Skip to main content
Top
Published in: BMC Primary Care 1/2020

Open Access 01-12-2020 | Care | Study protocol

Evaluation of two family-based intervention programs for children affected by rare disease and their families – research network (CARE-FAM-NET): study protocol for a rater-blinded, randomized, controlled, multicenter trial in a 2x2 factorial design

Authors: Johannes Boettcher, Bonnie Filter, Jonas Denecke, Amra Hot, Anne Daubmann, Antonia Zapf, Karl Wegscheider, Jan Zeidler, J.-Matthias Graf von der Schulenburg, Monika Bullinger, Miriam Rassenhofer, Michael Schulte-Markwort, Silke Wiegand-Grefe

Published in: BMC Primary Care | Issue 1/2020

Login to get access

Abstract

Background

Families of children with rare diseases (i.e., not more than 5 out of 10,000 people are affected) are often highly burdened with fears, insecurities and concerns regarding the affected child and its siblings. Although families caring for children with rare diseases are known to be at risk for mental disorders, the evaluation of special programs under high methodological standards has not been conducted so far. Moreover, the implementation of interventions for this group into regular care has not yet been accomplished in Germany. The efficacy and cost-effectiveness of a family-based intervention will be assessed.

Methods/design

The study is a 2x2 factorial randomized controlled multicenter trial conducted at 17 study centers throughout Germany. Participants are families with children and adolescents affected by a rare disease aged 0 to 21 years. Families in the face-to-face intervention CARE-FAM, online intervention WEP-CARE or the combination of both will be treated over a period of roughly 6 months. Topics discussed in the interventions include coping, family relations, and social support. Families in the control condition will receive treatment as usual. The primary efficacy outcome is parental mental health, measured by the Structured Clinical Interview for DSM-IV (SCID-I) by blinded external raters. Further outcomes will be assessed from the parents’ as well as the children’s perspective. Participants are investigated at baseline, 6, 12 and 18 months after randomization. In addition to the assessment of various psychosocial outcomes, a comprehensive health-economic evaluation will be performed.

Discussion

This paper describes the implementation and evaluation of two family-based intervention programs for Children Affected by Rare Disease and their Family’s Network (CARE-FAM-NET) in German standard care. A methodologically challenging study design is used to reflect the complexity of the actual medical care situation. This trial could be an important contribution to the improvement of care for this highly burdened group.

