A Multi-Modal Family Peer Support-Based Program to Improve Quality of Life among Pediatric Brain Tumor Patients: A Mixed-Methods Pilot Study.

BACKGROUND: Pediatric brain tumor (PBT) survivors and their families are at risk for diminished psychosocial and quality of life outcomes. Community-based programs that leverage peer support in the context of integrative modalities such as traditional Chinese medicine (TCM) represent a promising avenue for meeting the multidimensional needs of survivors and their families. METHODS: Parents and children were enrolled in a 12-week program that included weekly group TCM, a moderated private Facebook support group designed through social support and modeling theory, and weekly parent-only health behavior education and yoga. Process measures and quantitative and qualitative survey data was collected to gauge participant adherence, acceptability, and satisfaction, as well as exploratory outcomes. RESULTS: Eleven parents completed surveys at all time points. Six of nine families attended at least 80% of the group TCM sessions, and eight of nine families interacted in the Facebook support group at least five days a week. Parents reported high levels of satisfaction and perceived benefits for the program. Baseline emotional distress, health behaviors, and QoL measurements improved during the three-month intervention. Qualitative data indicated parents perceived both in-person and the Facebook group peer support contributed to the benefits of the program. CONCLUSION: This feasibility study demonstrated that a multimodal peer support-based intervention that included in-person and online group interaction is feasible and acceptable to parents of pediatric brain tumor patients. Further research on interventions for caregivers that include in-person and online group-based peer support is warranted, with the goal of exploring similar outcomes in other childhood cancer diagnoses.

Perceptions of changes in clinical, informational, and supportive relationships after end of treatment among parents of young childhood cancer survivors.

BACKGROUND: Parents of childhood cancer patients experience changes in relationships with their health-care team as the child transitions from treatment to long-term survivorship (LTS). These changes may affect parent receptivity of survivorship-health-related programs, yet little is known about the experience of changing clinical relationships for parents as treatment ends and children transition into LTS. METHODS: In-depth, semistructured interviews were conducted with 20 English-speaking parents of childhood cancer survivors less than 13 years old who were greater than 1-year posttreatment. Audiotaped, transcribed interview content was analyzed using emergent themes grouped and refined in a process of multistaged constant comparison. RESULTS: There was a consensus among parents regarding the emotional stressors of the period immediately after the end of treatment. Regardless of positive or negative recollection of treatment, parents commonly viewed their health-care team with affection and this period as one of stability and security. Transitioning off treatment was viewed as a severe disruption of the security of weekly, treatment-related contact with nurses, nurse practitioners, physician's assistants, and physicians. LTS was generally viewed as presenting lower levels, but new types of stress as new, psychosocial late effects were seen to emerge. Clinical needs shifted to prevention and late-effect management. CONCLUSION: Parents of young childhood cancer survivors experience a similar emotional trajectory from treatment to transitioning off treatment and into LTS. This period is seen by parents as uniquely distressing because it represents a disruption of the hard-won safety represented by regular clinical relationships.

Relationship between social support, quality of life, and Th2 cytokines in a biobehavioral cancer survivorship trial.

OBJECTIVE: Benefits of social support (SS) during cancer survivorship are complex. This study examines change in SS over time in cervical cancer (CXCA) survivors who have completed definitive treatment and how changing SS impacts quality of life (QOL) and T-helper type 2 (Th2) cytokines. METHODS: We conducted a randomized trial in 204 CXCA survivors to test if psychosocial telephone counseling (PTC) could improve QOL compared to usual care (UC). Although PTC did not target SS, data were collected at baseline, 4 and 9 months post-enrollment using the Medical Outcomes Survey Social Support scale. Biospecimens were collected to investigate associations with patient-reported outcomes. Data were analyzed using multivariate linear models and stepwise regression. RESULTS: Participants' mean age was 43. PTC participants experienced increasing SS compared to UC at 4 months (PTC-UC = 5.1; p = 0.055) and 9 months (PTC-UC = 6.0; p = 0.046). Higher baseline SS and increasing SS were independently associated with improved QOL at 4 and 9 months after adjusting for patient characteristics (p < 0.05). Differences between study arms were not statistically significant. Improvements in QOL at 4 months were observed with increases in emotional/informational and tangible SS. Increasing SS predicted significant longitudinal decreases in IL-4 and IL-13 at 4 months that were larger in the PTC arm (interactions p = 0.041 and p = 0.057, respectively). CONCLUSION: Improved SS was significantly associated with improved QOL independent of patient characteristics and study arm. Decreasing Th2 cytokines with increasing SS and QOL are consistent with a biobehavioral paradigm in which modulation of the chronic stress response is associated with shifts in immune stance.

