Factors contributing to financial distress in young adults with cancer: Material resources, health, and workplace.

BACKGROUND: Financial distress is a primary concern for young adults with cancer. OBJECTIVE: The aim of this study was to identify material resources, physical and psychological health, and workplace variables that are associated with financial distress in young adult cancer survivors. METHODS: A cross-sectional study was conducted using the Cancer Survivor Employment Needs Survey. Participants were young adults (18-39 years of age) who lived in the United States and had a cancer diagnosis. Multivariable linear regression was used to model relations between financial distress and material resources, physical and psychological health, and workplace variables. RESULTS: Participants (N = 214) were mostly non-Hispanic White (78%), female (79%), and had a mean age of 31 years and 4.6 years post-diagnosis. Material resources, physical and psychological health, and workplace variables were all identified as contributing to study participants' financial distress. Among the young adults surveyed, financial distress was prevalent, and an array of problems were associated with financial distress. CONCLUSION: Oncology and rehabilitation providers should openly discuss finances with YAs with cancer and guide them to resources that can address their financial, benefits, and vocational needs to ultimately improve quality of life.

Totally Excited about Moving Mobility and Exercise (TEAM Me): A Successful Multidisciplinary Exercise Quality Improvement Initiative for Pediatric and Young Adult Oncology and Stem Cell Transplant Inpatients.

BACKGROUND: Pediatric, adolescent and young adult (PAYA) patients are less active than their healthy counterparts, particularly during inpatient stays. METHODS: We conducted a quality improvement initiative to increase activity levels in patients admitted to our pediatric oncology and cellular therapy unit using a Plan-Do-Study-Act (PDSA) model. An interdisciplinary team was assembled to develop an incentive-based inpatient exercise and activity program titled Totally Excited About Moving Mobility and Exercise (TEAM Me). As part of the program, patients were encouraged by their care team to remain active during their inpatient stay. As an additional incentive, patients earned stickers to display on TEAM Me door boards along with tickets that could be exchanged for prizes. Activity was assessed by documentation of physical therapy participation, tests of physical function, and surveys of staff perceptions of patient activity levels, motivations, and barriers. RESULTS: Compared to baseline, patient refusals to participate in physical therapy decreased significantly (24% vs. 2%) (p < 0.02), and staff perceptions of patient motivation to stay active increased from 40% to 70% in the post implementation period. There were no changes in physical function tests. CONCLUSIONS: An incentive-based exercise program for young oncology inpatients greatly improved patient activity levels, participation in physical therapy and influenced professional caregivers' beliefs.

Bereaved Parent Perspectives on End-of-Life Conversations in Pediatric Oncology.

BACKGROUND: Professional education pertaining to end-of-life care with pediatric oncology patients is limited. Pediatric trainees learn about end-of-life conversations largely from the provider's perspective. Bereaved parents can inform the education of oncologists and the interdisciplinary team by sharing their perceptions and preferences through personal narratives. METHODS: The aim of this project was to enhance the healthcare teams' understanding of bereaved parents' end-of-life care preferences through narratives. Bereaved parents were recruited from our institution's Pediatric Supportive Care Committee membership. Parents were tasked with identifying elements of care that were of the greatest importance to them, based upon their personal experiences during their child's end-of-life care. Narratives were analyzed using standard qualitative methods. RESULTS: Parents of five patients participated, including four mothers and three fathers. Ten themes summarizing essential elements of end-of-life care were identified, including early ongoing and stepwise prognostic disclosure, honoring the child's voice, support of hope and realism, anticipatory guidance on dying, and continued contact with the bereaved. CONCLUSION: Bereaved parents emphasize the need for providers to have ongoing honest conversations that support realism and hope that can help them to best prepare for their child's end of life and to remain in contact with them after death.

A review of psychological symptoms and post-traumatic growth among adolescent and young adult survivors of childhood cancer.