Trial registration

German Clinical Trials Register: DRKS00015859 (registered 18 December 2018) and ClinicalTrials.​gov: NCT04339465 (registered 8 April 2020).
Protocol Version: 15 August 2020 (Version 6.1).
Trial status: Recruitment started on 1 January 2019 and will be completed on 31 March 2021.
Appendix
Available only for authorised users
Literature
2.
go back to reference Wetterauer B, Schuster R. Seltene Krankheiten - Probleme, Stand und Entwicklung der nationalen und europäischen Forschungsförderung [Rare diseases. Funding programs in Germany and Europe]. Bundesgesundheitsblatt Gesundheitsforsch Gesundheitsschutz. 2008;51(5):519–28.CrossRef Wetterauer B, Schuster R. Seltene Krankheiten - Probleme, Stand und Entwicklung der nationalen und europäischen Forschungsförderung [Rare diseases. Funding programs in Germany and Europe]. Bundesgesundheitsblatt Gesundheitsforsch Gesundheitsschutz. 2008;51(5):519–28.CrossRef
4.
go back to reference Frank M, Eidt-Koch D, Aumann I, Reimann A, Wagner TOF, von der Schulenburg JM. Maßnahmen zur Verbesserung der gesundheitlichen Situation von Menschen mit seltenen Erkrankungen in Deutschland. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2014;57(10):1216–23.CrossRef Frank M, Eidt-Koch D, Aumann I, Reimann A, Wagner TOF, von der Schulenburg JM. Maßnahmen zur Verbesserung der gesundheitlichen Situation von Menschen mit seltenen Erkrankungen in Deutschland. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2014;57(10):1216–23.CrossRef
5.
go back to reference Cohen JS, Biesecker BB. Quality of life in rare genetic conditions: a systematic review of the literature. Am J Med Genet. 2010;152A(5):1136–56.CrossRef Cohen JS, Biesecker BB. Quality of life in rare genetic conditions: a systematic review of the literature. Am J Med Genet. 2010;152A(5):1136–56.CrossRef
6.
go back to reference van Oers HA, Haverman L, Limperg PF, van Dijk-Lokkart EM, Maurice-Stam H, Grootenhuis MA. Anxiety and depression in mothers and fathers of a chronically ill child. Matern Child Health J. 2014;18(8):1993–2002.CrossRef van Oers HA, Haverman L, Limperg PF, van Dijk-Lokkart EM, Maurice-Stam H, Grootenhuis MA. Anxiety and depression in mothers and fathers of a chronically ill child. Matern Child Health J. 2014;18(8):1993–2002.CrossRef
7.
go back to reference Toly VB, Musil CM, Carl JC. A longitudinal study of families with technology-dependent children. Res Nurs Health. 2012;35(1):40–54.CrossRef Toly VB, Musil CM, Carl JC. A longitudinal study of families with technology-dependent children. Res Nurs Health. 2012;35(1):40–54.CrossRef
8.
go back to reference Lavigne JV, Faier-Routman J. Psychological adjustment to pediatric physical disorders: a meta-analytic review. J Pediatr Psychol. 1992;17(2):133–57.CrossRef Lavigne JV, Faier-Routman J. Psychological adjustment to pediatric physical disorders: a meta-analytic review. J Pediatr Psychol. 1992;17(2):133–57.CrossRef
9.
go back to reference Limbers CA, Skipper S. Health-related quality of life measurement in siblings of children with physical chronic illness: a systematic review. Fam Syst Health. 2014;32(4):408.CrossRef Limbers CA, Skipper S. Health-related quality of life measurement in siblings of children with physical chronic illness: a systematic review. Fam Syst Health. 2014;32(4):408.CrossRef
10.
go back to reference Morgenstern L, Wagner M, Denecke J, Grolle B, Johannsen J, Wegscheider K et al. Psychosozialer Unterstützungsbedarf von Eltern mit schwer chronisch somatisch erkrankten Kindern. Prax Kinderpsychol Kinderpsychiatr. 2017;66(9):687–701. Morgenstern L, Wagner M, Denecke J, Grolle B, Johannsen J, Wegscheider K et al. Psychosozialer Unterstützungsbedarf von Eltern mit schwer chronisch somatisch erkrankten Kindern. Prax Kinderpsychol Kinderpsychiatr. 2017;66(9):687–701.
