Department of Psychology, University of Calgary and Alberta Children's Hospital Research Institute, Calgary, Alberta, Canada.
Department of Psychology and Centre for Pain Research, University of Bath, United Kingdom.
J Pain. 2019 Sep;20(9):1080-1090. doi: 10.1016/j.jpain.2019.03.004. Epub 2019 Mar 21.
Diagnostic uncertainty-the perception of a lack of or incorrect label to explain symptoms-has been reported by parents of youth with chronic pain. This study was the first to examine diagnostic uncertainty in both youth with chronic pain and their parents using a qualitative methodology. Individual, face-to-face, semistructured interviews were conducted with 20 youth with chronic pain recruited from a pediatric chronic pain program. Independent interviews were also conducted with one of their parents. Interviews explored participants' memories and perceptions around diagnosis. An in-depth thematic analysis revealed 4 themes: (1) The function of a diagnosis-Parents and youth struggled with the meaning of the diagnosis, needed further explanation for the pain, and perceived the 'right' diagnosis (ie, one that fit with their beliefs) as justification for the pain. (2) Haunted by something missing-Negative test results did not provide relief or counter the belief that something serious could have been missed by clinicians. (3) The search for an alternative diagnosis-A search persisted for the 'right' diagnosis, particularly when a nonpharmacological treatment plan was provided. (4) Mistrust in the medical system-Clinician communication and perceptions of clinicians' uncertainty impacted parent and youth 'buy in' to the diagnosis. Findings suggest that many youth with chronic pain and their parents experience diagnostic uncertainty, which is integrally tied to their past experiences with the medical system. A greater understanding of diagnostic uncertainty may help tailor how clinicians deliver diagnoses to achieve buy in, increase understanding of pain and diagnosis, and improve treatment response. PERSPECTIVE: A major challenge that youth with chronic pain and their parents face is understanding the cause of the pain. Youth with chronic pain and their parents experience uncertainty about their diagnosis, which may be linked to their buy in and treatment response.
诊断不确定性——即父母认为无法或无法正确确定症状的病因——在患有慢性疼痛的青少年的父母中也有报道。本研究首次使用定性方法来检验患有慢性疼痛的青少年及其父母的诊断不确定性。从儿科慢性疼痛项目中招募了 20 名患有慢性疼痛的青少年，对他们进行了个体、面对面、半结构化访谈。还对他们的一位父母进行了独立访谈。访谈探讨了参与者对诊断的记忆和看法。深入的主题分析揭示了 4 个主题：（1）诊断的作用——父母和青少年对诊断的意义感到困惑，需要进一步解释疼痛的原因，并且认为（即符合他们信念的）“正确”诊断是疼痛的正当理由。（2）被缺失的东西所困扰——阴性的检查结果并不能减轻痛苦，也不能消除医生可能遗漏了严重问题的信念。（3）寻找替代诊断——特别是当提供非药物治疗计划时，他们仍在寻找“正确”的诊断。（4）对医疗系统的不信任——临床医生的沟通和对临床医生不确定性的看法会影响父母和青少年对诊断的认同。研究结果表明，许多患有慢性疼痛的青少年及其父母都经历过诊断不确定性，这与他们过去与医疗系统的经历密切相关。更好地了解诊断不确定性可能有助于调整临床医生提供诊断的方式，以实现认同，增加对疼痛和诊断的理解，并改善治疗反应。观点：患有慢性疼痛的青少年及其父母面临的一个主要挑战是了解疼痛的原因。患有慢性疼痛的青少年及其父母对他们的诊断感到不确定，这可能与其认同和治疗反应有关。