The majority of childhood cancer patients survive well into adulthood, but remain at risk for psychological late effects that can impact overall health and quality of life. The current narrative review summarizes the literature on psychological late effects, including anxiety, depression, psychological distress, post-traumatic stress disorder, suicidality, psychoactive medication use, and post-traumatic growth in survivors of childhood cancers. While results were mixed, many studies demonstrated that psychological symptoms occurred at levels higher than would be expected in the general population. Treatment, environmental, and behavioral risk factors, as well as symptom onset and trajectory merit further investigation.

Symptom and Illness Experience for English and Spanish-Speaking Children with Advanced Cancer: Child and Parent Perspective.

Understanding the symptom and illness experience of children with advanced cancer facilitates quality care; yet, obtaining this understanding is complicated by the child's developmental level and physical and psychological health factors that affect communication. The purpose of this study was to describe the symptom and illness experience of English- and Spanish-speaking children with advanced cancer as described by the child and parent. We conducted hermeneutic phenomenological, descriptive, and interpretive interviews with eligible children and parents. The interdisciplinary research team analyzed transcripts hermeneutically until consensus on theme labels was reached. Four themes and associated subthemes were identified from the interviews of the 10 child-parent dyads: 1. symptoms disrupt life (path to diagnosis, life is disrupted), 2. isolation (lack of understanding, family separations/relationships), 3. protection, and 4. death is not for children. Children and parents readily described the impact symptoms and cancer treatment had on their lives and relationships. These findings underscore the salient aspects of daily life disrupted by cancer. With a deeper understanding of symptom burden and its interference, relationship and communication implications, and anticipatory grief, the treating team may better optimize care for children and their families living with advanced cancer.

Using the MDASI-Adolescent for Early Symptom Identification and Mitigation of Symptom Impact on Daily Living in Adolescent and Young Adult Stem Cell Transplant Patients.

Hematopoietic stem cell transplantation (HSCT) requires an intensive pre- and post-procedure course that leads to symptoms including fatigue, nausea/vomiting, and pain, all of which interfere significantly with activities of daily living. These symptoms place a substantial burden on patients during the time period surrounding transplant as well as during long-term recovery. The MD Anderson Symptom Inventory (MDASI) is a symptom-reporting survey that has been successfully used in adult patients with cancer and may have utility in the adolescent and young adult (AYA) population. At the Children's Cancer Hospital at MD Anderson Cancer Center, we adopted a modified version of the MDASI, the MDASI-adolescent (MDASI-Adol), as a standard of care for clinical practice in assessing the symptom burden of patients in the peri-transplant period. We then conducted a retrospective chart review to describe the clinical utility of implementing this symptom-screening tool in AYA patients admitted to our pediatric stem cell transplant service. Here, we report our findings on the symptom burden experienced by pediatric and AYA patients undergoing stem cell transplantation as reported on the MDASI-Adol. Our study confirmed that the MDASI-Adol was able to identify a high symptom burden related to HSCT in the AYA population and that it can be used to guide symptom-specific interventions prior to transplant and during recovery. Implementing a standard symptom-screening survey proved informative to our clinical practice and could mitigate treatment complications and alleviate symptom burden.

Knowledge of Legal Protections and Employment-Related Resources Among Young Adults with Cancer.

Purpose: Young adults (aged 18-39 years) who have received a cancer diagnosis can encounter significant barriers in their transition to employment. American young adults' familiarity with federal legislation and resources related to employment is unclear. The study questions included: (1) To what extent do young adults who have had a cancer diagnosis know about legal and programmatic supports that may help to address their employment-related needs and (2) What modes of receiving information about resources to address their employment-related concerns do young adults who have had a cancer diagnosis prefer? Methods: A cross-sectional online survey was conducted with a convenience sample composed of 203 young adults living in the United States, had a cancer diagnosis other than nonmelanoma skin cancer, and were between 18 and 39 years of age. Over half (57.6%) of respondents received a cancer diagnosis at age 24 years or older. The mean age at participation was 30.4. Results: More than half of the sample (57.0%) was familiar with the Americans with Disabilities Act yet many did not know that cancer was a covered condition. Almost 80% of the respondents were not familiar with other federal initiatives with employment protections for people with cancer. Participants preferred in-person trainings and resource fact sheets as the presentation channels, although sociodemographic factors such as employment status were related to preferred delivery methods. Conclusion: These young adults would benefit from additional outreach around federal guidelines concerning employment-related rights and services and programs applicable to young adult cancer survivors.

