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“Communicating Lily’s Pain”: A reflective narrative commentary about co‐creating a resource to provoke thinking and change about assessing and managing the pain of children with profound cognitive impairment “沟通莉莉的痛苦”:一个反思性的叙事评论,关于共同创造一个资源,以激发对评估和管理患有严重认知障碍的儿童痛苦的思考和改变
Pub Date : 2022-02-07 DOI: 10.1002/pne2.12074
B. Carter, R. Young, James Munro
This paper draws together about 20 years of research work and discovery and the development of a resource about pain assessment and management in children with profound cognitive impairment. The animation tells the story of an imagined child called Lily and the skills her mother uses and the challenges that her mother faces in assessing and managing Lily's pain. The animation is built on stories drawn from qualitative research findings, conversations while in clinical practice and with members of the general public, parent advisers and other sources. Most of the “evidence” came from stories shared by parents and healthcare professionals. This paper draws on some elements of socio‐narratology and is predicated on the basis that stories are important and they can act on and with us. By using an animation to tell Lily's story, the intention was to communicate research findings to a wider and more diverse audience than the typical readership of an academic journal. The intention was to act in and on people's consciousness about children's pain and to strengthen relationships and create bonds between clinicians, parents, and children in pain to make their dialog more social, connected, and meaningful. All three of us—the researcher, the writer, and the animator—have been marked and “re‐shaped” by our work related to creating Lily; we have learned more about children like Lily and their mothers, and we have learned more about ourselves and our humanity. This animation is still a story in progress, a story ‘in the wild’, a story (and a resource) we would like you to re‐tell and share. The story of Lily's pain aimed to change the lives of parents and children and professionals. Our hope is that you can be part of that change.
本文汇集了大约20年的研究工作和发现,并开发了一种关于深度认知障碍儿童疼痛评估和管理的资源。这部动画讲述了一个想象中的孩子莉莉的故事,以及她母亲在评估和管理莉莉的痛苦时使用的技巧和她母亲面临的挑战。该动画的故事取材于定性研究结果、临床实践中的对话以及与公众、家长顾问和其他来源的对话。大多数“证据”来自父母和医疗保健专业人员分享的故事。本文借鉴了社会叙事学的一些元素,并基于故事是重要的,它们可以与我们一起行动。通过用动画来讲述莉莉的故事,目的是将研究成果传达给更广泛、更多样化的受众,而不是学术期刊的典型读者。其目的是根据人们对儿童疼痛的意识采取行动,并加强临床医生、父母和痛苦儿童之间的关系,建立联系,使他们的对话更具社交性、联系性和意义。我们三个人——研究人员、作家和动画师——都被我们创造莉莉的工作所标记和“重新塑造”;我们更多地了解了像莉莉这样的孩子和他们的母亲,我们更多地了解了我们自己和我们的人性。这个动画仍然是一个正在进行的故事,一个“在野外”的故事,一个故事(和资源),我们希望你重新讲述和分享。莉莉痛苦的故事旨在改变父母、孩子和专业人士的生活。我们希望你能成为这一改变的一部分。
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引用次数: 1
The sands of time: Adolescents' temporal perceptions of peer relationships and autonomy in the context of living with chronic pain. 时间之沙:青少年在慢性疼痛生活背景下对同伴关系和自主性的时间感知。
Pub Date : 2022-01-26 eCollection Date: 2022-09-01 DOI: 10.1002/pne2.12071
Abigail Jones, Line Caes, Christopher Eccleston, Melanie Noel, Jeremy Gauntlett-Gilbert, Abbie Jordan

The incidence of chronic and recurrent pain increases in adolescence. Prevalence of adolescent chronic pain is estimated to be 11%-44%, with approximately 5% adolescents experiencing moderate-to-severe chronic pain. Adolescents with chronic pain also report unwanted changes in emotional, social, and developmental functioning. Very little is known about how adolescents with chronic pain make sense of their development, the role of pain in that development, and how such developmental trajectories progress over time. A multi-methods qualitative study was designed to explore how adolescents make sense of their experience of chronic pain in the context of development. Nine adolescents (8 girls) aged 12-22 years old (Mean = 15.7, SD = 2.8) were recruited from a UK national pain service. Adolescents completed an interview on entering the service, and a follow-up interview 12 months later. They also completed monthly diaries in this 12-month period. Data comprised 18 interviews and 60 diary entries, which were analyzed using inductive reflexive thematic analysis. Analyses generated one overarching theme entitled "tug of war: push and pull," demonstrating developmental tension related to pain, and the cumulative impact these had over time. This overarching theme comprised two subthemes which capture these tensions across the developmental domains of peer relationships and autonomy. The first subtheme, "the shifting sands of peer relationships," explores the ever-changing closeness between self and peers. The second subtheme referred to "restricted choices" and how pain limited the participants' autonomy but that this, over time could push development forward. These results extend previous cross-sectional research on the developmental consequences of chronic pain, showing the dynamic fluctuations and alterations to developmental trajectories over time.

