Health-related quality of life among pediatric patients with acute lymphoblastic leukemia: An exploratory cross-sectional study.

BACKGROUND: Improved survival rates broadened the pediatric oncology focus to include health-related quality of life (HRQoL). This cross-sectional study aimed to examine HRQoL by treatment phase and disease risk level in pediatric patients with B-cell acute lymphoblastic leukemia (B-ALL), including those in early survivorship. PROCEDURE: A subset of data from a larger prospective cohort study was analyzed. Data were collected from 73 patients (73 parent reports and 28 self-reports). Parent proxy and self-report PROMIS measures assessed HRQoL across treatment phases (early intensive, maintenance, and off treatment) and disease risk groups (standard vs high). Analyses assessed the relationship between parent proxy and patient self-reports and the differences in HRQoL among treatment phases and risk groups. RESULTS: Parent proxy reports generally indicated worse fatigue, pain interference, and mobility compared with patient self-reports. Self-reports in the early intensive treatment group suggested worse depressive symptoms, fatigue, mobility, and upper extremity function compared with those in later phases. Parent proxy reports showed worse fatigue and depressive symptoms in early intensive treatment group relative to those in later phases. Patient self-reports in the maintenance group demonstrated the best peer relationships scores. Parent proxy reports in the high-risk group reported significantly higher depressive symptoms and fatigue compared with the standard-risk group. CONCLUSIONS: Differences in HRQoL suggest targets for further assessment and intervention. The early treatment and immediate post-survivorship periods may represent particularly critical time points. Longitudinal studies with larger and diverse samples should further explore HRQoL trajectories in this population.

Evaluation of a transition to survivorship program for pediatric, adolescent, and young adult cancer patients and caregivers.

BACKGROUND: Survivorship education and anticipatory guidance represent an unmet need for pediatric, adolescent, and young adult (AYA) cancer survivors and their caregivers when treatment ends. This pilot study evaluated the feasibility, acceptability, and preliminary efficacy of a structured transition program, bridging treatment to survivorship, to reduce distress and anxiety and increase perceived preparedness for survivors and caregivers. PROCEDURE: Bridge to Next Steps is a two-visit program, within 8 weeks prior to treatment completion and 7 months post treatment, which provides survivorship education, psychosocial screening, and resources. Fifty survivors (age range 1-23 years) and 46 caregivers participated. Participants completed pre- and post-intervention measures: Distress Thermometer and Patient-Reported Outcomes Measurement Information System (PROMIS) anxiety/emotional distress (ages ≥8 years), and perceived preparedness survey (ages ≥14 years). AYA survivors and caregivers completed a post-intervention acceptability survey. RESULTS: Most participants (77.8%) completed both visits, and most AYA survivors (57.1%) and caregivers (76.5%) endorsed the program as helpful. Caregivers' distress and anxiety scores decreased from pre to post intervention (p < .01). Survivors' scores remained the same, which were low at baseline. Survivors and caregivers felt more prepared for survivorship from pre to post intervention (p = .02, <.01, respectively). CONCLUSIONS: Bridge to Next Steps was feasible and acceptable for most participants. AYA survivors and caregivers felt more prepared for survivorship care after participation. Caregivers reported decreased anxiety and distress from pre to post Bridge, whereas survivors remained at a low level for both. Effective transition programs that better prepare and support pediatric and AYA cancer survivors and families from active treatment to survivorship care can contribute to healthy adjustment.

Distracting Through Procedural Pain and Distress Using Virtual Reality and Guided Imagery in Pediatric, Adolescent, and Young Adult Patients: Randomized Controlled Trial.

BACKGROUND: Children with acute and chronic illness undergo frequent, painful, and distressing procedures. OBJECTIVE: This randomized controlled trial was used to evaluate the effectiveness of guided imagery (GI) versus virtual reality (VR) on the procedural pain and state anxiety of children and young adults undergoing unsedated procedures. We explored the role of trait anxiety and pain catastrophizing in intervention response. METHODS: Children and young adults were recruited from the hematology, oncology, and blood and marrow transplant clinics at a children's hospital. Each study participant completed the GI and VR intervention during separate but consecutive unsedated procedures. Self-report measures of pain and anxiety were completed before and after the procedures. RESULTS: A total of 50 participants (median age 13 years) completed both interventions. GI and VR performed similarly in the management of procedural pain. Those with high pain catastrophizing reported experiencing less nervousness about pain during procedures that used VR than those using GI. State anxiety declined pre- to postprocedure in both interventions; however, the decrease reached the level of significance during the VR intervention only. Those with high trait anxiety had less pain during GI. CONCLUSIONS: In our sample, VR worked as well as GI to manage the pain and distress associated with common procedures experienced by children with acute or chronic illnesses. Children who are primed for pain based on beliefs about pain or because of their history of chronic pain had a better response to VR. GI was a better intervention for those with high trait anxiety. TRIAL REGISTRATION: ClinicalTrials.gov NCT04892160; https://clinicaltrials.gov/ct2/show/NCT04892160.