11.
go back to reference Smith J, Cheater F, Bekker H. Parents’ experiences of living with a child with a long-term condition: a rapid structured review of the literature. Health Expect. 2015;18(4):452–74.CrossRef Smith J, Cheater F, Bekker H. Parents’ experiences of living with a child with a long-term condition: a rapid structured review of the literature. Health Expect. 2015;18(4):452–74.CrossRef
12.
go back to reference Anderson M, Elliott EJ, Zurynski Y. Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support. Orphanet J Rare Dis. 2013;8(1):22.CrossRef Anderson M, Elliott EJ, Zurynski Y. Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support. Orphanet J Rare Dis. 2013;8(1):22.CrossRef
13.
go back to reference Mattejat F, Wüthrich C, Remschmidt H. Children of parents of psychiatric disorders. Examplary discusses of research perspectives in invastigations of children with depressiv parents. Nervenarzt. 2000;71:164–72.CrossRef Mattejat F, Wüthrich C, Remschmidt H. Children of parents of psychiatric disorders. Examplary discusses of research perspectives in invastigations of children with depressiv parents. Nervenarzt. 2000;71:164–72.CrossRef
14.
go back to reference Wiegand-Grefe S, Halverscheid S, Plass A. Kinder und ihre psychisch kranken Eltern: familienorientierte Prävention-der CHIMPs-Beratungsansatz. Göttingen: Hogrefe; 2011. Wiegand-Grefe S, Halverscheid S, Plass A. Kinder und ihre psychisch kranken Eltern: familienorientierte Prävention-der CHIMPs-Beratungsansatz. Göttingen: Hogrefe; 2011.
15.
go back to reference Fidika A, Herle M, Lehmann C, Weiss C, Knaevelsrud C, Goldbeck L. A web-based psychological support program for caregivers of children with cystic fibrosis: A pilot study. Health Qual Life Outcomes. 2015;13(11). Fidika A, Herle M, Lehmann C, Weiss C, Knaevelsrud C, Goldbeck L. A web-based psychological support program for caregivers of children with cystic fibrosis: A pilot study. Health Qual Life Outcomes. 2015;13(11).
16.
go back to reference Chan A-W, Tetzlaff JM, Altman DG, Laupacis A, Gøtzsche PC, Krleža-Jerić K, et al. SPIRIT 2013 statement: defining standard protocol items for clinical trials. Ann Intern Med. 2013;158(3):200.CrossRef Chan A-W, Tetzlaff JM, Altman DG, Laupacis A, Gøtzsche PC, Krleža-Jerić K, et al. SPIRIT 2013 statement: defining standard protocol items for clinical trials. Ann Intern Med. 2013;158(3):200.CrossRef
17.
go back to reference Wiegand-Grefe S. Psychodynamische Interventionen in Familien mit chronischer Krankheit. Psychodynamische Interventionen in Familien mit chronischer Krankheit. Göttingen: Vandenhoeck & Ruprecht; 2017.CrossRef Wiegand-Grefe S. Psychodynamische Interventionen in Familien mit chronischer Krankheit. Psychodynamische Interventionen in Familien mit chronischer Krankheit. Göttingen: Vandenhoeck & Ruprecht; 2017.CrossRef
18.
go back to reference West CA, Besier T, Borth-Bruhns T, Goldbeck L. Effectiveness of a family-oriented rehabilitation program on the quality of life of parents of chronically ill children. Klin Padiatr. 2009;221(4):241–6.CrossRef West CA, Besier T, Borth-Bruhns T, Goldbeck L. Effectiveness of a family-oriented rehabilitation program on the quality of life of parents of chronically ill children. Klin Padiatr. 2009;221(4):241–6.CrossRef
19.
