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.

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.

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.

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.

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.

Psychosocial and functional outcomes in long-term survivors of osteosarcoma: a comparison of limb-salvage surgery and amputation.

BACKGROUND: Traditionally, physicians have believed that limb-salvage surgery has functional and cosmetic advantages over amputation, yet the literature is equivocal. Therefore, we sought to compare the psychosocial and functional outcomes in osteosarcoma survivors after limb-salvage surgery and amputation. We hypothesized there to be neither psychosocial nor functional outcome differences between groups. PROCEDURE: Participants received treatment of extremity osteosarcoma, had received their cancer diagnosis at least 2 years prior, and were at least 16 years old. A comprehensive set of validated psychosocial and functional measures was used to assess outcome. RESULTS: Fifty-seven patients participated in this study (33 who underwent limb-salvage surgery and 24 who underwent amputation). Participants had gone 12-24 years since diagnosis and were 16-52 years old at study participation. We used multiple linear regression models to examine differences in quality of life, body image, self-esteem, and social support between the two groups and found no differences. Lower limb function was a significant predictor of quality of life (P < 0.001), whereas surgery type did not impact this relationship. Body image was rated significantly worse by those who underwent late amputation, amputation after failed limb salvage, than by those who did not. CONCLUSIONS: Participants with more functional lower limbs had better quality of life than did those with less functional lower limbs regardless of whether they underwent amputation or limb-salvage surgery.

Functional, psychosocial and professional outcomes in long-term survivors of lower-extremity osteosarcomas: amputation versus limb salvage.

As the number of osteosarcoma survivors increases, the impact of quality of life and function needs to be addressed. Limb salvage is the preferred treatment when patients have treatment options; yet, the questionable long-term durability and complications of prostheses, combined with ambiguous function, leave some doubt regarding the best clinical and surgical options. Comparisons between limb salvage patients, amputees and controls also require further investigation. Amputation would leave the patients with a lifelong requirement for an external prosthetic leg associated with an overall limited walking distance. While artificial limbs are much more sophisticated than those used in the past, phantom limb sensations remain a substantial and unpredictable problem in the amputee. Complications such as stump overgrowth, bleeding, and infection, also require further elucidation. Limb salvage surgery using endoprosthesis, allografts or reconstruction is performed in approximately 85% of patients affected by osteosarcoma located in the middle and/or distal femur. One drawback in limb-salvage surgery in the long-term survivor is that endoprostheses have a limited life span with long-term prosthetic failure. The inherent high rate of reoperation remains a serious problem. Replacing a damaged, infected or severely worn-out arthroplastic joint or its intramedullary stem is difficult, especially in the long-stem cemented endoprostheses used in the 1980s. Limb lengthening procedures in patients who have not reached maturity must also be addressed. Periprosthetic infections, compared to other indications for joint reconstruction, were found to be more frequent in patients treated for neoplastic conditions and their outcome can be devastating, resulting in total loss of joint function, amputation, and systemic complications. Quality of life in terms of function, psychological outcome and endpoint achievements such as marriage and employment apparently do not differ significantly between amputee and nonamputee osteosarcoma survivors. Amputee patients nonetheless appear to have made satisfactory adjustments to their deficits with or without a functional external prosthesis. It also appeared that amputee patients had a similar psychological and quality of life outcome as limb salvage patients. There was no evidence of excessive anxiety or depression or deficits in self-esteem compared with the normal population or matched controls. A number of long-term survivors also achieved high ranking in the professional and commercial work place. These positive aspects should be recognized and emphasized to patients and their parents when discussing the outcome.

Differences in behavioral perceptions between young adult burn survivors and cross-informants.

The purpose of this study is to gain insight into the level of agreement, in terms of personal problems, between burn survivors and an informant with whom they have a close personal relationship. Participants in the study were 72 young adult burn survivors between the ages of 18 and 28 with a mean age of 20.9 +/- 2.6 years. There were 37 males and 35 females in the group. The mean total burn surface area was 55.34 +/- 19.9% with injuries occurring before the age of 18, a minimum of 2 years prior to the study with a mean of 14.3 +/- 4.9 years since burned. To assess this issue the participants completed The Young Adult Self-Report (YASR), and the informants completed The Young Adult Behavior Checklist (YABCL). In relationship to burn survivors, the informant group comprised 67% mothers, 3% fathers, and 30% domestic partners. Paired t-test and Pearson Correlations Coefficients were calculated to compare the differences and variance of the Total Problems Scale, Internalizing Scale and Externalizing Scale for the YABCL and YASR results. The family members of burn survivors reported more problems for their young adult relatives than did the informants of the reference population. In general, the YACBL scores were higher than and highly correlated to the YASR scores. Although there were not ethic differences in the YABCL and the YASR measures, the correlation between the YABCL and the YASR was excellent for Caucasian families but not good for Black and Hispanic families. This study supports concerns about the need for routine follow-up into adulthood for those individuals who were burned as children. This would seem to be especially critical for the female population.

The importance of family environment for young adults burned during childhood.