慢性疼痛和复发性疼痛的发病率在青少年时期有所增加。据估计,青少年慢性疼痛的发病率为 11%-44%,其中约有 5%的青少年患有中度至重度慢性疼痛。患有慢性疼痛的青少年在情绪、社交和发育功能方面也会出现不必要的变化。人们对患有慢性疼痛的青少年如何认识自己的发展、疼痛在发展中的作用以及这种发展轨迹如何随着时间的推移而发展知之甚少。我们设计了一项采用多种方法的定性研究,旨在探索青少年如何在发展过程中理解他们的慢性疼痛经历。研究从英国国家疼痛服务机构招募了 9 名 12-22 岁的青少年(8 名女孩)(平均值 = 15.7,标准差 = 2.8)。青少年在接受服务时完成了一次访谈,并在 12 个月后完成了一次随访。在这 12 个月期间,他们还填写了月度日记。数据包括 18 次访谈和 60 篇日记,采用归纳式反思主题分析法对这些数据进行了分析。分析产生了一个名为 "拉锯战:推和拉 "的总主题,展示了与疼痛有关的发展张力,以及随着时间推移产生的累积影响。这个总主题包括两个次主题,分别反映了同伴关系和自主性这两个发展领域中的紧张关系。第一个次主题 "同伴关系的风云变幻 "探讨了自我与同伴之间不断变化的亲密关系。第二个次主题提到了 "受限的选择",以及疼痛如何限制了参与者的自主性,但随着时间的推移,这可能会推动发展。这些结果扩展了之前关于慢性疼痛对发展的影响的横断面研究,显示了随着时间的推移,发展轨迹的动态波动和改变。
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引用次数: 0
"I just want to be normal": A qualitative investigation of adolescents' coping goals when dealing with pain related to arthritis and the underlying parent-adolescent personal models. "我只想做个正常人对青少年应对关节炎相关疼痛时的目标以及潜在的父母-青少年个人模式的定性调查。
Pub Date : 2021-12-28 eCollection Date: 2022-09-01 DOI: 10.1002/pne2.12069
Daniela Ghio, Rachel Calam, Rebecca Rachael Lee, Lis Cordingley, Fiona Ulph

The aim of the current study was to examine adolescents' goals when coping with pain and map these goals to the cognitive and emotional profiles of both adolescent and their parent. 17 adolescents (11-16 years) and their parents participated in a cohort study of Juvenile Idiopathic Arthritis (JIA); the adolescents, took part in a two-part interview (about their pain perceptions and about a recent pain experience) and the parents completed an open-ended qualitative survey. The three datasets were analysed following a qualitative framework approach. A coping framework was developed and cognitive and emotional profiles for both adolescent and parent were mapped back to the framework. The overall goal of adolescents was to preserve social identity, by either focusing on maintaining a "normal" lifestyle (sub-coping goal one) or managing the pain (sub-coping goal two). Across these two sub-coping goals, the adolescents held similar cognitive profiles (beliefs about timeline, consequences, control) but different emotional profiles such as feeling fine/happy compared with feeling angry and frustrated. Conversely, the parents' cognitive and emotional profiles were mapped back to the two groups and found that their beliefs were different across the two sub-coping goals but had similar emotional profiles across the two groups such as worry. Both the adolescents' emotional representations and parental cognitive profiles seem to be related to how the adolescent perceives a pain event, deals with the pain, and the overall coping goal of the adolescent. Findings are suggestive that parental pain beliefs influence the adolescents' pain representations and their coping goals but are also driven by adolescents' emotions. Further work on these potential pathways is needed. Family interventions should be designed, targeting coping goals taking into consideration the importance of emotions for adolescents and parental pain beliefs.

