Quality Improvement Project - "My Logbook! - I Know my Way Around!"; ("Mein Logbuch - Ich Kenne Mich Aus!")
Condition: Brain Tumor; Neurofibromatoses; Sarcoma; Leukemia; Hematologic Diseases; Neuroblastoma
MeSH terms: Neuroblastoma; Neurofibromatoses; Neurofibromatosis 1; Neurofibroma; Hematologic Diseases
Study type: Interventional

Summary: 
      In this study, the main goal is to implement and evaluate a novel, evidence-based
      psycho-educative program for children in oncological care. Patients are provided with
      booklets tailored to each specific stage of their treatment. Among other factors, children's
      emotional well-being is evaluated as well as feasibility. The study is carried out at
      multiple sites across Austria, Germany and Italy/South Tirol.
    

Detailed description: 
      It is well documented that the prevalence of mental disorders in childhood cancer survivors
      is twice to quadruple compared to healthy controls. Effects range from impaired emotional
      balance, fear of recidivisms, helplessness, depression to post traumatic stress disorder.

      As a basis for interventions to preventively address these issues and moreover, to achieve
      defined psychosocial goals in the field of paediatric oncology, guidelines and standards
      systematically describe stressors and resources in particularly challenging situations.
      Nevertheless, despite these guidelines, actual care is quite heterogenous due to differences
      in setting, provision and profession. Studies show that integrated models of psychosocial
      care yield better outcomes. Integrated care systems can enhance patient satisfaction,
      increase perceived quality of care, and enable access to services and reduce service costs.
      Highly complex, system-wide interventions such as models of integrated care represent
      considerable challenges for operationalisation of relevant factors and evaluation of whole
      processes compared to single interventions (e.g. relaxation techniques). Quality improvement
      (QI) is an iterative process designed to make controlled changes within the health care
      delivery system to provide patients with high-quality care that meets both their expectations
      and needs. In terms of quality assurance, this QI Project aims to operationalize
      recommendations of the S3 guideline for psychosocial care which results in a combined
      process- and patient-oriented intervention and evaluation tool - bridging the gap between
      standards/evidence and clinical practice.

      The "Onco-Mini-Version" of "My Logbook - I know my way around" already comprises a
      Starter-Kit and 8 booklets, which cover at least one main issue of every treatment phase:
      initial contact, medical assessment (MRI), supportive therapy (chemotherapy, radio therapy),
      rehabilitation and after-care. All interventions are carried out by a clinical psychologist
      or psychosocial staff specialized in pediatric psychooncology and are understood as part of
      an integrated care system. Every booklet provides practical materials with enhanced
      stimulating elements to encourage the child to explore actively. The booklets are structured
      in two face-to-face sessions covering psychoeducational, activity & practice and reflective
      aspects.

      The core of this QI project is a multilevel and interdisciplinary approach characterized by
      iterative processes. PDSA (Plan, Do, Study, Act) cycles were applied in all steps of
      conceptualization and implementation of this project. It aims to systematically improve
      psychosocial care of pediatric cancer patients through being implemented in a large number of
      hospitals in the German-speaking world. The proposed multicenter pilot phase promotes
      emotional well-being and level of information of the child during treatment through transfer
      of knowledge and coping skills. Moreover, it addresses feasibility of the tool but also the
      impact of medical procedures on feasibility. In the long term, the program is intended to
      help attenuate psychological late effects of oncological conditions and their treatments.
    

Intervention name(s): "My Logbook! - I know my way around!"
Intervention type(s): Other
Intervention description(s): Special issues/booklets of "My Logbook - I know my way around!" - Every booklet is based on evidence-based interventions. It illustrates psychosocial and interdisciplinary processes in a standardized way, resulting in a practical guide ("My Logbook") to accompany the child throughout all stages of oncological treatment.
Intervention model: Single Group Assignment
Masking: None (Open Label)
Primary purpose: Treatment