Abby R. Rosenberg

Differences in Parent-Provider Concordance Regarding Prognosis and Goals of Care Among Children With Advanced Cancer

PURPOSE Concordance between parents of children with advanced cancer and health care providers has not been described. We aimed to describe parent-provider concordance regarding prognosis and goals of care, including differences by cancer type. PATIENTS AND METHODS A total of 104 pediatric patients with recurrent or refractory cancer were enrolled at three large children’s hospitals. On enrollment, their parents and providers were invited to complete a survey assessing perceived prognosis and goals of care. Patients’ survival status was retrospectively abstracted from medical records. Concordance was assessed via discrepancies in perceived prognosis, statistics, and McNemar’s test. Distribution of categorical variables and survival rates across cancer type were compared with Fisher’s exact and log-rank tests, respectively. RESULTS Data were available from 77 dyads (74% of enrolled). Parent-provider agreement regarding prognosis and goals of care was poor (kappa, 0.12 to 0.30). Parents were more likely to report cure was likely (P < .001). The frequency of perceived likelihood of cure and the goal of cure varied by cancer type for both parents and providers (P < .001 to .004). Relatively optimistic responses were more common among parents and providers of patients with hematologic malignancies, although there were no differences in survival. CONCLUSION Parent-provider concordance regarding prognosis and goals in advanced pediatric cancer is generally poor. Perceptions of prognosis and goals of care vary by cancer type. Understanding these differences may inform parent-provider communication and decision making.

Symptoms and Distress in Children With Advanced Cancer: Prospective Patient-Reported Outcomes From the PediQUEST Study

PURPOSE Thousands of children are living with advanced cancer; yet patient-reported outcomes (PROs) have rarely been used to describe their experiences. We aimed to describe symptom distress in 104 children age 2 years or older with advanced cancer enrolled onto the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) Study (multisite clinical trial evaluating an electronic PRO system). METHODS Symptom data were collected using age- and respondent-adapted versions of the PediQUEST Memorial Symptom Assessment Scale (PQ-MSAS) at most once per week. Clinical and treatment data were obtained from medical records. Individual symptom scores were dichotomized into high/low distress. Determinants of PQ-MSAS scores were explored using linear mixed-effects models. RESULTS During 9 months of follow-up, PQ-MSAS was administered 920 times: 459 times in teens (99% self-report), 249 times in children ages 7 to 12 years (96% child/parent report), and 212 times in those ages 2 to 6 years (parent reports). Common symptoms included pain (48%), fatigue (46%), drowsiness (39%), and irritability (37%); most scores indicated high distress. Among the 73 PQ-MSAS surveys administered in the last 12 weeks of life, pain was highly prevalent (62%; 58% with high distress). Being female, having a brain tumor, experiencing recent disease progression, and receiving moderate- or high-intensity cancer-directed therapy in the prior 10 days were associated with worse PQ-MSAS scores. In the final 12 weeks of life, receiving mild cancer-directed therapy was associated with improved psychological PQ-MSAS scores. CONCLUSION Children with advanced cancer experience high symptom distress. Strategies to promote intensive symptom management are indicated, especially with disease progression or administration of intensive treatments.

Systematic review of psychosocial morbidities among bereaved parents of children with cancer

The objective of this review was to comprehensively summarize existing studies utilizing validated instruments to measure psychosocial outcomes among bereaved parents of children with cancer. This population has increased risks of anxiety, depression, prolonged grief, and poor quality of life. Parental morbidity is associated with psychiatric co‐morbidities, prior loss, economic hardship, duration, and intensity of childs cancer‐therapy, perceptions of medical care, childs quality of life, preparedness for and location of the childs death. Rigorous, prospective research is needed to identify risk‐groups, define outcomes, and design interventions which will improve parental outcomes after the death of a child due to cancer. Pediatr Blood Cancer 2012; 58: 503–512.

Insurance status and risk of cancer mortality among adolescents and young adults.

Adolescents and young adults with cancer have inferior survival outcomes compared with younger pediatric patients and older adult patients. Lack of insurance may partly explain this disparity. The objective of this study was to identify associations between insurance status and both advanced‐stage cancer and cancer‐specific mortality.

