Replication Data for: Adolescents’ perspectives on non-pharmacological pain interventions for sickle cell crisis management: a population-based survey

Background & Aims: Nigeria has the highest sickle cell disease (SCD) prevalence globally. Research indicates that adolescents often utilize non-pharmacological interventions (NPIs) to cope with recurrent painful sickle cell crises (SCC) while navigating the complex biopsychosocial challenges of adolescence. This study explored the use and perceived value of NPIs for managing SCC pain from the perspectives of Nigerian adolescents, including their preferred media for NPI educational resources.

Methods: A population-based survey targeted adolescents aged 12 to 18 living with SCD in Nigeria. Adolescents were recruited using convenience and snowballing sampling through SCD support groups and were asked to complete a 27-item questionnaire delivered online or on paper. Data were descriptively analysed.

Results: Out of 138 surveys returned, 123 surveys were included in the final analysis. Among the participants, 51% were males with a mean age of 14.85 (SD±2.11). Most participants (77%) had used at least one NPI to manage pain during SCC, and 31 different NPIs were reported. The most used NPIs were massage (53%), herbal products (37%) and prayer (30%). Participants described various factors that impacted their use of NPI, including healthcare providers’ disapproval. The most common NPIs that the adolescents plan to use in the future were: herbal products (45%), massage (33%) and prayer (30%). Lastly, respondents preferred to receive NPI education via videos (34%) and animations (20%).

Conclusions: The study showed that Nigerian adolescents use various NPIs to manage their pain during SCC, including traditional remedies and physical and spiritual interventions. Most participants already used (or planned to use) herbal products and other NPIs with limited scientific evidence of their safety or effectiveness on SCD outcomes. This warrants the attention of clinicians and researchers as there is an urgent need to further explore the specific NPIs used and their effectiveness on SCD outcomes and safety.

背景与研究目的：尼日利亚是全球镰状细胞病（sickle cell disease, SCD）患病率最高的国家。已有研究显示，青少年在应对青春期复杂的生物心理社会挑战的过程中，常借助非药物干预措施（non-pharmacological interventions, NPIs）缓解复发性疼痛性镰状细胞危象（recurrent painful sickle cell crises, SCC）带来的痛苦。本研究从尼日利亚镰状细胞病青少年的视角出发，探讨其用于管理镰状细胞危象疼痛的非药物干预措施的使用现状与感知价值，包括受试者偏好的非药物干预教育资源传播媒介。

研究方法：本研究采用基于人群的调查设计，研究对象为尼日利亚境内12至18岁的镰状细胞病青少年。研究人员通过镰状细胞病支持团体，采用方便抽样与滚雪球抽样的方式招募受试者，要求其填写一份包含27个条目、可通过线上或纸质形式完成的调查问卷。数据采用描述性统计方法进行分析。

研究结果：本次研究共回收138份问卷，最终纳入123份用于最终分析。受试者中51%为男性，平均年龄为14.85岁（标准差±2.11）。多数受试者（77%）曾至少使用过一种非药物干预措施来缓解镰状细胞危象期间的疼痛，研究共记录到31种不同的非药物干预措施。使用频率最高的三类干预措施依次为按摩（53%）、草本制品（37%）与祈祷（30%）。受试者提及了多种影响其使用非药物干预措施的因素，其中包括医疗保健人员的不认可。青少年未来计划使用的非药物干预措施中，排名前三的分别为草本制品（45%）、按摩（33%）与祈祷（30%）。最后，受访者偏好通过视频（34%）与动画（20%）的形式获取非药物干预教育内容。

研究结论：本研究表明，尼日利亚青少年会采用多种非药物干预措施缓解镰状细胞危象期间的疼痛，涵盖传统疗法、物理干预与精神干预手段。大多数受试者已使用（或计划使用）草本制品及其他非药物干预措施，但此类措施针对镰状细胞病转归的安全性与有效性尚未获得充分的科学证据支持。临床医师与研究人员亟需关注该领域，进一步探索受试者所使用的具体非药物干预措施，以及其对镰状细胞病转归的影响与安全性。