Social adjustment of adolescent cancer patients transitioning off active treatment: A short-term prospective mixed methods study.

BACKGROUND: Psychosocial follow-up in survivorship is a standard of care in pediatric oncology; however, little is known about patients' psychosocial functioning during the transition off active treatment, a unique time in the cancer journey. This study examined the social adjustment of adolescent cancer patients during this transition period, which has been understudied to date. PROCEDURE: Participants were 21 patients (ages 12-18 years; age M = 14.71 years; 62% female, 81% White) with various cancer diagnoses. Patients and their parents completed the Social Competence subscale of the Youth Self-Report (YSR) and Child Behavior Checklist (CBCL), respectively, PedsQL Social Functioning subscale, and a semistructured interview 1-2 months prior to ending treatment (time 1) and 3-7 months after ending treatment (time 2). RESULTS: YSR and CBCL social competence scores were within the normal range at both time points. PedsQL social functioning scores were more consistent with norms for pediatric cancer samples at time 1 and norms for healthy children at time 2, with self-reported scores significantly improving from time 1 to time 2. A subset of patients had elevated social concerns at time 1, a number that decreased by time 2. Interviews revealed both positive and negative themes related to peer relationships and support, quantity of friends, and socialization. CONCLUSIONS: Most adolescent cancer patients are socially well adjusted as they transition off treatment, although a subset have elevated concerns. Interviews provide insight into complex social experiences not captured on questionnaires. Patients may benefit from screening and support during this unique time.

Assessment of end-of-treatment transition needs for pediatric cancer and hematopoietic stem cell transplant patients and their families.

BACKGROUND/OBJECTIVES: The transition off active treatment is a time of significant stress for pediatric cancer patients and families. Providing information and support at this time is among the new psychosocial standards of care in pediatric oncology. This study sought to explore patient and family needs and concerns at the end of their active cancer treatment. DESIGN/METHODS: Forty-nine caregiver-child dyads completed semi-structured interviews and surveys 1-2 months before ending treatment, and again 3-7 months after treatment concluded. RESULTS: Patients and caregivers reported a moderate level of understanding of follow-up care needs, late effects, and perceived preparation. Altogether, child, adolescent, and young adult cancer patients and parents identified similar priorities for information needed during the transition off active treatment. The most essential pieces of information desired by patients and families across time points included reviews of late effects, schedules for follow-up care, health and physical restrictions, communication with the patient's primary care provider, and provision of a treatment summary. At Time 2, patients and families reported a greater retrospective desire for emotional health resources. Most patients and caregivers wanted information from a variety of sources, but the desired timing to receive this information varied and was dependent on disease group. CONCLUSIONS: There are many essential components to end-of-treatment care that are not consistently provided to pediatric cancer patients and families. Formalized programs offering education and support should be provided by multidisciplinary teams prior to the end of active treatment.

Providing Children and Adolescents Opportunities for Social Interaction as a Standard of Care in Pediatric Oncology.

Experiences with peers constitute an important aspect of socialization, and children and adolescents with cancer may experience reduced social interaction due to treatment. A literature review was conducted to investigate the evidence to support a standard of care evaluating these experiences. Sixty-four articles were reviewed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) criteria. Moderate quality of evidence suggest that social interaction can be beneficial to increase knowledge, decrease isolation, and improve adjustment and constitute an important, unmet need. The evidence supports a strong recommendation for youth with cancer to be provided opportunities for social interaction following a careful assessment of their unique characteristics and preferences.

Perspectives on Virtual Care for Childhood Cancer Survivors in Non-Metropolitan Areas during the COVID-19 Pandemic.