Psychological Distress in Parents of Children With Advanced Cancer

IMPORTANCE Parent psychological distress can impact the well-being of childhood cancer patients and other children in the home. Recognizing and alleviating factors of parent distress may improve overall family survivorship experiences following childhood cancer. OBJECTIVES To describe the prevalence and factors of psychological distress (PD) among parents of children with advanced cancer. DESIGN Cohort study embedded within a randomized clinical trial (Pediatric Quality of Life and Evaluation of Symptoms Technology [PediQUEST] study). SETTING Multicenter study conducted at 3 childrens hospitals (Boston Childrens Hospital, Childrens Hospital of Philadelphia, and Seattle Childrens Hospital). PARTICIPANTS Parents of children with advanced (progressive, recurrent, or refractory) cancer. MAIN OUTCOME MEASURE Parental PD, as measured by the Kessler-6 Psychological Distress Scale. RESULTS Eighty-six of 104 parents completed the Survey About Caring for Children With Cancer (83% participation); 81 parents had complete Kessler-6 Psychological Distress Scale data. More than 50% of parents reported high PD and 16% met criteria for serious PD (compared with US prevalence of 2%-3%). Parent perceptions of prognosis, goals of therapy, child symptoms/suffering, and financial hardship were associated with PD. In multivariate analyses, average parent Kessler-6 Psychological Distress Scale scores were higher among parents who believed their child was suffering highly and who reported great economic hardship. Conversely, PD was significantly lower among parents whose prognostic understanding was aligned with concrete goals of care. CONCLUSIONS AND RELEVANCE Parenting a child with advanced cancer is strongly associated with high to severe levels of PD. Interventions aimed at aligning prognostic understanding with concrete care goals and easing child suffering and financial hardship may mitigate parental PD.

Resilience and psychosocial outcomes in parents of children with cancer

The psychosocial function of parents of children with cancer can impact the well‐being of the entire family. Resilience resources are likely related to psychosocial outcomes and may be amenable to intervention. We hypothesized that parents with lower resources would report worse outcomes.

The association of personal resilience with stress, coping, and diabetes outcomes in adolescents with type 1 diabetes: Variable- and person-focused approaches

This study explored the association between personal resilience and distress, coping, and diabetes outcomes in 50 adolescents with type 1 diabetes. Resilience was defined by a factor score derived from validated instruments measuring self-efficacy, optimism, and self-esteem. Variable- and person-focused methodologies were used to explore these associations. Low resilience was associated with higher distress, poor quality of life, and poor glycemic control. Participants with low resilience used more maladaptive coping strategies and were at greatest risk of poor outcomes. Findings suggest that resilience is a promising candidate for interventions designed to reduce distress and improve outcomes for adolescents with type 1 diabetes.

Promoting Resilience in Stress Management: A Pilot Study of a Novel Resilience-Promoting Intervention for Adolescents and Young Adults With Serious Illness

OBJECTIVE To examine the feasibility and format of the Promoting Resilience in Stress Management (PRISM) intervention among two groups of adolescents and young adults (AYAs) at-risk for poor outcomes: those with Type 1 diabetes (T1D) or cancer. METHODS PRISM consists of two long or four short skills-based modules. English-speaking patients 12-25 years old were eligible if they had T1D for >6 months or cancer for >2 weeks. Feasibility was defined as an 80% completion rate and high satisfaction. Ongoing monitoring shaped iterative refinement of disease-specific approach. RESULTS 12 of 15 patients with T1D (80%) completed the two-session intervention. 3 of 15 patients with cancer declined to complete the two-session version, citing prohibitive length of individual sessions. 12 (80%) completed the four-session version. Patient-reported satisfaction was high across groups. CONCLUSIONS The PRISM intervention is feasible and well-accepted by AYAs with cancer or T1D. Differences in patient populations warrant differences in approach.

Psychosocial Follow-Up in Survivorship as a Standard of Care in Pediatric Oncology

Childhood cancer survivors (CCS) have a high risk of medical late effects following cancer therapy. Psychosocial late effects are less often recognized. Many CCS do not receive long‐term follow‐up (LTFU) care, and those who do are rarely screened for psychosocial late effects. An interdisciplinary team conducted a systematic review of qualitative and quantitative studies to assess social, educational, vocational, psychological, and behavioral outcomes along with factors related to receipt of LTFU care. We propose that psychosocial screening be considered a standard of care in long‐term follow‐up care and that education be provided to promote the use LTFU care starting early in the treatment trajectory.

Resilience, health, and quality of life among long‐term survivors of hematopoietic cell transplantation

Low patient‐reported resilience is associated with an ongoing risk of poor health and psychosocial outcomes. Using a large cross‐sectional sample of survivors of hematopoietic cell transplantation (HCT), this study explored associations between patient‐reported resilience, psychological distress, posttraumatic growth, and health‐related quality of life.