A large body of research confirms the presence of psychosocial distress and resiliencies of families as they initiate and complete pediatric cancer treatment. Although most families adapt and are able to cope with the stressors associated with a cancer diagnosis and treatment for their child, there are currently many “missed opportunities” for identifying problems for which we have effective preventative or early interventions. If untreated, psychosocial stress has the potential to escalate and impact cancer care and outcomes. For example, psychological factors are important, across cancers, in adherence to treatment and ongoing medical monitoring and health promoting behaviors.
While evidence-based assessment and intervention approaches relevant across the course of treatment have been developed, efforts continue to integrate psychosocial screening into clinical care on a systematic basis. As a result, researchers at the Center for Childhood Cancer Research (CCCR) led by Lamia P. Barakat, PhD are analyzing the acceptability, feasibility, and validity of tools used for psychosocial assessment or screening at various time points across the course of treatment to help predict and improve outcomes for children with cancer and their families. Additionally, identifying factors associated with ongoing distress for pediatric cancer patients and their family can facilitate cancer care and assure timely provision of evidence-based psychosocial services.
Psychosocial screening at time of cancer diagnosis and throughout treatment
Psychosocial screening is recognized as necessary and important early in treatment to ensure optimal, efficient care and access to evidence-based psychosocial services. Early systematic assessment of psychosocial risks and resources facilitates the delivery of evidence-based psychosocial interventions at critical times over the cancer treatment trajectory. Prompt assessment of the psychosocial risks and needs of families facing pediatric cancer treatment promotes delivery of psychosocial care in a systematic way that addresses the family’s needs while leveraging family resources to reduce distress and improve treatment outcomes including health-related quality of life.
Researchers at the CCCR are using psychosocial assessment tools to learn more about children and families’ psychosocial risk and resources at multiple points throughout treatment, starting at the time of diagnosis, followed by 6 months from initiation of treatment and lastly at the end of treatment. Screening includes a brief screening tool (PAT2.0) along with measures of distress, health-related quality of life, child and parent well being, and family functioning. While use of these tools is valid for assessing psychosocial risk at the time of diagnosis, evaluating its efficacy to identify changes in family needs and psychosocial risk at multiple time points throughout treatment is critical to effectively direct psychosocial care that matches the needs of families during cancer treatment and beyond.
Furthermore, this research aims to address potential cancer health care disparities in psychosocial care by establishing a valid screening approach (PAT2.0) for both English and Spanish speaking families in the pediatric cancer setting. The goal is to validate English and Spanish versions of this tool that can be implemented into standard clinical practice that promotes appropriate intervention and diminishes disparities in care and outcomes, including those for Spanish-speaking families.
Once the utility of psychosocial screening has been determined, researchers can use established methods to implement the psychosocial screening in clinical care, disseminate findings to the healthcare team, and incorporate information on family risks and resources into the psychosocial management and support process for children, adolescents and young adults with cancer and their families.
Psychosocial screening for families transitioning off cancer treatment
As children, adolescents, and young adults’ transition from active cancer treatment to post-treatment care, they and their families often face a new set of challenges as they define a new “normal” and begin to reintegrate into school, work, and communities. Although many families adjust to post-treatment life with strength and success, the physical, neurocognitive, and psychosocial consequences of cancer treatment can make it difficult to return to school, impair neurocognitive functioning, and impact family functioning. As a result, some families will require significant support to facilitate recovery and reintegration.
Researchers at the CCCR are investigating how families cope with the transition off of active cancer treatment. This transition is a critical time in the treatment trajectory that brings both positive feelings and uncertainty as families try to “normalize” their lives. As part of this study, researchers at the CCCR are examining whether psychosocial screening can identify families who are at risk for post-treatment challenges in order to promote the identification of unmet needs and foster the delivery of additional, targeted support to patients and families that may improve post-treatment adaptation and smooth the transition to survivorship. CCCR faculty members are involved in a study to assess the acceptability and feasibility of a brief screening tool for children and adolescents with cancer and their families as they move off treatment. If patients or caregivers indicate a significant level of distress on the screening tools, results are provided to the family’s assigned social worker who coordinates provision of psychosocial services to address each family’s needs.
In pursuit of early identification and intervention, researchers at the CCCR are developing and assessing the acceptability and feasibility of a psychosocial screening tool for families transitioning off cancer treatment that should help identify families at high risk for post-treatment challenges. Screening assesses patient and parent distress, patient neurocognitive and behavioral functioning, patient and parent health-related quality of life, and family resources and functioning. Researchers hope that such early identification will ensure timely and effective psychosocial care as children with cancer and their families move off treatment into follow-up care and reintegrate into their schools, work and communities.