go back to reference Goldbeck L, Hölling I, Schlack R, West C, Besier T. The impact of an inpatient family-oriented rehabilitation program on parent-reported psychological symptoms of chronically ill children. Klin Pädiatrie. 2011;223(02):79–84.CrossRef Goldbeck L, Hölling I, Schlack R, West C, Besier T. The impact of an inpatient family-oriented rehabilitation program on parent-reported psychological symptoms of chronically ill children. Klin Pädiatrie. 2011;223(02):79–84.CrossRef
20.
go back to reference Seitz DCM, Knaevelsrud C, Duran G, Waadt S, Loos S, Goldbeck L. Efficacy of an internet-based cognitive-behavioral intervention for long-term survivors of pediatric cancer: a pilot study. Support Care Cancer. 2014;22(8):2075–83.CrossRef Seitz DCM, Knaevelsrud C, Duran G, Waadt S, Loos S, Goldbeck L. Efficacy of an internet-based cognitive-behavioral intervention for long-term survivors of pediatric cancer: a pilot study. Support Care Cancer. 2014;22(8):2075–83.CrossRef
21.
go back to reference Wittchen H-U, Wunderlich U, Gruschwitz S, Zaudig M. SKID I. Strukturiertes Klinisches Interview für DSM-IV. Achse I: Psychische Störungen. Interviewheft und Beurteilungsheft. Eine deutschsprachige, erweiterte Bearb. d. amerikanischen Originalversion des SKID I. Göttingen: Hogrefe; 1997. Wittchen H-U, Wunderlich U, Gruschwitz S, Zaudig M. SKID I. Strukturiertes Klinisches Interview für DSM-IV. Achse I: Psychische Störungen. Interviewheft und Beurteilungsheft. Eine deutschsprachige, erweiterte Bearb. d. amerikanischen Originalversion des SKID I. Göttingen: Hogrefe; 1997.
22.
go back to reference Hinz A, Klaiberg A, Brähler E, König H. The quality of life questionnaire EQ−5D: Modelling and norm values for the general population. Psychother Psychosom Med Psychol. 2006;56(2):42–8.CrossRef Hinz A, Klaiberg A, Brähler E, König H. The quality of life questionnaire EQ−5D: Modelling and norm values for the general population. Psychother Psychosom Med Psychol. 2006;56(2):42–8.CrossRef
23.
go back to reference Ravens-Sieberer U, Wille N, Badia X, Bonsel G, Burström K, Cavrini G, et al. Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study. Qual Life Res. 2010;19(6):887–97.CrossRef Ravens-Sieberer U, Wille N, Badia X, Bonsel G, Burström K, Cavrini G, et al. Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study. Qual Life Res. 2010;19(6):887–97.CrossRef
24.
go back to reference Brooks R, Rabin R, De Charro F. The measurement and valuation of health status using EQ-5D. A European perspective. Evidence from the EuroQol BIO MED Research program. New York: Springer Science and Business Media; 2003. p. 1–303. Brooks R, Rabin R, De Charro F. The measurement and valuation of health status using EQ-5D. A European perspective. Evidence from the EuroQol BIO MED Research program. New York: Springer Science and Business Media; 2003. p. 1–303.
25.
go back to reference Goldbeck L, Storck M. Das Ulmer Lebensqualitäts-Inventar für Eltern chronisch kranker Kinder (ULQIE). Z Klin Psychol Psychother. 2002;31(1):31–9.CrossRef Goldbeck L, Storck M. Das Ulmer Lebensqualitäts-Inventar für Eltern chronisch kranker Kinder (ULQIE). Z Klin Psychol Psychother. 2002;31(1):31–9.CrossRef
26.
go back to reference Ware JE, Kosinski M, Keller SD. A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Med Care. 1996;34(3):220–33.CrossRef Ware JE, Kosinski M, Keller SD. A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Med Care. 1996;34(3):220–33.CrossRef
27.
go back to reference DISABKIDS Group. The DISABKIDS questionnaires-quality of life questionnaires for children with chronic conditions. Lengerich: Pabst Science Publishers; 2006. DISABKIDS Group. The DISABKIDS questionnaires-quality of life questionnaires for children with chronic conditions. Lengerich: Pabst Science Publishers; 2006.