Spiritual assessment and spiritual care offerings as a standard of care in pediatric oncology: A recommendation informed by a systematic review of the literature.

Children with cancer and their families experience shifts in spiritual wellness from diagnosis through treatment and survivorship or bereavement. An interdisciplinary team conducted a systematic review of quantitative and qualitative research on spiritual assessments, interventions, and outcomes in childhood cancer following PRISMA guidelines using a PROSPERO registered protocol. Thirty-nine well-designed studies were included in the final analysis. The findings from this systematic review indicate the need for early spiritual assessment with offering of continued support for the spiritual functioning of children with cancer and their families as a standard of care.

Neurocognitive and Psychosocial Outcomes in Pediatric Brain Tumor Survivors.

The late neurocognitive and psychosocial effects of treatment for pediatric brain tumor (PBT) represent important areas of clinical focus and ongoing research. Neurocognitive sequelae and associated problems with learning and socioemotional development negatively impact PBT survivors' overall health-related quality of life, educational attainment and employment rates. Multiple factors including tumor features and associated complications, treatment methods, individual protective and vulnerability factors and accessibility of environmental supports contribute to the neurocognitive and psychosocial outcomes in PBT survivors. Declines in overall measured intelligence are common and may persist years after treatment. Core deficits in attention, processing speed and working memory are postulated to underlie problems with overall intellectual development, academic achievement and career attainment. Additionally, psychological problems after PBT can include depression, anxiety and psychosocial adjustment issues. Several intervention paradigms are briefly described, though to date research on innovative, specific and effective interventions for neurocognitive late effects is still in its early stages. This article reviews the existing research for understanding PBT late effects and highlights the need for innovative research to enhance neurocognitive and psychosocial outcomes in PBT survivors.

Does acute stress disorder predict subsequent posttraumatic stress disorder in pediatric burn survivors?

OBJECTIVE: This study examined the prevalence of posttraumatic stress disorder (PTSD) in pediatric burn survivors who had been treated for acute stress disorder (ASD) symptoms during their initial hospitalization and compared them to patients who had been asymptomatic for ASD symptoms. METHOD: Participants were identified from electronic medical records from 1995 to 2008 and data were collected from 2006 to 2008. Participants were primarily matched on total body surface area burned and gender, and as close as possible on age at time of burn and number of years postburn. Pediatric burn survivors completed a semistructured clinical interview, the Missouri Assessment of Genetics Interview for Children-PTSD section, which is based on criteria from the DSM-IV for evaluating lifetime PTSD. RESULTS: There were 183 participants in the study, and from this sample 85 matched pairs were identified. Most were 5 years postburn. The prevalence of PTSD at the time of follow-up was 8.24% (7 of 85) for the ASD group and 4.71% (4 of 85) for the non-ASD comparison group. No significant differences were found between these groups at P value ≥ .05. A logistic regression analysis was conducted to determine if prior ASD diagnosis, burn size, gender, ethnicity, age at time of study participation, and number of years postburn predicted subsequent PTSD. None of the variables were significant predictors. CONCLUSION: The prevalence of PTSD was similar in children who had ASD symptoms and those without ASD symptoms. The lifetime prevalence of PTSD was lower than reported in other studies. A possible explanation for this finding is that children received timely pharmacotherapy and psychotherapy during their acute hospitalization.

