title: [Network for Oncological Advisory Service (NOF) - a Pilot Project for (Long-Term) Follow-Up Care of Pediatric Cancer Patients].
abstract: Background:In Germany some 2 000 children and adolescent are diagnosed with cancer every year. Curing rates are increasing and therewith also the number of survivors is growing. Survivors frequently suffer from long-term effects of the disease and its treatment, but long-term follow-up care shows deficits.Method:The Network for oncological advisory service (NOF) started in 11/2013, researching and building up a network of available support in Lower Saxony. A telephone hotline was installed in 01/2014 in order to advice survivors on their problems. At the same time, an interview study on survivors needs was conducted throughout Germany.Results:In the first 2 years, the NOF gave advice to 79 patients. Whilst enquiries of medical or psychological nature were transferred to the cooperation partner, requests on psychosocial and social legal issues are being deled by the NOF due to lack of appropriate partners. The evaluation of 25 interviews shows key issues in long-term after-care: (1) transition from acute therapy to everyday life, (2) problems due to pediatric cancer and therapy, (3) patients perception of own disposition, (4) social reactions towards survivors, (5) structure of long-term follow-up care, (6) information flow.Conclusion:Many survivors suffer from long-term effects of cancer and treatment. The lack of available contact person and being in limbo between cured and simultaneously affected by the cancer treatment and chronic diseases is perceived as being problematic. This translates to various requirements on a patient-oriented long-term care, mainly in the psychosocial field.
authors.affiliation: Netzwerk für die Versorgung schwerkranker Kinder und Jugendlicher e.V., Hannover Medical School, Hannover.
authors.forename: K
authors.initials: K
authors.lastname: Kremeike
authors.affiliation: Netzwerk für die Versorgung schwerkranker Kinder und Jugendlicher e.V., Hannover Medical School, Hannover.
authors.forename: A
authors.initials: A
authors.lastname: Mohr
authors.affiliation: Netzwerk für die Versorgung schwerkranker Kinder und Jugendlicher e.V., Hannover Medical School, Hannover.
authors.forename: R
authors.initials: R
authors.lastname: Kampschulte
authors.affiliation: Ethno-Medical Centre, Hannover.
authors.forename: J
authors.initials: J
authors.lastname: Bergmann
authors.affiliation: Netzwerk für die Versorgung schwerkranker Kinder und Jugendlicher e.V., Hannover Medical School, Hannover.
authors.forename: S
authors.initials: S
authors.lastname: Beil
authors.affiliation: Netzwerk für die Versorgung schwerkranker Kinder und Jugendlicher e.V., Hannover Medical School, Hannover.
authors.forename: U
authors.initials: U
authors.lastname: Neuhaus
authors.affiliation: Institute of Epidemiology Social Medicine and Health System Research, Hannover Medical School, Hannover.
authors.forename: M-L
authors.initials: ML
authors.lastname: Dierks
authors.affiliation: Mühlenkreis Clinics, Initiative Eltern krebskranker Kinder Minden e.V., Minden.
authors.forename: C
authors.initials: C
authors.lastname: Driftmann
authors.affiliation: Paediatric Hematology and Oncology, Bremen Central Hospital, Bremen.
authors.forename: A
authors.initials: A
authors.lastname: Duhr
authors.affiliation: Clinic of Paediatric and Youth Medicine and Psychosomatics, City Hospital Wolfsburg, Wolfsburg.
authors.forename: S
authors.initials: S
authors.lastname: Groeneveld
authors.affiliation: Department of Paediatric Haematology and Oncology, Hospital Oldenburg, Oldenburg.
authors.forename: M
authors.initials: M
authors.lastname: Kaspar
authors.affiliation: Department of Paediatric Haematology and Oncology, Hannover Medical School, Hannover.
authors.forename: G
authors.initials: G
authors.lastname: Kowollik
authors.affiliation: Parents` house Göttingen, Elterninitiative für das krebskranke Kind Göttingen e.V., Göttingen.
authors.forename: H-H
authors.initials: HH
authors.lastname: Miest
authors.affiliation: Department of Paediatric Haematology and Oncology, Municipal Clinic of Braunschweig, Braunschweig.
authors.forename: I
authors.initials: I
authors.lastname: Schene
authors.affiliation: Clinic for Pediatrics III, University Hospital Essen, Essen, Germany.
authors.forename: D
authors.initials: D
authors.lastname: Reinhardt
mesh_terms: D000293:Adolescent; D000328:Adult; D000359:Aftercare / Q000458:organization & administration*; D002648:Child; D003253:Consultants; D005069:Evaluation Studies as Topic; D005500:Follow-Up Studies; D005858:Germany; D006301:Health Services Needs and Demand / Q000458:organization & administration; D015277:Hotlines / Q000458:organization & administration*; D006801:Humans; D033183:Interdisciplinary Communication; D000070516:Intersectoral Collaboration; D007406:Interview, Psychological; D008134:Long-Term Care / Q000458:organization & administration*; D010348:Patient Care Team / Q000458:organization & administration*; D017060:Patient Satisfaction; D010865:Pilot Projects; D012017:Referral and Consultation / Q000458:organization & administration*; D017741:Survivors; D000069341:Transitional Care / Q000458:organization & administration; D055815:Young Adult