Development of a Conceptual Model for Pediatric Oncology Results from a Review of Qualitative Research Literature and Clinician Interviews

Abstract

Objectives: Childhood cancer's profound effects should be assessed appropriately within clinical trials: however, a conceptual model is required to help design appropriate measurement strategies. The aim of this study was to develop an initial pediatric oncology conceptual model. Methods: Key databases were searched for articles focused on qualitative research with children (ages 0-18) with cancer and/or their caregivers. Four patient/parent internet forums were reviewed. Telephone interviews with five pediatric oncology clinicians were performed. Data were analyzed using grounded theory methods. Results: 112 qualitative studies were reviewed. Few studies presented data by specific cancer type/stage or child age; blogs/clinician interviews provided insights into these areas. Across cancer types, but especially for hematological cancers, pain, fatigue, and “feeling unwell”/fever were emphasized, as well as impacts on daily functioning. For brain tumors, headaches, sudden lack of coordination/balance, blurred vision, seizures, vomiting, dizziness and cognition-related impacts on mood and language were highlighted. For solid tumors, tumor-location pain often led to related mobility and/or functioning problems; clinicians emphasized lymphadenopathy and weight loss. Adolescents appeared to be most impacted by cancer, due to their grasp of the cancer's gravity, self-image issues, loss of autonomy, school absences and social life limitations. Though patients/parents/clinicians found it difficult to distinguish between treatment- and cancer-related symptoms, treatments caused several problems, such as neutropenia, changes in appearance, irritability, nausea/vomiting, fatigue and pain. Not emphasized by clinicians but reported frequently in literature/blogs, mucositis and changes in tastes concerned parents/children. Clinicians strongly emphasized shortterm/ long-term/working memory loss and that anxiety contributed to the occurrence/ severity of other side-effects/impacts. Conclusions: Cancer's impact on children is multifaceted and complicated. Issues identified in this review that must be considered when designing outcomes strategies are: the child's age, cancer type and stage, delineating disease and treatment symptoms/impacts, and short/long term side effects impacts on nutrition and development.