本研究旨在探讨青少年在应对疼痛时的目标,并将这些目标与青少年及其父母的认知和情感特征相联系。17名青少年(11-16岁)及其父母参加了一项关于青少年特发性关节炎(JIA)的队列研究;青少年参加了由两部分组成的访谈(关于他们对疼痛的看法和最近的一次疼痛经历),父母则完成了一项开放式定性调查。我们采用定性框架方法对这三个数据集进行了分析。我们制定了一个应对框架,并将青少年和家长的认知和情感特征与该框架进行了映射。青少年的总体目标是保持社会认同,具体做法是专注于维持 "正常 "的生活方式(子应对目标一)或控制疼痛(子应对目标二)。在这两个子应对目标中,青少年持有相似的认知特征(关于时间轴、后果、控制的信念),但情感特征却不同,如感觉良好/快乐与感觉愤怒和沮丧。相反,将父母的认知和情感特征与两组青少年进行对比后发现,他们对两个次应对目标的信念不同,但两组青少年的情感特征相似,如担心。青少年的情绪表征和父母的认知特征似乎都与青少年如何感知疼痛事件、如何处理疼痛以及青少年的总体应对目标有关。研究结果表明,父母的疼痛信念会影响青少年的疼痛表征及其应对目标,但同时也受青少年情绪的驱动。我们需要进一步研究这些潜在的途径。在设计家庭干预措施时,应考虑到情绪对青少年和父母疼痛信念的重要性,以应对目标为目标。
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引用次数: 0
Efficacy of topical lidocaine-prilocaine (EMLA®) for management of infant pain during pneumococcal vaccination: A randomized controlled trial. 局部使用利多卡因-四氢卡因 (EMLA®) 缓解婴儿接种肺炎球菌疫苗期间疼痛的疗效:随机对照试验。
Pub Date : 2021-12-24 eCollection Date: 2022-06-01 DOI: 10.1002/pne2.12070
Beatrice Olsson Duse, Ylva Sporrong, Marco Bartocci, Karin Skoglund

Few studies have evaluated whether topical anesthetic cream reduces pain during pneumococcal vaccination. This is crucial, since effective pain management should be evidence-based. Previous studies have shown that topical lidocaine-prilocaine (EMLA®) reduces vaccination-related pain, measured using pain-rating instruments and observation of crying time. This intervention study aimed to compare the efficacy of topical lidocaine-prilocaine cream with that of the standard of care on the expression of pain during the first pneumococcal vaccination administered at age 3 months under the Swedish national vaccination program. A randomized controlled trial included 72 infants receiving their first pneumococcal vaccination (Prevenar 13®). The study showed that topical lidocaine-prilocaine before pneumococcal vaccination significantly reduced infants' expression of pain according to the Face, Legs, Activity, Cry, Consolability (FLACC) score (P = .006) and increased latency to cry (P = .001). There were no statistically significant differences in the total crying time (P = .146) between the groups. Topical lidocaine-prilocaine cream reduced pain expression and increased latency to cry in infants receiving their first pneumococcal vaccine. Systematic efforts are needed to successfully implement the use of topical anesthetic cream and other effective non-pharmacological pain-relieving strategies during infant vaccination procedures.