28.
go back to reference The KIDSCREEN Group Europe. The KIDSCREEN questionnaires: quality of life questionnaires for children and adolescents. Lengerich: Pabst Science Publishers; 2006. The KIDSCREEN Group Europe. The KIDSCREEN questionnaires: quality of life questionnaires for children and adolescents. Lengerich: Pabst Science Publishers; 2006.
29.
go back to reference Ravens-Sieberer U, Erhart M, Rajmil L, Herdman M, Auquier P, Bruil J, et al. Reliability, construct and criterion validity of the KIDSCREEN-10 score: a short measure for children and adolescents’ well-being and health-related quality of life. Qual Life Res. 2010;19(10):1487–500.CrossRef Ravens-Sieberer U, Erhart M, Rajmil L, Herdman M, Auquier P, Bruil J, et al. Reliability, construct and criterion validity of the KIDSCREEN-10 score: a short measure for children and adolescents’ well-being and health-related quality of life. Qual Life Res. 2010;19(10):1487–500.CrossRef
30.
go back to reference Bouwmans C, van Der Kolk A, Oppe M, Schawo S, Stolk E, van Agthoven M, et al. Validity and responsiveness of the EQ-5D and the KIDSCREEN-10 in children with ADHD. Eur J Health Econ. 2014;15(9):967–77.CrossRef Bouwmans C, van Der Kolk A, Oppe M, Schawo S, Stolk E, van Agthoven M, et al. Validity and responsiveness of the EQ-5D and the KIDSCREEN-10 in children with ADHD. Eur J Health Econ. 2014;15(9):967–77.CrossRef
31.
go back to reference Franke H. Brief Symptom Inventory von L.R. Derogatis (Kurzform der SCL-90-R). Deutsche Version. Manual. Göttingen: Beltz Test Gesellschaft; 2000. Franke H. Brief Symptom Inventory von L.R. Derogatis (Kurzform der SCL-90-R). Deutsche Version. Manual. Göttingen: Beltz Test Gesellschaft; 2000.
32.
go back to reference Löwe B, Spitzer RL, Zipfel S, Herzog W. Gesundheitsfragebogen für Patienten (PHQ-D). Komplettversion und Kurzform. Autorisierte deutsche Version des “Prime MD Patient Health Questionnaire (PHQ)”. Karlsruhe: Pfizer; 2002. Löwe B, Spitzer RL, Zipfel S, Herzog W. Gesundheitsfragebogen für Patienten (PHQ-D). Komplettversion und Kurzform. Autorisierte deutsche Version des “Prime MD Patient Health Questionnaire (PHQ)”. Karlsruhe: Pfizer; 2002.
33.
go back to reference Saß H, Wittchen HU, Zaudig M, Houben I. Diganostisches und Statistisches Manual psychischer Störungen - Textrevision. Göttingen: Hogrefe; 2003. Saß H, Wittchen HU, Zaudig M, Houben I. Diganostisches und Statistisches Manual psychischer Störungen - Textrevision. Göttingen: Hogrefe; 2003.
34.
go back to reference Delmo C, Weiffenbach O, Gabriel M, Stadler C, Poustka F. Diagnostisches Interview Kiddie-Sads-Present and Lifetime Version (K-SADS-PL). 5. Auflage der deutschen Forschungsversion, erweitert um ICD-10-Diagnostik. Frankfurt: linik für Psychiatrie und Psychotherapie des Kindes- und Jugendalters; 2001. p. 1–241. Delmo C, Weiffenbach O, Gabriel M, Stadler C, Poustka F. Diagnostisches Interview Kiddie-Sads-Present and Lifetime Version (K-SADS-PL). 5. Auflage der deutschen Forschungsversion, erweitert um ICD-10-Diagnostik. Frankfurt: linik für Psychiatrie und Psychotherapie des Kindes- und Jugendalters; 2001. p. 1–241.
35.
go back to reference Steinhausen HC. Eine Skala zur Beurteilung psychisch gestörter Kinder und Jugendlicher. Z Kinder Jugendpsychiatr. 1985;13(3):230–40.PubMed Steinhausen HC. Eine Skala zur Beurteilung psychisch gestörter Kinder und Jugendlicher. Z Kinder Jugendpsychiatr. 1985;13(3):230–40.PubMed
36.