This study examined the role of family environment for young adult burn survivors making the transition from adolescence to adulthood. Ninety-three young adults who sustained large burns as children were asked to describe their families using the Family Environment Scale (FES). When examining the difference between burn survivors and the normative sample of the FES, burn survivors did not perceive their current family environment different than the normative group. However, burn survivors endorsed more items in the areas of achievement orientation and moral-religious emphasis, and less involvement in intellectual-cultural activities. We also examined the relationship between family characteristics on the FES and psychological adjustment of burn survivors as measured by the Young Adult Self-Report (YASR). Increased conflict on the FES was positively associated with YASR total problem score, internalizing behaviors, and externalizing behaviors. In addition, participation in recreational and social activities and organization both inversely correlated with YASR total problem score. In conclusion, increased family conflict was associated with decreased psychological adjustment of burn survivors as measured by the YASR total problem score.

Prevalence of major psychiatric illness in young adults who were burned as children.

OBJECTIVE: To determine the prevalence of major psychiatric illness in a group of young adults who suffered significant burn injury as children. METHOD: A total of 101 persons (58 males, 43 females), aged 21 +/- 2.6 years, 14.0 +/- 5.4 years postburn of 54% +/- 20% total body surface area, were assessed for serious past and present mental illness by using a Structured Clinical Interview (SCID) for Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV) Axis I diagnoses. RESULTS: The SCID findings demonstrated that the prevalence of any Axis I major mental illness was 45.5% for the past month (current) and 59.4% for lifetime. These rates of overall disorder and the rates for most specific disorders were significantly higher than those found in the US population of comparable age. Logistic regression was used to examine demographic and burn characteristics as predictors of current and lifetime psychiatric disorder within the burn survivor sample. The female gender was significantly associated with higher rates of any current disorder. Other demographic and burn characteristics were not significantly related to the overall prevalence of current or lifetime disorder. Only a small number of those with disorders reported any current mental health treatment. CONCLUSIONS: Significant burn injury as a child leads to an increased risk of developing a major mental illness. Young adults who suffered major burn injury as children should be screened for these illnesses to initiate appropriate treatment.

The effectiveness of a pain and anxiety protocol to treat the acute pediatric burn patient.

This retrospective review of 286 acute pediatric burn survivors treated in 2001 evaluated the effectiveness of a pharmacotherapeutic protocol for pain, anxiety, and itching. Background pain, procedural pain, exercise pain, anxiety, incidence of acute stress disorder (ASD), and itch were measured with standardized instruments. When this review was compared to similar reviews done in 1993-1994 and 1998, a steady trend toward using more potent pain medications in this patient population is evident. While the use of acetaminophen alone decreased from 50.6% of patients in 1993-1994 and 26.3% in 1998 to 7.3% in 2001, the use of opiates increased from 44.8% in 1993-1994 and 66.9% in 1998 to 81.3% of patients in 2001. Likewise, the use of benzodiazepines for anxiety has increased from 59.8% in 1998 to 77.5% of patients in 2001. During that same period the incidence of ASD decreased from 12.1% in 1993-1994 to 8.7% of patients in 2001. For effective pain and anxiety management, the average administered dose of lorazepam and morphine also increased, providing impetus to revise the pharmacotherapeutic pain protocol. Having a standard pain protocol furnishes a framework for periodic review and facilitates updating of pain and anxiety treatment practices.

Neuropsychological outcomes of pediatric burn patients who sustained hypoxic episodes.

The neuropsychological outcomes of children who suffered hypoxic episodes following their burns are not completely understood and vary depending on the nature and severity of the episode. A retrospective review of youth that were admitted to this acute burn care facility over the past 20 years was conducted to identify the extent of cognitive and affective difficulties. Thirty-nine children who sustained hypoxic injuries related to their burns were compared with 21 controls that were matched for age, TBSA, and time of injury. Approximately a third of the children who survived from the hypoxia group continued to have long-term cognitive and emotional difficulties. For those who recovered reasonably well, no differences were found from the matched burned controls. These results probably underestimate the true extent of neuropsychological difficulties experienced by these youth given that detailed cognitive testing was not routinely performed. Prospective studies are needed to further characterize the full nature of difficulties and outcomes associated with burn related hypoxic injuries.

Attention deficit hyperactivity disorder & pediatric burn injury: a preliminary retrospective study.

Attention deficit hyperactivity disorder (ADHD) has been described as a preexisting psychiatric disorder for patients with burns that may have contributed significantly to their injury. The authors are not aware of any studies that have specifically looked at ADHD in burn patients and its role in the injury. A retrospective chart review of all youth that were admitted to a burn care unit over the past 20 years and diagnosed with ADHD on admission was conducted to describe the occurrence and features of their injury. In the 39 patients identified as having ADHD, impulsive behavior contributed to burn injury in 21 cases (54%) and possibly four additional cases. In addition, nine of the 21 cases were not on prescribed stimulant medication on the day of burn injury. The presence of ADHD is important to consider with respect to risk and potential prevention of pediatric burn injury.

Phantom limb pain in pediatric burn survivors.

Phantom limb sensation and pain are reported by youth following amputations. While youth survivors of severe burns may require amputation as a part of their treatment, the authors are unaware of any descriptions as to the rates and features of phantom limb sensation and pain in this population. A retrospective chart review of all youth that were admitted to a burn care unit over the past 30 years and received amputations as part of their treatment was conducted to describe the rate of phantom sensation and pain. In the 34 patients with major limb amputations, phantom limb pain occurred at a rate similar to that reported in other studies and was an important issue in their care. Patients with amputations following electrical burn injury had a significantly higher rate of phantom limb pain than those with amputations following flame burn injury.