Symptom profiles in children with advanced cancer: Patient, family caregiver, and oncologist ratings.

BACKGROUND: Systematic symptom assessment is not routinely performed in pediatric oncology. The objectives of the current study were to characterize the symptoms of pediatric oncology outpatients and evaluate agreement between patient and proxy reports and the association between children's ratings and oncologists' treatment recommendations. METHODS: Two versions of the pediatric Memorial Symptom Assessment Scale (pMSAS) were translated into Spanish. An age-appropriate and language-appropriate pMSAS was administered independently before visits to the oncologist to patients and family caregivers (caregivers) and after visits to consenting oncologists. Statistical analysis included Spearman correlation coefficients and weighted kappa values. RESULTS: English and Spanish results were similar and were combined. A total of 60 children and their caregivers completed the pMSAS. The children had a median age of 10 years (range, 7-18 years); approximately 62% were male and 33% were Spanish-speaking. Fourteen oncologists completed the pMSAS for 25 patients. Nine patients (15%) had no symptoms and 38 patients (63%) reported ≥2 symptoms. The most common symptoms were fatigue (12 patients; 40%) and itch (9 patients; 30%) for the younger children and pain (15 patients; 50%) and lack of energy (13 patients; 45%) among the older children. Total and subscale score agreement varied by proxy type and subscale, ranging from fair to good for most comparisons. Agreement for individual symptoms between the patient and proxy ranged from a kappa of -0.30 (95% confidence interval, -0.43 to -0.01) to 0.91 (95% confidence interval, 0.75 to 1.00). Three of 51 symptomatic patients (6%) had treatment recommendations documented in the electronic health record. CONCLUSIONS: Symptoms are common and cross several functional domains. Proxy and child reports are often not congruent, possibly explaining apparent undertreatment among this group of patients.

Sociooccupational and physical outcomes more than 20 years after the diagnosis of osteosarcoma in children and adolescents: limb salvage versus amputation.

BACKGROUND: To the best of the authors' knowledge, there has been relatively little research published to date regarding very long-term survivors of childhood and adolescent osteosarcoma. In the current study, the authors compared the very long-term survival outcomes of patients with osteosarcoma who were treated with either limb salvage procedures or amputation. METHODS: A total of 38 patients with osteosarcoma who survived ≥ 20 years from the time of diagnosis were divided into 2 groups according to whether they underwent amputation or limb salvage. Participants were asked to complete a questionnaire concerning their education, employment, annual income, marital status, health insurance, lifestyle, siblings, and all current and past health issues. RESULTS: Education, employment, marital status, and health insurance were not found to differ significantly between the 2 groups of survivors, who described themselves as being similar to their siblings. Eight percent of survivors underwent secondary amputation because of complications with an endoprosthesis. The cumulative incidence of second primary neoplasms was 13%, and this finding was significantly higher in females and in survivors who underwent radiotherapy and had a genetic predisposition. The second primary malignancies were breast cancer (ductal invasive carcinoma, ductal in situ carcinoma, and leiomyosarcoma), mediastinal leiomyosarcoma, and squamocellular carcinoma of the oral cavity and the uterine cervix. Amputees required more assistive walking support than survivors who received limb salvage treatment (P<.05, chi-square test). CONCLUSIONS: Despite the many challenges that osteosarcoma survivors face, patients who survived ≥ 20 years after their initial diagnosis reported having overall adjusted well to their physical limitations and were productive individuals.

Self-perceptions of young adults who survived severe childhood burn injury.

