Pediatric Metabolic Diseases, Emma Children's Hospital and Amsterdam Lysosome Centre "Sphinx", Amsterdam UMC, University of Amsterdam, H8-264, Meibergdreef 9, Amsterdam, The Netherlands.
Psychosocial Department, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.
Orphanet J Rare Dis. 2021 Mar 10;16(1):126. doi: 10.1186/s13023-021-01768-7.
Parents of children with severe inborn errors of metabolism frequently face stressful events related to the disease of their child and are consequently at high risk for developing parental posttraumatic stress disorder (PTSD). Assessment and subsequent treatment of PTSD in these parents is however not common in clinical practice. PTSD can be effectively treated by Eye Movement Desensitization and Reprocessing (EMDR), however no studies have been conducted yet regarding the effect of EMDR for parental PTSD. EMDR is generally offered in multiple weekly sessions which may preclude participation of parents as they are generally overburdened by the ongoing and often intensive care for their child. Therefore, we offered time-limited EMDR with a maximum of four sessions over two subsequent days to two parents of mucopolysaccharidosis type III (MPS III) patients to explore its potential effects. Both qualitative and quantitative outcomes were used to evaluate treatment effects. Both parents felt more resilient and competent to face future difficulties related to the disease of their child, and no adverse effects were reported. Quantitative outcomes showed a clinically significant decrease in post traumatic stress symptoms and comorbid psychological distress from pre- to post treatment, and these beneficial effects were maintained at follow-up. In conclusion, time-limited EMDR may be a highly relevant treatment for traumatized parents of children with MPS III, and probably also for parents of children with other rare progressive disorders. Further research is needed to validate the efficacy of EMDR in this specific population.
患有严重先天性代谢错误的儿童的父母经常面临与孩子疾病相关的压力事件，因此他们患父母创伤后应激障碍（PTSD）的风险很高。然而，在临床实践中，对这些父母的 PTSD 进行评估和后续治疗并不常见。眼动脱敏再处理（EMDR）可以有效地治疗 PTSD，但目前尚未对 EMDR 治疗父母 PTSD 的效果进行研究。EMDR 通常在多个每周的疗程中提供，这可能会阻止父母参与，因为他们通常因孩子持续且通常密集的护理而负担过重。因此，我们为两名粘多糖贮积症 III 型（MPS III）患者的父母提供了为期两天最多四个疗程的限时 EMDR，以探索其潜在效果。使用定性和定量结果来评估治疗效果。两位父母都感到更有弹性和能力面对与孩子疾病相关的未来困难，并且没有报告不良反应。定量结果显示，创伤后应激症状和并发心理困扰从治疗前到治疗后均有临床显著下降，这些有益效果在随访时得到维持。总之，限时 EMDR 可能是 MPS III 患儿父母创伤后的一种非常相关的治疗方法，对于患有其他罕见进行性疾病的儿童的父母可能也是如此。需要进一步的研究来验证 EMDR 在这一特定人群中的疗效。