go back to reference Arbeitsgruppe Deutsche Child Behavior Checklist. Elternfragebogen über das Verhalten von Kindern und Jugendlichen; deutsche Bearbeitung der Child Behavior Checklist (CBCL/4–18). Einführung und Anleitung zur Handauswertung. 2. Auflage mit deutschen Normen, Bearbeitet von M. Döpfner, J. Plück, S. Böl. Cologne: Arbeitsgruppe Kinder-, Jugend- und Familiendiagnostik (KJFD). 1998. Arbeitsgruppe Deutsche Child Behavior Checklist. Elternfragebogen über das Verhalten von Kindern und Jugendlichen; deutsche Bearbeitung der Child Behavior Checklist (CBCL/4–18). Einführung und Anleitung zur Handauswertung. 2. Auflage mit deutschen Normen, Bearbeitet von M. Döpfner, J. Plück, S. Böl. Cologne: Arbeitsgruppe Kinder-, Jugend- und Familiendiagnostik (KJFD). 1998.
37.
go back to reference Arbeitsgruppe Deutsche Child Behavior Checklist. Fragebogen für Jugendliche; deutsche Bearbeitung des Youth Self Report (YSR) der Child Behavior Checklist. Einführung und Anleitung zur Handauswertung. 2. Auflage mit deutschen Normen, bearbeitet von M. Döpfner, J. Plück, S. Bölte, K. Lenz, P. Melchers & . Cologne: Arbeitsgruppe Kinder-, Jugend- und Familiendiagnostik (KJFD). 1998. Arbeitsgruppe Deutsche Child Behavior Checklist. Fragebogen für Jugendliche; deutsche Bearbeitung des Youth Self Report (YSR) der Child Behavior Checklist. Einführung und Anleitung zur Handauswertung. 2. Auflage mit deutschen Normen, bearbeitet von M. Döpfner, J. Plück, S. Bölte, K. Lenz, P. Melchers & . Cologne: Arbeitsgruppe Kinder-, Jugend- und Familiendiagnostik (KJFD). 1998.
38.
go back to reference McCubbin HI, McCubbin MA, Cauble E, Goldbeck L. Fragebogen zur elterlichen krankheitsbewältigung: coping health inventory for parents (CHIP)-deutsche version. Kindheit Entwicklung. 2001;10(1):28–35.CrossRef McCubbin HI, McCubbin MA, Cauble E, Goldbeck L. Fragebogen zur elterlichen krankheitsbewältigung: coping health inventory for parents (CHIP)-deutsche version. Kindheit Entwicklung. 2001;10(1):28–35.CrossRef
39.
go back to reference Spirito A, Stark LJ, Williams C. Development of a brief coping checklist for use with pediatric populations. J Pediatr Psychol. 1988;13(4):555–74.CrossRef Spirito A, Stark LJ, Williams C. Development of a brief coping checklist for use with pediatric populations. J Pediatr Psychol. 1988;13(4):555–74.CrossRef
40.
go back to reference Meltzer H. Development of a common instrument for mental health, i Novisky and Gudex (eds.) EUROHIS: Developing Common Instruments for Health Surveys. IOS Press. 2003. Meltzer H. Development of a common instrument for mental health, i Novisky and Gudex (eds.) EUROHIS: Developing Common Instruments for Health Surveys. IOS Press. 2003.
41.
go back to reference Bojanowski S, Riestock N, Nisslein J, Weschenfelder-Stachwitz H, Lehmkuhl U. Psychometric properties of the sibling relationship questionnaire in the German version (SRQ-deu). Psychother Psychosom Med Psychol. 2015;65(9):370–8.PubMed Bojanowski S, Riestock N, Nisslein J, Weschenfelder-Stachwitz H, Lehmkuhl U. Psychometric properties of the sibling relationship questionnaire in the German version (SRQ-deu). Psychother Psychosom Med Psychol. 2015;65(9):370–8.PubMed
42.
go back to reference Hahlweg K. Fragebogen zur Partnerschaftsdiagnostik. 2., neu normierte und und erweiterte Auflage. Göttingen: Hogrefe; 2016. Hahlweg K. Fragebogen zur Partnerschaftsdiagnostik. 2., neu normierte und und erweiterte Auflage. Göttingen: Hogrefe; 2016.
43.
go back to reference van Dyck Z, Hilbert A. Eating disorders in youth-questionnaire. Deutsche version. Leipzig: Universität Leipzig; 2016. van Dyck Z, Hilbert A. Eating disorders in youth-questionnaire. Deutsche version. Leipzig: Universität Leipzig; 2016.