很少有研究对局部麻醉膏是否能减轻肺炎球菌疫苗接种过程中的疼痛进行评估。这一点至关重要,因为有效的疼痛管理应该以证据为基础。以往的研究表明,局部使用利多卡因-四氢卡因 (EMLA®) 可以减轻接种疫苗时的疼痛,疼痛评分工具和哭泣时间观察均可测量疼痛程度。这项干预研究旨在比较局部使用利多卡因-四氢卡因乳膏与标准护理对 3 个月大婴儿在瑞典国家疫苗接种计划下首次接种肺炎球菌疫苗时的疼痛表现的疗效。一项随机对照试验纳入了 72 名首次接种肺炎球菌疫苗(Prevenar 13®)的婴儿。研究显示,根据脸部、腿部、活动、哭泣、安慰性(FLACC)评分,接种肺炎球菌疫苗前局部使用利多卡因-四氯乙酸可显著减少婴儿的疼痛表达(P = .006),并增加哭泣的潜伏期(P = .001)。两组患者的总哭泣时间差异无统计学意义(P = .146)。外用利多卡因-阿普鲁卡因乳膏可减少首次接种肺炎球菌疫苗的婴儿的疼痛表现,并延长哭泣的潜伏期。在婴儿疫苗接种过程中成功使用局部麻醉膏和其他有效的非药物止痛策略需要系统的努力。
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引用次数: 0
Presence and predictors of pain after orthopedic surgery and associated orthopedic outcomes in children with cerebral palsy 脑瘫患儿骨科手术后疼痛的存在和预测因素及相关骨科预后
Pub Date : 2021-12-18 DOI: 10.1002/pne2.12067
E. Boyer, Zac Novaczyk, T. Novacheck, F. Symons, C. Burkitt
While children with cerebral palsy (CP) may undergo 8‐22 orthopedic surgeries in their lifetime, little is known about the associated pain. We aimed to assess the pain presence before and one year after lower extremity orthopedic surgery, predictors of pain presence at follow‐up, and the association between pain and orthopedic outcomes related to surgery. This retrospective study included 86 children with CP (M age = 10.0 years, SD = 3.2; range = 4.1‐17.3 years, Gross Motor Functional Classification System (GMFCS) level I‐III) who underwent orthopedic surgery and had completed questionnaires at gait analyses before (M = 2.7 months; range = 0.0‐5.7) and after surgery (M = 11.8 months; range = 9.0‐14.9). Pain presence, location, and Pediatric Outcomes Data Collection Instrument (PODCI) scores were documented before and after surgery at gait analyses. Pain prevalence was 60% at baseline and 56% at follow‐up. Significant predictors of pain presence at follow‐up included (1) pain presence at baseline (range of odds ratios [OR] across any/all locations = 3.22 to 15.54), (2) older age (range of OR for any pain, back, knee, and foot pain = 1.24‐1.26), (3) female sex (decreased OR for males for ankle pain = 0.12), (4) having hip surgery (decreased OR for foot pain = 0.20), and (5) lower GMFCS level (OR for foot pain = 0.41). Changes in PODCI Sports and Physical Function scores were associated with changes in hip and knee pain (P < .03); PODCI scores worsened for patients who had pain at both time points and improved for patients who had pain at baseline but not follow‐up. Pain was present for over half of the participants before and after orthopedic surgery. Pain presence at follow‐up was predicted by pain presence at baseline. Pain and functional outcomes were correlated at follow‐up. Prospective studies examining perioperative pain experience and factors predicting pain outcomes are warranted.
