Skip to main content
Top
Published in: European Child & Adolescent Psychiatry 11/2009

Open Access 01-11-2009 | Review

Pervasive refusal syndrome as part of the refusal–withdrawal–regression spectrum: critical review of the literature illustrated by a case report

Authors: Tine Jaspers, G. M. J. Hanssen, Judith A. van der Valk, Johann H. Hanekom, Gijs Th. J. van Well, Jan N. M. Schieveld

Published in: European Child & Adolescent Psychiatry | Issue 11/2009

Login to get access

Abstract

Pervasive refusal syndrome (PRS) is a rare child psychiatric disorder characterized by pervasive refusal, active/angry resistance to help and social withdrawal leading to an endangered state. Little has been written about PRS. A literature search yielded only 15 relevant articles, all published between 1991 and 2006. This article presents a critical review of the published literature, illustrated by a case report of an 11-year-old girl. PRS most often affects girls (75%). The mean age of the known population is 10.5 years. A premorbid high-achieving, perfectionist, conscientious personality seems to play an important role in the aetiology of PRS, as can a psychiatric history of parents or child and environmental stressors. PRS shows a symptom overlap with many other psychiatric disorders. However, none of the current DSM diagnoses can account for the full range of symptoms seen in PRS, and the active/angry resistance can be considered as the main distinguishing feature. Treatment should be multidisciplinary and characterized by patience, gentle encouragement and tender loving care. Hospitalization, ideally in a child and adolescent psychiatric unit, is almost always required. Although the recovery process is painfully slow (average duration of therapy 12.8 months), most children recover fully (complete recovery in 67% of known cases). In our opinion, it is important to increase knowledge of PRS, not only because of its disabling, potential life-threatening character, but also because there is hope for recovery through suitable treatment. We therefore propose an incorporation of PRS into the DSM and ICD classifications. However, an adaptation of the current diagnostic criteria is needed. We also consider PRS closely related to regression, which is why we introduce a new concept: “the refusal–withdrawal–regression spectrum”.
Footnotes
1
To ensure anonymity, we selected a fictitious name for the index patient.
 
