Quality Improvement Project - "My Logbook! - I Know my Way Around!"; ("Mein Logbuch - Ich Kenne Mich Aus!")

NCT ID: NCT04474678

Last Updated: 2024-01-09

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

240 participants

Study Classification

INTERVENTIONAL

Study Start Date

2020-09-07

Study Completion Date

2023-12-31

Brief Summary

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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

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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.

Conditions

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Brain Tumor Neurofibromatoses Sarcoma Leukemia Hematologic Diseases Neuroblastoma

Study Design

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Allocation Method

NA

Intervention Model

SINGLE_GROUP

Primary Study Purpose

TREATMENT

Blinding Strategy

NONE

Study Groups

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All Patients

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Group Type OTHER

"My Logbook! - I know my way around!"

Intervention Type OTHER

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.

Interventions

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"My Logbook! - I know my way around!"

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 Type OTHER

Eligibility Criteria

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Inclusion Criteria

* currently or formerly treated for oncological condition
* children/families at standard risk (Pediatric Psychosocial Preventative Health Model (PPPHM))
* at least average cognitive abilities (as measured via intelligence test)


* currently or formerly treated for oncological condition

Exclusion Criteria

* non-German speaking
* Major vision impairments
* Major auditive impairments
Minimum Eligible Age

6 Years

Maximum Eligible Age

14 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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St. Anna Kinderspital, Austria

OTHER

Sponsor Role collaborator

Charite University, Berlin, Germany

OTHER

Sponsor Role collaborator

Cnopfsche Kinderklinik, Nürnberg

UNKNOWN

Sponsor Role collaborator

Kepler University Hospital

OTHER

Sponsor Role collaborator

University Hospital, Saarland

OTHER

Sponsor Role collaborator

Hannover Medical School

OTHER

Sponsor Role collaborator

Krankenhaus Bozen

OTHER

Sponsor Role collaborator

Goethe University

OTHER

Sponsor Role collaborator

Universitätsklinikum Hamburg-Eppendorf

OTHER

Sponsor Role collaborator

Universitätsklinikum Leipzig

OTHER

Sponsor Role collaborator

University Hospital Muenster

OTHER

Sponsor Role collaborator

University Hospital Tuebingen

OTHER

Sponsor Role collaborator

Salzburger Landeskliniken

OTHER

Sponsor Role collaborator

Leuwaldhof St.Veit (Kinder- und Jugendreha)

UNKNOWN

Sponsor Role collaborator

University Hospital, Essen

OTHER

Sponsor Role collaborator

Medical University of Graz

OTHER

Sponsor Role collaborator

University Hospital Erlangen

OTHER

Sponsor Role collaborator

Wuerzburg University Hospital

OTHER

Sponsor Role collaborator

Klinik Bad Oexen, Germany

UNKNOWN

Sponsor Role collaborator

Universitätsklinikum Köln

OTHER

Sponsor Role collaborator

University Hospital Schleswig-Holstein

OTHER

Sponsor Role collaborator

University Hospital Carl Gustav Carus

OTHER

Sponsor Role collaborator

Universitätsmedizin Mannheim

OTHER

Sponsor Role collaborator

University Hospital Regensburg

OTHER

Sponsor Role collaborator

Luca-Dethlefsen-Hilfe e.V.

UNKNOWN

Sponsor Role collaborator

Insel Gruppe AG, University Hospital Bern

OTHER

Sponsor Role collaborator

Staedtisches Klinikum Karlsruhe

OTHER

Sponsor Role collaborator

Medical University of Vienna

OTHER

Sponsor Role lead

Responsible Party

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Dr. Liesa J. Weiler-Wichtl

Project Coordinator

Responsibility Role PRINCIPAL_INVESTIGATOR

Locations

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Rehabilitationszentrum St. Veit im Pongau

Sankt Veit im Pongau, Salzburg, Austria

Site Status

Kepler Universitätsklinikum

Linz, Upper Austria, Austria

Site Status

Medical University Graz

Graz, , Austria

Site Status

Medical University of Vienna

Vienna, , Austria

Site Status

St. Anna Kinderspital

Vienna, , Austria

Site Status

Universitätsklinikum Frankfurt am Main

Frankfurt am Main, Hesse, Germany

Site Status

Medizinische Hochschule Hannover

Hanover, Lower Saxony, Germany

Site Status

Universitätsklinikum Essen

Essen, North Rhine-Westphalia, Germany

Site Status

Universitätsklinikum Münster

Münster, North Rhine-Westphalia, Germany

Site Status

Universitätsklinikum des Saarlandes

Homburg, Saarland, Germany

Site Status

Universitätsklinikum Leipzig

Leipzig, Saxony, Germany

Site Status

Klinik Bad Oexen

Bad Oeynhausen, , Germany

Site Status

Charité - Universitätsmedizin Berlin

Berlin, , Germany

Site Status

Luca-Dethlefsen-Hilfe e.V.