脑瘫(CP)患儿一生中可能接受8 ~ 22次骨科手术,但对相关疼痛知之甚少。我们的目的是评估下肢骨科手术前和手术后一年的疼痛情况,随访时疼痛的预测因素,以及手术后疼痛与骨科预后之间的关系。本回顾性研究纳入86例CP患儿(M年龄= 10.0岁,SD = 3.2;范围= 4.1 - 17.3岁,大肌肉运动功能分类系统(GMFCS)等级为I - III级),接受骨科手术并在步态分析之前完成问卷调查(M = 2.7个月;范围= 0.0‐5.7)和术后(M = 11.8个月;范围= 9.0‐14.9)。在步态分析中记录手术前后疼痛的存在、位置和儿科结局数据收集工具(PODCI)评分。基线时疼痛发生率为60%,随访时为56%。随访时疼痛存在的重要预测因素包括:(1)基线疼痛存在(任何/所有部位的比值比[OR]范围= 3.22至15.54),(2)年龄较大(任何疼痛、背部、膝盖和足部疼痛的比值比范围= 1.24‐1.26),(3)女性(男性踝关节疼痛的比值比降低= 0.12),(4)髋关节手术(足部疼痛的比值比降低= 0.20),(5)GMFCS水平较低(足部疼痛的比值比降低= 0.41)。PODCI运动和身体功能评分的变化与髋关节和膝关节疼痛的变化相关(P < .03);在两个时间点均有疼痛的患者的PODCI评分均恶化,而基线时均有疼痛但未随访的患者的PODCI评分则改善。超过一半的参与者在整形手术前后都有疼痛。随访时的疼痛存在通过基线时的疼痛存在来预测。在随访中,疼痛和功能结果相关。对围手术期疼痛经历和预测疼痛结果的因素进行前瞻性研究是必要的。
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引用次数: 2
Comprehensive pain management strategy for infants with moderate to severe osteogenesis imperfecta in the perinatal period 围产期中重度成骨不全婴儿的综合疼痛管理策略
Pub Date : 2021-12-01 DOI: 10.1002/pne2.12066
Ricki S. Carroll, Perri Donenfeld, C. McGreal, J. Franzone, R. Kruse, Catherine Preedy, Joanna Costa, D. Dirnberger, M. Bober
Osteogenesis imperfecta (OI) is a rare genetic heterogeneous disorder that causes increased bone fragility and recurrent fractures. For infants with OI and diffuse fractures, pain management, which is nuanced and specific for this population, is of the utmost importance to their neonatal care. Through experience at our center, we have developed a standard approach that has been successful in optimizing survival for these infants during this tenuous period. In this paper, we outline our multidisciplinary approach to pain management for infants with moderate to severe OI during the neonatal period, with emphasis on promotion of fracture healing and adequate pain control.
成骨不全症(OI)是一种罕见的遗传异质性疾病,可导致骨易碎性增加和复发性骨折。对于患有成骨不全和弥漫性骨折的婴儿来说,疼痛管理对于他们的新生儿护理至关重要。通过我们中心的经验,我们开发了一种标准的方法,成功地优化了这些婴儿在这一脆弱时期的存活率。在本文中,我们概述了我们在新生儿期中度至重度成骨不全婴儿疼痛管理的多学科方法,重点是促进骨折愈合和适当的疼痛控制。
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引用次数: 1
Assessment of perceived distress due to nasopharyngeal swab collection in healthy Indian infants participating in a clinical trial 评估参与临床试验的印度健康婴儿鼻咽拭子收集引起的感知窘迫
Pub Date : 2021-12-01 DOI: 10.1002/pne2.12068
A. Kawade, G. Dayma, Aditi Apte, Sudipto Roy, Arun Gondhali, S. Juvekar, A. Bavdekar
Routinely children are exposed to various procedures as a part of clinical care and/or research participation. Public health strategies to contain current COVID‐19 pandemic demanded massive nasopharyngeal swab testing but limited data exist to confirm the extent of the pain and distress that result from this procedure. These data could help clinicians to formulate mitigation strategies, influence public health directives, and inform review boards/ethics committees to decide on risk‐benefit ratio of the procedure. Hence, an observational study to assess perceived distress was nested in a phase IV alternate and reduced dose schedule trial of the pneumococcal conjugate vaccine (PCV) in which nasopharyngeal swab (NPS) was used to collect nasopharyngeal secretions as part of the study procedure. Out of 805 infant participants enrolled in the main study, a total of 425 infants were enrolled and observed for procedural distress at 18 weeks and 10 months of age using the Face Leg Activity Cry and Consolability (FLACC) Scale. The FLACC score and duration of cry were recorded. The mean FLACC score changed substantially from preprocedural to procedure in both age groups (from 0.08 to 5.8 at 18 weeks and from 0.5 to 7.007 at 10 months. P = <.0001). The proportion of infants experiencing higher FLACC scores (7‐10) indicating severe distress increased significantly from 22% (n = 95) at 18 weeks to 61% (n = 248) at 10 months (P < .0001). The mean duration of cry was significantly increased from 23.03 seconds at 18 weeks to 52.6 seconds at 10 months (P = .00). Nasopharyngeal swab collection produced substantial distress which increased with age. Adequate training of sample collectors and supporting parent engagement during procedure could help in reducing the distress.