Literature
1.
go back to reference American Psychiatric Association (2000) Diagnostic and statistical manual of mental disorders. DSM-IV-TR. American Psychiatric Association, Washington, DC American Psychiatric Association (2000) Diagnostic and statistical manual of mental disorders. DSM-IV-TR. American Psychiatric Association, Washington, DC
2.
go back to reference Anonymous (2001) Pervasive refusal syndrome: a parent’s perspective. Clin Child Psychol Psychiatry 6:455–469 Anonymous (2001) Pervasive refusal syndrome: a parent’s perspective. Clin Child Psychol Psychiatry 6:455–469
3.
go back to reference Bodegard G (2005) Life-threatening loss of function in refugee children: another expression of pervasive refusal syndrome? Clin Child Psychol Psychiatry 10:337–350CrossRef Bodegard G (2005) Life-threatening loss of function in refugee children: another expression of pervasive refusal syndrome? Clin Child Psychol Psychiatry 10:337–350CrossRef
4.
go back to reference Bodegard G (2005) Pervasive loss of function in asylum-seeking children in Sweden. Acta Paediatr 94:1706–1707CrossRefPubMed Bodegard G (2005) Pervasive loss of function in asylum-seeking children in Sweden. Acta Paediatr 94:1706–1707CrossRefPubMed
5.
go back to reference Bryant Waugh R, Lask B (1995) Eating disorders in children. J Child Psychol Psychiatry 36:191–202CrossRefPubMed Bryant Waugh R, Lask B (1995) Eating disorders in children. J Child Psychol Psychiatry 36:191–202CrossRefPubMed
6.
go back to reference Dorland WAN, Anderson DM, Novak PD (2003) Dorland’s illustrated medical dictionary. Saunders, Philadelphia Dorland WAN, Anderson DM, Novak PD (2003) Dorland’s illustrated medical dictionary. Saunders, Philadelphia
7.
go back to reference Edwards H, Done A (2004) Caring for Sophie. A child with pervasive refusal syndrome. Paediatr Nurs 16:39–42PubMed Edwards H, Done A (2004) Caring for Sophie. A child with pervasive refusal syndrome. Paediatr Nurs 16:39–42PubMed
8.
go back to reference Fink M, Carlson GA (1995) ECT and prepubertal children. J Am Acad Child Adolesc Psychiatry 34:1256–1257CrossRefPubMed Fink M, Carlson GA (1995) ECT and prepubertal children. J Am Acad Child Adolesc Psychiatry 34:1256–1257CrossRefPubMed
9.
go back to reference Graham PJ, Foreman DM (1995) An ethical dilemma in child and adolescent psychiatry. Psychiatric Bull 19:84–86CrossRef Graham PJ, Foreman DM (1995) An ethical dilemma in child and adolescent psychiatry. Psychiatric Bull 19:84–86CrossRef
10.
go back to reference Lask B (2000) Eating disorders in childhood and adolescence. Curr Paediatr 10:254–258CrossRef Lask B (2000) Eating disorders in childhood and adolescence. Curr Paediatr 10:254–258CrossRef
11.
12.
go back to reference Lask B (1996) Pervasive refusal syndrome. ACPP Occas Pap 12:33–35 Lask B (1996) Pervasive refusal syndrome. ACPP Occas Pap 12:33–35
13.
go back to reference Lask B, Britten C, Kroll L, Magagna J, Tranter M (1991) Children with pervasive refusal. Arch Dis Child 66:866–869CrossRefPubMed Lask B, Britten C, Kroll L, Magagna J, Tranter M (1991) Children with pervasive refusal. Arch Dis Child 66:866–869CrossRefPubMed
14.
go back to reference Lask B, Bryant Waugh R (1997) Prepubertal eating disorders. In: Garner DM, Garfinkel PE (eds) Handbook of treatment for eating disorders. The Guilford Press, New York, pp 476–483 Lask B, Bryant Waugh R (1997) Prepubertal eating disorders. In: Garner DM, Garfinkel PE (eds) Handbook of treatment for eating disorders. The Guilford Press, New York, pp 476–483
15.
go back to reference Lewis M (2002) Child and adolescent psychiatry: a comprehensive textbook. Lippincott Williams & Wilkins, Philadelphia Lewis M (2002) Child and adolescent psychiatry: a comprehensive textbook. Lippincott Williams & Wilkins, Philadelphia
16.
go back to reference Magagna J (2004) ‘I didn’t want to die, but I had to’: The pervasive refusal syndrome. In: Williams G, Williams P, Desmarais J, Ravenscroft K (eds) Exploring eating disorders in adolescents: the generosity of acceptance. Karnac Books, London, pp 107–138 Magagna J (2004) ‘I didn’t want to die, but I had to’: The pervasive refusal syndrome. In: Williams G, Williams P, Desmarais J, Ravenscroft K (eds) Exploring eating disorders in adolescents: the generosity of acceptance. Karnac Books, London, pp 107–138
17.
go back to reference McGowan R, Green J (1998) Pervasive refusal syndrome: a less severe variant with defined aetiology. Clin Child Psychol Psychiatry 3:583–590CrossRef McGowan R, Green J (1998) Pervasive refusal syndrome: a less severe variant with defined aetiology. Clin Child Psychol Psychiatry 3:583–590CrossRef