The transition of pediatric burn survivors into adulthood is accompanied by a reformulation of their self-concept. To anticipate the need for and guide development of appropriate psychosocial interventions, this study examines how young adults who were burned as children perceive themselves and how this perception might affect their self-esteem. Eighty-two young adult burn survivors (45 male, 37 female) were assessed using the Tennessee Self-Concept Scale, 2nd edition (TSCS2) to determine how the participants perceive themselves and their interaction with society. To gain insight into the possible effects of these self-concept scores, relationships were analyzed between self-concept, a behavioral assessment (Young Adult Self-Report [YASR]), and a psychiatric symptom assessment (Structured Clinical Interview for DSM-IV Axis I Disorders [SCID I]). This group of burn survivors scored significantly lower in self-concepts, reflected in TSCS2 subscale scores of physical function, appearance, and sexuality, moral conduct, personal values, academics and work, and identity, than did the reference population. Pearson correlation coefficients showed that as moral, personal, family, and social aspects of self-concept decreased, clinical problems endorsed on the YASR subscales increased, including anxiety, somatic, attention, intrusive, and aggressive. Persons with lower self-concept scores on the TSCS2 personal, family, and social scales were more withdrawn on the YASR. Similarly, those with lower TSCS2 scores on the personal and family scales endorsed significantly more thought problems on the YASR. TSCS2 total self-concept, personal, and all of the supplementary scale scores were significantly lower for the group with an affective disorder. Those whose SCID I scores were consistent with a current anxiety disorder had significantly lower scores for the TSCS2 total self-concept and personal. Lower self-concept was associated with endorsement of SCID symptoms. In summary, the significantly lower self-concept scores on the TSCS2 physical scale are consistent with the physical disfigurement and handicaps common with major burn injuries, and a strong indication of this group's perception of the first impression made when interacting with others. The survivors seem to feel worthwhile within the contexts of family and friends. Although the major limitation of this study using the TSCS2 is the lack of a matched reference population to compare the burn survivors, the TSCS2 does help in gaining insight into the self-esteem issues of the burn survivor population.

Bereaved parents' perspectives on pediatric palliative care.

This study's goal was to describe and begin to understand the experience of bereaved parents whose deceased child had received pediatric oncology services at a tertiary comprehensive cancer center. Focus groups were conducted with parents whose children were age 10 years and older at the time of death. Potential participants were contacted by mail and telephone. Sessions were audiotaped and transcribed verbatim. The ATLAS.ti qualitative software program was used to identify and analyze dominant themes. Fourteen parents identified four major themes: standards of care, emotional care, communication, and social support. Bereaved parents discussed the challenges associated with institutional procedures and interpersonal aspects of care in anticipation of and following their child's death. The results of these personal narratives may be used to guide care plans and deliver pediatric palliative and end-of-life interventions.

Personality disorders in young adult survivors of pediatric burn injury.

OBJECTIVE: Life experience shapes personality and chronic trauma in childhood has been associated with risk for development of subsequent personality disorder. The purpose of this study is to determine the prevalence and character of personality disorders and traits in young adult survivors of severe pediatric burn injury. METHOD.: SCID-II and 16PF were completed by 98 young adult survivors of pediatric burn trauma. RESULTS: 48 (49%) met criteria for one or more personality disorders. The most frequent personality disorders were Paranoid (19.4%), Passive Aggressive (18.4%), Antisocial (17.3%), Depressive (11.2%), and Borderline (9.2%). Diagnosis with a personality disorder was associated with comorbid Axis I diagnoses and strongly correlated with personality traits as measured by the 16PF. CONCLUSIONS: Pediatric burn trauma is similar to other chronic traumas of childhood in significant correlation with subsequent personality disorder.

Feasibility, reliability, and validity of the Pediatric Quality of Life Inventory ™ generic core scales, cancer module, and multidimensional fatigue scale in long-term adult survivors of pediatric cancer.