作为临床护理和/或研究参与的一部分,儿童通常会接触到各种程序。遏制当前COVID - 19大流行的公共卫生战略要求进行大规模的鼻咽拭子检测,但现有的数据有限,无法证实这一程序造成的疼痛和痛苦的程度。这些数据可以帮助临床医生制定缓解策略,影响公共卫生指令,并为审查委员会/伦理委员会决定手术的风险-收益比提供信息。因此,在肺炎球菌结合疫苗(PCV)的IV期交替和减少剂量计划试验中,采用鼻咽拭子(NPS)收集鼻咽分泌物作为研究程序的一部分,进行了一项评估感知窘迫的观察性研究。在主要研究的805名婴儿参与者中,共有425名婴儿被纳入研究,并在18周龄和10个月大时使用脸腿活动哭泣和安慰(FLACC)量表观察程序性窘迫。记录FLACC评分和哭闹持续时间。两个年龄组的平均FLACC评分从术前到术中变化很大(18周时从0.08到5.8,10个月时从0.5到7.007)。P = < 0.0001)。FLACC评分(7‐10)较高的婴儿比例表明严重窘迫,从18周时的22% (n = 95)显著增加到10个月时的61% (n = 248) (P < 0.0001)。平均哭声持续时间从18周时的23.03秒显著增加到10个月时的52.6秒(P = 0.00)。鼻咽拭子采集产生了大量的痛苦,这种痛苦随着年龄的增长而增加。对样本收集者进行充分的培训,并支持家长在程序中参与,有助于减少痛苦。
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引用次数: 6
Toward personalized medicine for pharmacological interventions in neonates using vital signs 利用生命体征对新生儿进行药物干预的个性化医学研究
Pub Date : 2021-11-22 DOI: 10.1002/pne2.12065
C. Hartley
Vital signs, such as heart rate and oxygen saturation, are continuously monitored for infants in neonatal care units. Pharmacological interventions can alter an infant's vital signs, either as an intended effect or as a side effect, and consequently could provide an approach to explore the wide variability in pharmacodynamics across infants and could be used to develop models to predict outcome (efficacy or adverse effects) in an individual infant. This will enable doses to be tailored according to the individual, shifting the balance toward efficacy and away from the adverse effects of a drug. Pharmacological analgesics are frequently not given in part due to the risk of adverse effects, yet this exposes infants to the short‐ and long‐term effects of painful procedures. Personalized analgesic dosing will be an important step forward in providing safer effective pain relief in infants. The aim of this paper was to describe a framework to develop predictive models of drug outcome from analysis of vital signs data, focusing on analgesics as a representative example. This framework investigates changes in vital signs in response to the analgesic (prior to the painful procedure) and proposes using machine learning to examine if these changes are predictive of outcome—either efficacy (with pain response measured using a multimodal approach, as changes in vital signs alone have limited sensitivity and specificity) or adverse effects. The framework could be applied to both preterm and term infants in neonatal care units, as well as older children. Sharing vital signs data are proposed as a means to achieve this aim and bring personalized medicine rapidly to the forefront in neonatology.