18.
go back to reference Nunn KP, Thompson SL (1996) The pervasive refusal syndrome: learned helplessness and hopelessness. Clin Child Psychol Psychiatry 1:121–132CrossRef Nunn KP, Thompson SL (1996) The pervasive refusal syndrome: learned helplessness and hopelessness. Clin Child Psychol Psychiatry 1:121–132CrossRef
19.
go back to reference Nunn KP, Thompson SL, Moore SG, English M, Burke EA, Byrne N (1998) Managing pervasive refusal syndrome: strategies of hope. Clin Child Psychol Psychiatry 3:229–249CrossRef Nunn KP, Thompson SL, Moore SG, English M, Burke EA, Byrne N (1998) Managing pervasive refusal syndrome: strategies of hope. Clin Child Psychol Psychiatry 3:229–249CrossRef
20.
go back to reference Rutter ML, Taylor EA (2002) Child and adolescent psychiatry. Blackwell Science, Oxford Rutter ML, Taylor EA (2002) Child and adolescent psychiatry. Blackwell Science, Oxford
21.
go back to reference Sadock BJ, Sadock VA, Kaplan HI (2004) Diagnosis and psychiatry: examination of the psychiatric patient. In: Kaplan and Sadock’s comprehensive textbook of psychiatry. Lippincott Williams & Wilkins, Philadelphia, pp 857 Sadock BJ, Sadock VA, Kaplan HI (2004) Diagnosis and psychiatry: examination of the psychiatric patient. In: Kaplan and Sadock’s comprehensive textbook of psychiatry. Lippincott Williams & Wilkins, Philadelphia, pp 857
22.
go back to reference Tate A (2000) Schooling. In: Lask B, Bryant Waugh R (eds) Anorexia nervosa and related eating disorders in childhood and adolescence. Psychology Press, Hove, pp 323–347 Tate A (2000) Schooling. In: Lask B, Bryant Waugh R (eds) Anorexia nervosa and related eating disorders in childhood and adolescence. Psychology Press, Hove, pp 323–347
23.
go back to reference Taylor S, Dossetor DR, Kilham H, Bernard E (2000) The youngest case of pervasive refusal syndrome? Clin Child Psychol Psychiatry 5:23–29CrossRef Taylor S, Dossetor DR, Kilham H, Bernard E (2000) The youngest case of pervasive refusal syndrome? Clin Child Psychol Psychiatry 5:23–29CrossRef
24.
go back to reference Thompson SL, Nunn KP (1997) The pervasive refusal syndrome: the RAHC experience. Clin Child Psychol Psychiatry 2:145–165CrossRef Thompson SL, Nunn KP (1997) The pervasive refusal syndrome: the RAHC experience. Clin Child Psychol Psychiatry 2:145–165CrossRef
25.
go back to reference van der Stege G (2006) Totaal ontoegankelijk: pervasive refusal syndrome. Kind en Adolescent Praktijk 5:154–159 van der Stege G (2006) Totaal ontoegankelijk: pervasive refusal syndrome. Kind en Adolescent Praktijk 5:154–159
26.
go back to reference van der Walt M, Baron A (2006) The role of music therapy in the treatment of a girl with pervasive refusal syndrome: exploring approaches to empowerment. Aust J Music Ther 17:35–53 van der Walt M, Baron A (2006) The role of music therapy in the treatment of a girl with pervasive refusal syndrome: exploring approaches to empowerment. Aust J Music Ther 17:35–53
27.
go back to reference Von Folsach LL, Montgomery E (2006) Pervasive refusal syndrome among asylum-seeking children. Clin Child Psychol Psychiatry 11:457–473CrossRef Von Folsach LL, Montgomery E (2006) Pervasive refusal syndrome among asylum-seeking children. Clin Child Psychol Psychiatry 11:457–473CrossRef
28.
go back to reference Waite M, Hawker S, Soanes C (2001) Oxford Dictionary. Thesaurus and Wordpower Guide. Oxford University Press, USA Waite M, Hawker S, Soanes C (2001) Oxford Dictionary. Thesaurus and Wordpower Guide. Oxford University Press, USA
29.
go back to reference World Health Organisation (2004) ICD-10: international statistical classification of diseases and related health problems: tenth revision. World Health Organization, Geneva World Health Organisation (2004) ICD-10: international statistical classification of diseases and related health problems: tenth revision. World Health Organization, Geneva
Metadata
Title
Pervasive refusal syndrome as part of the refusal–withdrawal–regression spectrum: critical review of the literature illustrated by a case report
Authors
Tine Jaspers
G. M. J. Hanssen
Judith A. van der Valk
Johann H. Hanekom
Gijs Th. J. van Well
Jan N. M. Schieveld
Publication date
01-11-2009
Publisher
D. Steinkopff-Verlag
Published in
European Child & Adolescent Psychiatry / Issue 11/2009
Print ISSN: 1018-8827
Electronic ISSN: 1435-165X
DOI
https://doi.org/10.1007/s00787-009-0027-6

Other articles of this Issue 11/2009

European Child & Adolescent Psychiatry 11/2009 Go to the issue

Original Contribution

Anxiety in children with CFS/ME