Rees Matthew, Spraker-Perlman Holly, Moore Raechyl, Lavoie Paul, Schiff Linda, Allen Jennifer M, Rai Parul, Anghelescu Doralina L
Department of Oncology St Jude Children's Research Hospital Memphis Tennessee USA.
Department of Hematology St. Jude Children's Research Hospital Memphis Tennessee USA.
EJHaem. 2023 Dec 1;5(1):11-20. doi: 10.1002/jha2.829. eCollection 2024 Feb.
Pain is the hallmark symptom causing morbidity for people with sickle cell disease (SCD) and may present as nociceptive, neuropathic, or mixed type pain. Neuropathic pain (NP) is underrecognized and undertreated in patients with SCD and is associated with decreased patient-reported quality of life. Surveys were completed by clinicians caring for adolescents with SCD in the outpatient setting. SCD patients ages 1418 at increased risk of NP completed a patient-facing survey at a scheduled clinic visit. Ninety-four percent of responding clinicians agreed that NP significantly contributes to reported pain in SCD. Clinicians believed that NP medications are effective for reducing chronic pain (62%) and decreasing opioid utilization (44%). Clinician-identified barriers to prescribing NP medications included concerns about medication adherence (82%), lack of pediatric guidelines for NP medications (70%), and perceived patient concern about side effects (65%). More than 1/3 (35%) of clinicians reported that they were not comfortable managing NP medications. Clinician-identified barriers to referral to a pain management specialist included scheduling concerns (88%) and perceived patient/family lack of interest (77%). Most patients expressed willingness to take a medication for NP (78%), see a pain management specialist (84%), or learn more about nonpharmacologic interventions (72%), although most (51%) also reported some concerns about taking a medication for NP, citing insufficient knowledge (34%), and potential for side effects (32%). A minority of respondents (15%) worried about referral to a pain management specialist. Clinician and patient perspectives provide insights that may guide education efforts or other interventions to improve treatment of SCD-related NP.
疼痛是镰状细胞病（SCD）患者发病的标志性症状，可能表现为伤害感受性疼痛、神经性疼痛或混合性疼痛。SCD患者的神经性疼痛（NP）未得到充分认识和治疗，且与患者报告的生活质量下降有关。门诊环境中照顾SCD青少年患者的临床医生完成了相关调查。14至18岁NP风险增加的SCD患者在预定的门诊就诊时完成了面向患者的调查。94%的受访临床医生同意NP是SCD患者报告疼痛的重要原因。临床医生认为NP药物对减轻慢性疼痛（62%）和减少阿片类药物使用（44%）有效。临床医生确定的开具NP药物的障碍包括对药物依从性的担忧（82%）、缺乏NP药物的儿科指南（7）和患者对副作用的担忧（65%）。超过1/3（35%）的临床医生报告说他们对管理NP药物不太放心。临床医生确定的转诊至疼痛管理专家的障碍包括对预约安排的担忧（88%）和认为患者/家属缺乏兴趣（77%）。大多数患者表示愿意服用NP药物（78%）、看疼痛管理专家（84%）或了解更多非药物干预措施（72%），尽管大多数（51%）也报告了对服用NP药物的一些担忧，理由是知识不足（34%）和可能出现副作用（32%）。少数受访者（15%）担心转诊至疼痛管理专家。临床医生和患者的观点提供了一些见解，可能会指导教育工作或其他干预措施，以改善SCD相关NP的治疗。