生命体征,如心率和血氧饱和度,持续监测新生儿护理单位的婴儿。药物干预可以改变婴儿的生命体征,无论是作为预期效果还是作为副作用,因此可以提供一种方法来探索婴儿药效学的广泛变异性,并可用于开发模型来预测个体婴儿的结果(疗效或不良反应)。这将使剂量能够根据个人量身定制,将平衡转向疗效,远离药物的副作用。由于不良反应的风险,通常不给予药理学镇痛药,但这使婴儿暴露于痛苦手术的短期和长期影响。个性化的镇痛药剂量将是向前迈出的重要一步,为婴儿提供更安全有效的疼痛缓解。本文的目的是描述一个框架,从生命体征数据的分析中开发药物结果的预测模型,以镇痛药为代表的例子。该框架研究了对镇痛药反应的生命体征的变化(在疼痛过程之前),并建议使用机器学习来检查这些变化是否可以预测结果——无论是疗效(使用多模式方法测量疼痛反应,因为单独的生命体征变化具有有限的敏感性和特异性)还是不良反应。该框架可适用于新生儿护理单位的早产儿和足月婴儿,以及年龄较大的儿童。共享生命体征数据被提议作为实现这一目标的一种手段,并将个性化医疗迅速推向新生儿学的前沿。
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引用次数: 2
A descriptive study on the treatment of pediatric CRPS in the Nordic countries and Germany 北欧国家和德国儿童CRPS治疗的描述性研究
Pub Date : 2021-11-14 DOI: 10.1002/pne2.12064
Johanna Broman, Cathrin Weigel, L. Hellmundt, A. Persson
Pediatric complex regional pain syndrome (pCRPS) is a rare, painful state that often occurs as a complication following physical trauma. Diagnosis and treatment require specialist expertise in a multidisciplinary setting. Treatment is focused on pain reduction and improvement in function, which differs from the treatment of adult CRPS. We performed a cross‐sectional survey with the aim of identifying pain centers in the Nordic countries and Germany that specialized in treating children with pain, especially pCRPS, and sought to describe their treatment strategies. Centers and health‐care professionals working with children experiencing chronic pain were identified using internet search engines, phones, or e‐mail. A standardized set of questions and an electronic questionnaire were answered by the participants. A total of 28 participants were identified in 24 centers, which were involved with patients having pCRPS (Germany: 7, Norway: 7, Sweden: 5, Finland: 5, Denmark: 3, and Island: 1). One center in Germany treated more than 20 patients per year. Half of the identified centers (n = 12) treated between 1 and 5 children with pCRPS per year. Guidelines for treating pCRPS were reportedly followed by 9/28 responders (32%), and physiotherapy was reported to be part of the treatment routine in most centers (74%). Interventional anesthesia was rarely used. Psychological therapy: 57% answered that it was always offered, 30% replied that it was proffered in most cases, and 13% responded that it was recommended in only a few patients. Pharmacological treatments were not commonly used. Treatment resources for pCRPS are scarce in the Nordic countries and Germany. Most centers treated very few children with pCRPS and did not have established guidelines. A multidisciplinary approach was used by many centers, most often combining physiotherapy and psychotherapy, and less commonly pharmacological treatment. The difficulties in diagnosing pCRPS and finding official referral units are unfortunate, considering the potentially favorable outcome with adequate treatment.