Bielefeld, , Germany

Site Status

Universitätsklinikum Carl Gustav Carus Dresden

Dresden, , Germany

Site Status

Universitätsklinikum Hamburg-Eppendorf

Hamburg, , Germany

Site Status

Universitätsklinikum Mannheim

Mannheim, , Germany

Site Status

Universitätsklinikum Regensburg

Regensburg, , Germany

Site Status

Universitätsklinikum Tübingen

Tübingen, , Germany

Site Status

Universitätsklinikum Würzburg

Würzburg, , Germany

Site Status

Ospedale di Bolzano

Bolzano, Trentino-Alto Adige, Italy

Site Status

Inselspital, Universitätsspital Bern

Bern, , Switzerland

Site Status

Countries

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Austria Germany Italy Switzerland

References

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Kazak AE, Abrams AN, Banks J, Christofferson J, DiDonato S, Grootenhuis MA, Kabour M, Madan-Swain A, Patel SK, Zadeh S, Kupst MJ. Psychosocial Assessment as a Standard of Care in Pediatric Cancer. Pediatr Blood Cancer. 2015 Dec;62 Suppl 5:S426-59. doi: 10.1002/pbc.25730.

Reference Type BACKGROUND
PMID: 26700916 (View on PubMed)

Scialla MA, Canter KS, Chen FF, Kolb EA, Sandler E, Wiener L, Kazak AE. Delivery of care consistent with the psychosocial standards in pediatric cancer: Current practices in the United States. Pediatr Blood Cancer. 2018 Mar;65(3):10.1002/pbc.26869. doi: 10.1002/pbc.26869. Epub 2017 Oct 28.

Reference Type BACKGROUND
PMID: 29080381 (View on PubMed)

Baxter S, Johnson M, Chambers D, Sutton A, Goyder E, Booth A. The effects of integrated care: a systematic review of UK and international evidence. BMC Health Serv Res. 2018 May 10;18(1):350. doi: 10.1186/s12913-018-3161-3.

Reference Type BACKGROUND
PMID: 29747651 (View on PubMed)

Schurman JV, Gayes LA, Slosky L, Hunter ME, Pino FA. Publishing quality improvement work in Clinical Practice in Pediatric Psychology: The "why" and "how to". Clinical Practice in Pediatric Psychology. 2015 Mar; 3(1):80.

Reference Type BACKGROUND

Schröder HM, Lilienthal S, Schreiber-Gollwitzer BM, Griessmeier B, Leiss U. Psychosoziale Versorgung in der Pädiatrischen Onkologie und Hämatologie. PSAPOH (Hg.). 2013.

Reference Type BACKGROUND

Stuber ML, Meeske KA, Krull KR, Leisenring W, Stratton K, Kazak AE, Huber M, Zebrack B, Uijtdehaage SH, Mertens AC, Robison LL, Zeltzer LK. Prevalence and predictors of posttraumatic stress disorder in adult survivors of childhood cancer. Pediatrics. 2010 May;125(5):e1124-34. doi: 10.1542/peds.2009-2308.

Reference Type BACKGROUND
PMID: 20435702 (View on PubMed)

Koch U, Mehnert A, Harter M. [Chronic somatic disorders and psychological comorbidity]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2011 Jan;54(1):1-3. doi: 10.1007/s00103-010-1196-7. No abstract available. German.

Reference Type BACKGROUND
PMID: 21246321 (View on PubMed)

Weiler-Wichtl LJ, Fohn-Erhold V, Rosenmayr V, Hansl R, Hopfgartner M, Pal-Handl K, Wasinger-Brandweiner V, Herzog K, Neumann K, Schellenberg T, Schonenberger-Loppacher D, Faist-Schweika C, Schonthaler B, Budich M, Stember N, Wiegele K, Reddig M, Paduch A, Lein-Kohler I, Gorgen S, Wienands H, Gauf H, Hoffmann R, Kollmann A, Just U, Salzmann N, Neunsinger P, Gerhardt M, Essl S, Borbely J, Kopper M, Rinner S, Schubert L, Leiss U. Benefits of applying standardized frameworks to implement psychosocial tools such as the 'My Logbook'. Support Care Cancer. 2024 Nov 14;32(12):789. doi: 10.1007/s00520-024-08981-7.

Reference Type DERIVED
PMID: 39538073 (View on PubMed)

Weiler-Wichtl LJ, Fohn-Erhold V, Rosenmayr V, Hansl R, Hopfgartner M, Fries J, Schneider C, Herzog K, Schellenberg T, Schonthaler B, Stember N, Lein-Kohler I, Hoffmann R, Kollmann A, Salzmann N, Essl S, Pal-Handl K, Wasinger-Brandweiner V, Rinner S, Schubert L, Lange S, Leiss U. Preparing Children for Invasive Medical Cancer Treatment with "My Logbook": Preliminary Results of a Pilot Study. J Cancer Educ. 2025 Feb;40(1):132-141. doi: 10.1007/s13187-024-02481-2. Epub 2024 Aug 7.

Reference Type DERIVED
PMID: 39107671 (View on PubMed)

Other Identifiers

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1564/2017

Identifier Type: -

Identifier Source: org_study_id

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