Byiers B J, Merbler A M, Raiter A, Burkitt C C, Symons F J
Department of Educational Psychology, University of Minnesota, Minneapolis, Minnesota, USA.
Gillette Children's, St. Paul, Minnesota, USA.
Can J Pain. 2023 Jul 28;7(1):2229400. doi: 10.1080/24740527.2023.2229400. eCollection 2023.
Although delayed or decreased responses to pain are commonly reported among caregivers of individuals with Rett syndrome (RTT), previous studies in relatively small samples have documented that caregivers are concerned about pain, particularly due to gastrointestinal and musculoskeletal conditions.
The purpose of the current study was to investigate in detail caregivers' perceptions of pain sensitivity, as well as the types, severity, and effect of pain experienced by individuals with RTT in a larger sample than previous studies.
A total of 51 caregivers (mostly mothers) participated in the study, which involved standardized questionnaires and interviews. The individuals with RTT ranged in age from 2 to 52 years of age, and most ( = 46; 90%) met criteria for classic RTT.
Across the sample, 84% of caregivers reported that they believed that their child was less sensitive to pain compared to her typically developing peers. Despite this perception, 63% of caregivers reported that their child had experienced at least one form of pain in the previous 7 days, and 57% reported their child experienced at least one form of chronic pain. On average, caregivers reported that their child's pain was of moderate severity and interfered with at least one activity of daily living.
The results suggest that pain is a substantial concern among caregivers of individuals with RTT and indicate that additional research is needed to understand the apparent paradox of frequently reported pain experiences despite widespread perceptions of decreased pain sensitivity.
尽管据报告，雷特综合征（RTT）患者的照料者对疼痛的反应通常会延迟或减弱，但以往针对相对小样本的研究已证明，照料者会担心疼痛问题，尤其是因胃肠道和肌肉骨骼疾病引起的疼痛。
本研究的目的是在比以往研究更大的样本中，详细调查照料者对疼痛敏感性的看法，以及RTT患者经历的疼痛类型、严重程度和影响。
共有51名照料者（大多数为母亲）参与了该研究，研究包括标准化问卷和访谈。RTT患者的年龄在2岁至52岁之间，大多数（n = 46；90%）符合典型RTT的标准。
在整个样本中，84%的照料者报告称，他们认为自己的孩子与发育正常的同龄人相比对疼痛不太敏感。尽管有这种看法，但63%的照料者报告称，他们的孩子在过去7天内至少经历过一种形式的疼痛，57%的照料者报告称他们的孩子经历过至少一种形式的慢性疼痛。照料者平均报告称，他们孩子的疼痛为中度严重程度，并至少干扰了一项日常生活活动。
结果表明，疼痛是RTT患者照料者的一个重大担忧，并表明需要进行更多研究，以理解尽管普遍认为疼痛敏感性降低，但仍频繁报告疼痛经历这一明显的矛盾现象。