BACKGROUND: Most health-related quality of life assessments are designed for either children or adults and have not been evaluated for adolescent and young adult survivors of pediatric cancer. The objective of this study was to examine the feasibility, reliability, and validity of the Pediatric Quality of Life Inventory (PedsQL ™ Generic Core Scales, Cancer Module, and Multidimensional Fatigue Scale in adult survivors of pediatric cancer. METHODS: Adult survivors (n = 64; Mean age 35 year old; >2 years after treatment) completed the PedsQL™ Generic Core Scales, Cancer Module, and Multidimensional Fatigue Scale. Feasibility was examined with floor and ceiling effects; and internal consistency was determined by Cronbach's coefficient alpha calculations. Inter-factor correlations were also assessed. RESULTS: Significant ceiling effects were observed for the scales of social function, nausea, procedural anxiety, treatment anxiety, and communication. Internal consistency for all subscales was within the recommended ranges (α ≥ 0.70). Moderate to strong correlations between most Cancer Module and Generic Core Scales (r = 0.25 to r = 0.76) and between the Multidimensional Fatigue Scale and Generic Core Scales (r = 0.37 to r = 0.73). CONCLUSIONS: The PedsQL™ Generic Core Scales, Cancer Module, and Multidimensional Fatigue Scale appear to be feasible for an older population of pediatric cancer survivors; however, some of the Cancer Module Scales (nausea, procedural/treatment anxiety, and communication) were deemed not relevant for long-term survivors. More information is needed to determine whether the issues addressed by these modules are meaningful to long-term adult survivors of pediatric cancers.

Pediatric oncologists' practices of prescribing selective serotonin reuptake inhibitors (SSRIs) for children and adolescents with cancer: a multi-site study.

OBJECTIVE: To survey pediatric oncologists regarding prescription of selective serotonin reuptake inhibitors (SSRIs) and related medications for the treatment of depression and anxiety disorders in children with cancer. Specifically, we sought to determine (a) how frequently pediatric oncologists prescribed SSRIs and what were the most commonly prescribed agents; (b) how decisions were made to prescribe, particularly whether mental health professionals were consulted; (c) how patients were monitored while on the agents; and (d) how the FDA black box warning has affected prescribing practices. METHOD: Oncologists from nine children's cancer centers (N = 151) from across the U.S. were surveyed, responding to either on-line or paper versions of a questionnaire developed for this study. RESULTS: A majority of oncologists (71%) reported prescribing SSRIs for their patients. Oncologists reported difficulties differentiating symptoms of depression from aspects of cancer treatment. Mental health practitioners are consulted occasionally but not routinely, and oncologists reported a need for increased mental health resources. Approximately half of oncologists (51%) reported that the FDA black box warning had not affected their practice. In addition, only 28% reported monitoring patients on SSRIs at FDA recommended intervals, and only 9% indicated assessing for suicidality. CONCLUSIONS: Prescription of SSRIs is a common practice of pediatric oncologists, often without consultation with mental health professionals. Post-prescription monitoring appears to be suboptimal, and does not follow FDA guidelines.

Sexual attitudes and behavior of young adults who were burned as children.

OBJECTIVE: Little is known about sexual attitudes and behaviors of adults burned as children. We hypothesized that survivors with large burn scars would have differences in sexual attitudes and behaviors from their unburned counterparts. METHODS: Ninety-two young adults (50 males and 42 females), ages 21.0 ± 2.7 years old, who were burned 30% total body surface area or more as children 14.2 ± 5.4 years earlier, completed the questionnaire "What Young People Believe and Do" by RC Sorenson, 1972. The questionnaire explores sources of sexual information, attitudes toward different sexual behaviors, and experience with different sexual behaviors. RESULTS: Sixty-five percent of the females and 52% of the males currently had a significant other. Although only 54% women and 60% of men felt they were sexually attractive, 83 and 87%, respectively, endorsed feeling confident about sex. Experience with sexual intercourse was common: 90% of females and 76% of males. Burn severity was not significantly correlated with sexual attitudes and behaviors. CONCLUSION: The majority of 92 young adults burned as children described sexual attitudes and behaviors comparable to the general population and the vast majority had significant sexual experience. Females reported more sexual behavior post-burn than males.