Symptom appraisal in uncertainty: A theory-driven thematic analysis with survivors of childhood cancer

Objective: Somatic symptoms capture attention, demand interpretation, and promote health behaviors. Symptom appraisal is particularly impactful within uncertain health contexts such as cancer survivorship. Yet, little is known about how individuals make sense of somatic symptoms within uncertain health contexts, nor how this process guides health behaviors. Design: 25 adolescent and young adult survivors of childhood cancer completed semi-structured interviews regarding how they appraise and respond to changing somatic sensations within the uncertain context of survivorship. Main Outcome Measures: Interviews were transcribed verbatim and subjected to a hybrid deductive-inductive thematic analysis, guided by the Cancer Threat Interpretation model. Results: Theme 1 (‘symptoms as signals of bodily threat’) captured that participants commonly interpret everyday sensations as indicating cancer recurrence or new illness. Theme 2 (‘playing detective with bodily signals’) captured the cognitive and behavioral strategies that participants described using to determine whether somatic sensations indicated a health threat. These two themes are qualified by the recognition that post-cancer symptoms are wily and influenced by psychological factors such as anxiety (Theme 3: ‘living with symptom-related uncertainty’). Conclusions: These data highlight the need for novel symptom management approaches that target how somatic sensations are appraised and responded to as signals of bodily threat.<br/

Parent-clinician communication intervention during end-of-life decision making for children with incurable cancer.

Background: In this single-site study, we evaluated the feasibility of a parent-clinician communication intervention designed to: identify parents\u27 rationale for the phase I, do-not-resuscitate (DNR), or terminal care decision made on behalf of their child with incurable cancer; identify their definition of being a good parent to their ill child; and provide this information to the child\u27s clinicians in time to be of use in the family\u27s care. Methods: Sixty-two parents of 58 children and 126 clinicians participated. Within 72 hours after the treatment decision, parents responded to 6 open-ended interview questions and completed a 10-item questionnaire about the end-of-life communication with their child\u27s clinicians. They completed the questionnaire again two to three weeks later and responded to three open-ended questions to assess the benefit:risk ratio of their study participation three months after the intervention. Clinicians received the interview data within hours of the parent interview and evaluated the usefulness of the information three weeks later. Results: All preestablished intervention feasibility criteria were met; 77.3% of families consented; and in 100% of interventions, information was successfully provided individually to 3 to 11 clinicians per child before the child died. No harm was reported by parents as a result of participating; satisfaction and other benefits were reported. Clinicians reported moderate to strong satisfaction with the intervention. Conclusion: The communication intervention was feasible within hours of decision making, was acceptable and beneficial without harm to participating parents, and was acceptable and useful to clinicians in their care of families

Refinement of risk stratification for childhood rhabdomyosarcoma using FOXO1 fusion status in addition to established clinical outcome predictors: A report from the Children's Oncology Group

Background: Previous studies of the prognostic importance of FOXO1 fusion status in patients with rhabdomyosarcoma (RMS) have had conflicting results. We re�examined risk stratification by adding FOXO1 status to traditional clinical prognostic factors in children with localized or metastatic RMS. Methods: Data from six COG clinical trials (D9602, D9802, D9803, ARST0331, ARTS0431, ARST0531; two studies each for low�, intermediate� and high�risk patients) accruing previously untreated patients with RMS from 1997 to 2013 yielded 1727 evaluable patients. Survival tree regression for event�free survival (EFS) was conducted to recursively select prognostic factors for branching and split. Factors included were age, FOXO1, clinical group, histology, nodal status, number of metastatic sites, primary site, sex, tumor size, and presence of metastases in bone/bone marrow, soft tissue, effusions, lung, distant lymph nodes, and other sites. Definition and outcome of the proposed risk groups were compared to existing systems and cross�validated results. Results: The 5�year EFS and overall survival (OS) for evaluable patients were 69% and 79%, respectively. Extent of disease (localized versus metastatic) was the first split (EFS 73% vs 30%; OS 84% vs. 42%). FOXO1 status (positive vs negative) was significant in the second split both for localized (EFS 52% vs 78%; OS 65% vs 88%) and metastatic disease (EFS 6% vs 46%; OS 19% vs 58%). Conclusions: After metastatic status, FOXO1 status is the most important prognostic factor in patients with RMS and improves risk stratification of patients with localized RMS. Our findings support incorporation of FOXO1 status in risk stratified clinical trials