METHODS: One hundred four adolescents, ages 12 to 20 years (mean: 15.7; SD: 2.1), completed and returned the University of California, Los Angeles, PTSD Index for the Diagnostic and Statistical Manual of Mental Disorders. All participants were at least 1 year post-initial transplant and were fluent speakers of English and/or Spanish. RESULTS: More than 16% of the adolescents met all symptom criteria for PTSD, and an additional 14.4% met 2 of 3 symptom-cluster criteria. Regression analysis indicated no effect of gender, ethnicity, age at interview, organ type, time since transplant, or age at transplant. CONCLUSIONS: As has been found with other life-threatening pediatric conditions, solid organ transplantation can precipitate symptoms of posttraumatic stress. Symptoms are not predicted by what would be considered objective factors increasing life threat, suggesting a greater salience of subjective appraisal of threat, as has been seen in studies of childhood cancer survivors.

Preliminary evidence for lymphocyte distribution differences at rest and after acute psychological stress in PTSD-symptomatic women.

This study investigated circulating natural killer (NK), CD4+ and CD8+ cells in response to acute psychological challenge among mothers of child cancer survivors with and without posttraumatic stress symptoms (PTSS). Control mothers of healthy children (n=9) were compared to 17 cancer mothers with (PTSS: n=9) and without PTSS (No PTSS: n=7) under conditions of rest, after a generic stressor (MAT: mental arithmetic task) and a personalized stressor (script-driven trauma imagery), and after recovery from each stressor. Results indicate the PTSS group had higher percentage CD4+ and lower CD8+ levels than non-symptomatic women and blunted NK reactivity to generic challenge. Multiple regression analyses indicated PTSS effects were independent of self-reported distress. Contrary to expectations, cancer mothers without PTSS were not significantly different from controls on tonic or phasic immune outcomes. Also unlike predictions, reactivity to challenge was greatest to the non-social MAT stressor compared to the personalized challenge for all groups. Conclusions are constrained by study limitations (e.g., small sample size and potential phase order effects). Nonetheless, results are consistent with an emerging literature on PTSS-associated immune differences and further suggest these effects may be distinct from that associated with subjective distress more generally.

Medication adherence in pediatric and adolescent liver transplant recipients.

OBJECTIVE: Nonadherence to medications is a leading cause of morbidity in children and adolescents who have had a transplant, yet there are no published data about the use of different methods for detecting whether these children are taking their medications. There are also no published data about the age of transition at which a child assumes responsibility over taking the medications. This information is important if interventions to improve adherence are contemplated. METHODS: We present an analysis of data obtained in the first year of the implementation of an adherence assessment protocol at a pediatric liver transplant clinic in a tertiary medical care center. Data were obtained for children and adolescents who had a liver transplant at least 1 year before the assessments took place. We used 5 adherence detection methods. The 4 subjective methods were self-reported, scaled questionnaires answered by nurses, physicians, caregivers, and patients. For the objective method, a standard deviation (SD) was calculated for tacrolimus blood levels obtained from each patient over time. A higher SD suggests increased variation among patients' blood levels and hence more erratic medication taking. We also asked the patients and caregivers who is responsible for taking the medications and what are the reasons for not taking them. The medical outcome measures were biopsy-proven rejection episodes, number of biopsies regardless of the results, number of hospital admissions, and number of in-patient days. RESULTS: An analysis of 81 cases (258 assessments) revealed that the only method that predicted the medical outcome variables (biopsy-proven rejection and number of biopsies) was the SD of medication blood levels. Patients', clinicians', and caregivers' reports were not predictive. Clinicians' ratings of adherence were not correlated with patients' or caregivers'. The transition of responsibility for medication taking occurred approximately at the age of 12 years. Forgetfulness was cited as the most common reason for nonadherence by patients and caregivers; medication side effects were not frequently cited. CONCLUSIONS: Our results indicate that clinical impression is not sufficient to determine whether children and adolescents are taking their medications after they have had a liver transplant. An objective assessment method should be used. Interventions targeting adherence should address the child's increasing role beginning in early adolescence. A clinical protocol incorporating objective assessments of adherence could potentially be implemented in other settings. It could form the basis for the evaluation of efficacy of interventions seeking to improve adherence to medications.

Posttraumatic stress responses in children with life-threatening illnesses.

Posttraumatic stress symptoms have been reported in response to various serious medical illnesses in adults and children. Not surprisingly, posttraumatic stress is probably more common in response to acute, life-threatening, events that are related to the illness. Emerging data suggest that children often experience life-saving medical procedures as traumatic, which puts caretakers and medical personnel in the role of perpetrators for the children. Trauma symptoms are also reported as common and severe in caregivers. Both of these issues have been previously poorly understood and should be addressed in assessment and treatment. As with other traumatic events, developmental considerations, the nature and severity of the event itself, social supports, and premorbid exposure to negative life events are also important issues to consider in developing appropriate interventions. The importance of developing prevention and treatment for PTSD in medically ill children and adults includes increased morbidity and mortality (e.g., nonadherence to medications) and psychiatric sequelae and decreased quality of life. Obstacles to systematic study of a psychiatric intervention for this group include difficulties assessing multidrug regimens and cognitive treatment effects in this group. The relative stability of social supports and the potential use of preventive measures make this an attractive population for intervention. Clinicians and researchers are encouraged to work together to develop and use uniform screening and assessment methods that will help to identify cases and facilitate the multicenter trials that are vital to increasing knowledge in this patient population.