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Psychosocial Functioning in Parents of MPS III Patients

Thirsa Conijn1, Stephanie C M Nijmeijer1, Hedy A van Oers2

  • 1Department of Pediatric Metabolic Diseases, Emma Children's Hospital and Lysosome Center 'Sphinx', Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.

JIMD Reports
|July 8, 2018
PubMed

Insights

Parenting a child with Mucopolysaccharidosis type III (MPS III or Sanfilippo syndrome) significantly impacts parents, leading to high rates of anxiety, depression, and distress. Post-traumatic stress disorder (PTSD) is also notably prevalent in these parents.

Area of Science:

  • Medical Genetics
  • Neuroscience
  • Psychology

Background:

  • Mucopolysaccharidosis type III (MPS III), also known as Sanfilippo syndrome, is a rare lysosomal storage disease.
  • MPS III causes progressive neurocognitive decline in children, leading to early mortality.
  • The diagnosis of MPS III can significantly affect parents, potentially causing psychosocial issues.

Purpose of the Study:

  • To investigate the psychosocial impact of parenting children with MPS III.
  • To assess levels of anxiety, depression, distress, and post-traumatic stress in parents of MPS III patients.

Main Methods:

  • Twenty-six mothers and 19 fathers of 34 Dutch MPS III patients participated.
  • Validated questionnaires were used: Hospital Anxiety and Depression Scale (HADS), Distress Thermometer for Parents (DT-P), and Self-Rating Scale for Posttraumatic Stress Disorders (SRS-PTSD).
  • Statistical analyses (t-tests, chi-square tests) compared parent data to reference groups.

Main Results:

  • Mothers showed higher rates of clinically relevant anxiety (50%) and depression (34.6%) than reference groups.
  • Fathers also exhibited higher rates of clinically relevant depression (36.8%) compared to reference fathers.
  • High prevalence of distress was observed in mothers (84.6%) and fathers (68.4%).
  • PTSD prevalence was significantly higher in mothers (26.9%) and fathers (15%) compared to the general Dutch population.

Conclusions:

  • Parenting an MPS III patient has a substantial negative impact on parental psychosocial functioning.
  • High levels of anxiety, depression, distress, and PTSD are evident in parents of children with MPS III.
  • Regular monitoring of parental psychosocial well-being is crucial for affected families.
Abstract

Keywords:
AnxietyDepressionMPS IIIParental distressPosttraumatic stress symptomsPsychosocial functioning

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