44.
go back to reference Richter F, Strauß B, Berger U. Brief instruments in German for the assessment of disordered eating. Psychother Psychosom Med Psychol. 2018;68(3):99–108.PubMed Richter F, Strauß B, Berger U. Brief instruments in German for the assessment of disordered eating. Psychother Psychosom Med Psychol. 2018;68(3):99–108.PubMed
45.
go back to reference von Gontard A, Lehmkuhle G. Leitfaden Enuresis. Göttingen: Hogrefe; 2009. p. 126–8. von Gontard A, Lehmkuhle G. Leitfaden Enuresis. Göttingen: Hogrefe; 2009. p. 126–8.
46.
go back to reference Roick C, Kilian R, Matschinger H, Bernert S, Mory C, Angermeyer MC. Die deutsche Version des Client Sociodemographic and Service Receipt Inventory: Ein Instrument zur Erfassung psychiatrischer Versorgungskosten. Psychiatr Prax. 2001;28(2):84–90. Roick C, Kilian R, Matschinger H, Bernert S, Mory C, Angermeyer MC. Die deutsche Version des Client Sociodemographic and Service Receipt Inventory: Ein Instrument zur Erfassung psychiatrischer Versorgungskosten. Psychiatr Prax. 2001;28(2):84–90.
47.
go back to reference Kilian R, Losert C, McDaid D, Park A, Knapp M, Beecham J, et al. The health economic evaluation of children and adolescent mental health services across the enlarged Europe. Ulm: Ulm University, Department of Psychiatry and Psychotherapy; 2009. Kilian R, Losert C, McDaid D, Park A, Knapp M, Beecham J, et al. The health economic evaluation of children and adolescent mental health services across the enlarged Europe. Ulm: Ulm University, Department of Psychiatry and Psychotherapy; 2009.
48.
go back to reference Mattejat F, Remschmidt H. Fragebögen zur Beurteilung der Behandlung: FBB. Göttingen: Hogrefe; 1998. Mattejat F, Remschmidt H. Fragebögen zur Beurteilung der Behandlung: FBB. Göttingen: Hogrefe; 1998.
49.
go back to reference Schmidt J, Wittmann WW. ZUF-8. Fragebogen zur Messung der Patientenzufriedenheit. In: Brähler E, Schumacher J, Strauß B, editors. Diagnostische Verfahren in der Psychotherapie. Göttingen: Hogrefe; 2002. p. 392–6. Schmidt J, Wittmann WW. ZUF-8. Fragebogen zur Messung der Patientenzufriedenheit. In: Brähler E, Schumacher J, Strauß B, editors. Diagnostische Verfahren in der Psychotherapie. Göttingen: Hogrefe; 2002. p. 392–6.
50.
go back to reference Strauss B, Strupp HH, Burgmeier-Lohse M, Wille H, Storm S. Deutschsprachige Version der Vanderbilt-Psychotherapie-Skalen: Beschreibung und Anwendung in zwei Kurztherapien. Zeitschrift Klin Psychol Psychopathol Psychother. 1992;40(4):411–30. Strauss B, Strupp HH, Burgmeier-Lohse M, Wille H, Storm S. Deutschsprachige Version der Vanderbilt-Psychotherapie-Skalen: Beschreibung und Anwendung in zwei Kurztherapien. Zeitschrift Klin Psychol Psychopathol Psychother. 1992;40(4):411–30.
Metadata
Title
Evaluation of two family-based intervention programs for children affected by rare disease and their families – research network (CARE-FAM-NET): study protocol for a rater-blinded, randomized, controlled, multicenter trial in a 2x2 factorial design
Authors
Johannes Boettcher
Bonnie Filter
Jonas Denecke
Amra Hot
Anne Daubmann
Antonia Zapf
Karl Wegscheider
Jan Zeidler
J.-Matthias Graf von der Schulenburg
Monika Bullinger
Miriam Rassenhofer
Michael Schulte-Markwort
Silke Wiegand-Grefe
Publication date
01-12-2020
Publisher
BioMed Central
Keyword
Care
Published in
BMC Primary Care / Issue 1/2020
Electronic ISSN: 2731-4553
DOI
https://doi.org/10.1186/s12875-020-01312-9

Other articles of this Issue 1/2020

BMC Primary Care 1/2020 Go to the issue