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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Impact of a pediatric palliative care program.

BACKGROUND: The question of where a child should die at home or in the hospital has been a subject of recent debate. We instituted a palliative care program with advanced end-of-life planning and hypothesized that a significant number of families would prefer that their child be at home rather than at a hospital at the end-of-life and that the overall quality of care would thereby improve. PROCEDURE: Study design was single group, retrospective parent report of satisfaction with a new palliative care program. Participants were the caregivers, primarily parents, involved in the palliative care program. They completed a satisfaction survey, and their choice of environment at the end-of-life was noted. RESULTS: Fifty-one families experienced the death of a child between 2001 and 2003. Most of the patients had had cancer (n = 29, 57%), and the most frequent non-oncologic patient had had cystic fibrosis. The parents (caregiver) participation rate was 69%. After a palliative care program was instituted, 69% of families preferred their child to be at home at the end-of-life, compared with 18% before the program was instituted (P = 0.0049 chi(2)-test). The satisfaction with the medical services was high (very good, 26; good, 4; satisfying, 2; acceptable, 3; deficient, 0; unacceptable, 0), independent of locale at time of death. CONCLUSION: When palliative care was offered either at hospital or home, palliative care occurred more frequently at home.

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.

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.

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.

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 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.