Validation of PROMIS emotional distress short form scales for cervical cancer.

OBJECTIVES: Cervical cancer patients are at high risk for emotional distress. In this study we evaluate the PROMIS emotional distress-Depression and -Anxiety Short Forms for assessing depression and anxiety in a cervical cancer population. METHODS: A 15-item questionnaire was used in a cervical cancer biobehavioral randomized clinical trial, testing psychosocial telephone counseling (PTC) against usual care (UC). It was administered to 204 patients prior to randomization, four months post-enrollment, and nine months post-enrollment, together with legacy measures of depression. The short forms were evaluated in patients participating in this study over three time points for internal consistency, convergent validity, and responsiveness to change over time. RESULTS: Overall, 45% and 47% of patients scored in the moderate to severe range for anxiety and depression, respectively. Internal consistency coefficients were ≥ 0.95 at baseline, 4 months, and 9 months for depression and anxiety. The average inter-item correlation was 0.65 and 0.73 at baseline assessment for depression and anxiety, respectively. The depression short form T-score was correlated with legacy distress scales ranging from 0.44-0.76, and the anxiety short form ranging from 0.45-0.78. The depression short form demonstrated sensitivity to change as patients randomized to the counseling intervention reported greater improvement over time in depression (p = 0.014), and a nonsignificant improvement in anxiety, compared to the patients receiving usual care. CONCLUSIONS: The PROMIS depression and anxiety short forms reliably and validly assess cervical cancer-specific emotional distress, capture salient features of distress in this population, and perform as well or better than legacy measures.

Quality of Life Among Parents of Adolescent and Young Adult Brain Tumor Survivors.

We aimed to describe the quality of life (QOL) among parents of adolescent and young adult brain tumor survivors as well as parent, survivor, and diagnosis/treatment-related factors associated with adverse QOL. A cross-sectional study of 28 parents of adolescent and young adult brain tumor survivors (who were on average 10 y postdiagnosis) was used to assess QOL. Parent QOL was measured using the Patient-Reported Outcomes Measurement Information System Global Health measure. Factors associated with adverse parent QOL were explored using logistic regression including: parent, survivor, and diagnosis/treatment-related factors. Parent QOL was within the normal range; however, 40% scored below the clinical threshold of 0.5 SD below the mean for physical and mental health. Parent perceptions of greater family impact, survivor emotional/behavioral health problems, improved cognitive function, and recurrence were associated with adverse parent physical health. Parent anger/sorrow, uncertainty, survivor emotional/behavioral health problems, speech/language problems, and recurrence were associated with adverse parent mental health. Parental emotional resources and perceptions of improved survivor peer relationships were associated with greater parent physical and mental health. The impact of a brain tumor diagnosis and treatment on the QOL of parents may be significant. Interventions are needed to ensure that the needs of parents are met.

"She Was a Little Social Butterfly": A Qualitative Analysis of Parent Perception of Social Functioning in Adolescent and Young Adult Brain Tumor Survivors.

Psychosocial sequelae of diagnosis and treatment for childhood brain tumor survivors are significant, yet little is known about their impact on adolescent and young adult (AYA) brain tumor survivors. Interviews were conducted with parents of AYA brain tumor survivors with a focus on social functioning. Semistructured interviews were conducted with English- and Spanish-speaking parents of AYA brain tumor survivors ≥10 years of age who were >2 years postdiagnosis, and analyzed using emergent themes theoretically integrated with a social neuroscience model of social competence. Twenty parents representing 19 survivors with a survivor mean age 15.7 ± 3.3 years and 10.1 ± 4.8 years postdiagnosis were interviewed. Several themes relevant to the social neuroscience social competence model emerged. First, parents' perceptions of their children's impaired social functioning corroborated the model, particularly with regard to poor social adjustment, social withdrawal, impaired social information processing, and developmentally inappropriate peer communication. Second, ongoing physical and emotional sequelae of central nervous system insults were seen by parents as adversely affecting social functioning among survivors. Third, a disrupted family environment and ongoing parent psychosocial distress were experienced as salient features of daily life. We document that the aforementioned framework is useful for understanding the social impact of diagnosis and treatment on AYA brain tumor survivorship. Moreover, the framework highlights areas of intervention that may enhance social functioning for AYA brain tumor survivors.