The COVID-19 pandemic paved the way for the widespread use of virtual care for childhood cancer survivors (CCSs). CCSs were virtual recipients of diverse care, including long-term follow-up (LTFU), primary care, mental health care, and several others. Virtual care comes with well-documented benefits and challenges. These are further magnified for CCSs living in rural or non-metropolitan areas. Here, we describe the virtual care of CCSs from two Upper Midwest cities with well-established childhood cancer survivor programs within large comprehensive cancer centers in the United States. CCSs from non-metropolitan areas, especially CCSs with two or more late effects, used virtual care more often during the COVID-19 pandemic compared to CCSs from metropolitan areas. A review of the related literature is also included and the identified challenges in providing virtual care, such as privacy concerns, technology-connectivity constraints, and medical license restrictions. Despite these limitations, the care of CCSs has evolved to leverage virtual care and its ability to increase access for patients and promote continuity of care for CCSs living in rural areas.

Self-concept in youth with congenital facial differences: development and recommendations for medical providers.

Congenital facial differences may impact a child's self-perception, activities and valuation, and what has been termed their "self-concept." This article reviews what constitutes self-concept, and its development during childhood and adolescence. The literature examining the role of physical appearance, specifically congenital facial differences on individuals' perceptions of self are reviewed in the context of psychosocial development. Positive self-concept can impact healthy behaviors, positive interactions with peers, and academic achievement. The role of mental health professionals in evaluating self-concept and objective measures of self-concept are discussed, and recommendations are made to assist medical practitioners regarding monitoring and encouragement of positive self-concept in children with congenital facial differences.

Playing With a Purpose: The Impact of Therapeutic Recreation During Hospitalization.

Background: Youth undergoing cancer treatment and hematopoietic stem cell transplant (HSCT) spend significant time in the hospital, which is disruptive to their physical, social, and emotional development. Therapeutic recreation (TR) can help individuals with an illness maintain or improve their health, quality of life, and physical functioning. TR is an understudied intervention, particularly with youth in the hospital setting. Methods: Forty-nine children (median age = 12 years, interquartile range [IQR] 11-15 years) hospitalized for cancer treatment or HSCT were assigned to participate in either the historical control or TR intervention. Participants wore a Fitbit charge HR for three days to measure movement. At the end of the study participation, they completed self-report measures of mood, social connectedness, and health-related quality of life. Results: Compared with historical controls, the TR intervention group had improved positive affect and decreased mood disturbance (p = 0.03); had better sleep quality (p = 0.003); and was more satisfied with the leisure activities offered in the hospital (p = 0.01). There were no differences in the number of steps taken per day, somatic distress, cooperation with cares, or interaction with medical personnel or caregivers. Both groups reported poor availability and support of peer companions. Discussion: TR is one avenue to increase leisure activities and positively impact mood. More thought needs to be given to how TR programs can be leveraged to increase physical activity and social connectedness.

Evaluation of fatigue and related factors in survivors of pediatric cancer and hematopoietic stem cell transplant.

This study sought to better understand specific factors contributing to fatigue in survivors of pediatric cancer and hematopoietic stem cell transplant (HSCT). As part of a larger study evaluating long-term psychosocial functioning of pediatric cancer survivors, N = 87 participants completed measures assessing fatigue and emotional and behavioral functioning. Chart abstraction was used to catalog diagnosis, treatments received, treatment intensity, and late effects. Results suggest clinically significant fatigue in n = 4 (4.6%) of survivors participating in this study. Fatigue was greater for participants with more recent diagnoses and who were more recently off treatment and was positively associated with parent and self-report of internalizing (emotional) and externalizing (behavioral) symptoms. Participants with more severe late effects suffered greater fatigue; however, fatigue was not associated with treatment intensity or therapy type. Fatigue is an important variable to consider in evaluating the social, emotional, behavioral, and physical well-being of cancer and HSCT survivors. Interventions are needed to address fatigue directly, while also addressing both contributing factors to fatigue and potential negative outcomes that result from fatigue in survivorship.

Transplant center practices for psychosocial assessment and management of pediatric hematopoietic stem cell donors.

Understanding the potential emotional and psychological risks of pediatric sibling HSC donation is an area of research that remains in its infancy. A cross-sectional survey was distributed electronically to directors at all CIBMTR and EBMT centers to describe current transplant center practices for obtaining assent, preparation for the physical/emotional experiences of donation, and monitoring the post-donation well-being of pediatric donors (<18 years of age). Respondents were 45/91 (49%) and 66/144 (46%) of CIBMTR and EBMT centers, respectively. Although 78% of centers reported having a mechanism in place to ensure donor free assent, centers also reported only limited assessment of psychosocial suitability to manage the emotional risks of donation. More than half of centers reported no psychosocial follow-up assessment post-donation. Few centers have policies in place to address donor psychological needs. Future investigations should include medical and psychosocial outcomes following full integration of comprehensive psychosocial screening and surveillance of pediatric donors.