小儿复杂局部疼痛综合征(pCRPS)是一种罕见的疼痛状态,通常发生在身体创伤后的并发症。诊断和治疗需要多学科背景下的专业知识。治疗的重点是减轻疼痛和改善功能,这与成人CRPS的治疗不同。我们进行了一项横断面调查,目的是确定北欧国家和德国专门治疗儿童疼痛的疼痛中心,特别是pCRPS,并试图描述他们的治疗策略。研究人员通过互联网搜索引擎、电话或电子邮件确定了治疗慢性疼痛儿童的中心和卫生保健专业人员。参与者回答了一套标准化的问题和一份电子问卷。共有28名参与者在24个中心被确定,这些中心涉及pCRPS患者(德国:7名,挪威:7名,瑞典:5名,芬兰:5名,丹麦:3名,冰岛:1名)。德国的一个中心每年治疗20多名患者。一半的中心(n = 12)每年治疗1 - 5名pCRPS患儿。据报道,9/28的应答者(32%)遵循了治疗pCRPS的指南,据报道,在大多数中心(74%),物理治疗是治疗常规的一部分。很少使用介入麻醉。心理治疗:57%的人回答总是提供,30%的人回答在大多数情况下提供,13%的人回答只在少数患者中推荐。药物治疗不常用。在北欧国家和德国,pCRPS的治疗资源很少。大多数中心治疗的pCRPS儿童很少,也没有建立指导方针。许多中心采用多学科方法,最常见的是结合物理治疗和心理治疗,不太常见的是药物治疗。考虑到适当治疗的潜在有利结果,诊断pCRPS和寻找官方转诊单位的困难是不幸的。
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引用次数: 0
Promoting readiness and engagement in pain rehabilitation for youth and families: Developing a pediatric telehealth motivational interviewing protocol. 促进青少年和家庭对疼痛康复的准备和参与:制定儿科远程医疗动机访谈协议。
Pub Date : 2021-10-28 eCollection Date: 2022-09-01 DOI: 10.1002/pne2.12063
Allison M Smith, Deirdre E Logan

Objective: Intensive interdisciplinary pain treatment (IIPT) is a promising approach for youth with complex, disabling, refractory pain conditions. However, youth and families who initiate IIPT without sufficient acceptance of its focus on functional rehabilitation or readiness to adopt a self-management approach to their pain may face challenges in IIPT and/or experience suboptimal outcomes. Motivational interviewing (MI) techniques have been shown to enhance readiness to make a number of health behavior changes for adults and youth, but it has not been systematically examined in the context of pediatric IIPT. The authors developed an MI telehealth intervention protocol explicitly designed to prepare youth and families for admission to IIPT.

Method: The protocol development process is detailed here, including influential models, expert consultation, and feedback from IIPT clinical experts. The intervention protocol was then piloted with a group of eligible families to elicit feedback and prompt further refining. Feasibility and acceptability were explored through measures of treatment engagement and satisfaction.

Results: The Promoting Readiness and Engagement in Pain Rehabilitation (PREPaRe) intervention protocol contains four modules aimed to enhance youth and parent readiness to adopt a self-management approach to persistent pain, through a motivational interviewing approach. Initial responses from the test group suggested high levels of treatment engagement and treatment satisfaction with PREPaRe.

Conclusions: PREPaRe appears feasible to administer and acceptable to families of youth with persistent pain seeking IIPT. Implications for implementation are discussed. Further study via randomized control trial is warranted.

Trial registration: ClinicalTrials.gov identifier: NCT04093921.

目的:对于患有复杂、致残性、难治性疼痛的青少年来说,跨学科疼痛强化治疗(IPT)是一种很有前景的方法。然而,如果青少年及其家人在开始接受跨学科疼痛治疗时,没有充分接受其对功能康复的关注,也没有准备好采用自我管理的方法来治疗疼痛,那么他们可能会在跨学科疼痛治疗中面临挑战,并且/或者体验到不理想的治疗效果。动机访谈(MI)技术已被证明可以提高成人和青少年改变健康行为的意愿,但在儿科 IIPT 中还没有系统的研究。作者开发了一种多元智能远程医疗干预方案,专门用于帮助青少年和家庭为加入 IIPT 做好准备:本文详细介绍了干预方案的制定过程,包括有影响力的模型、专家咨询以及 IIPT 临床专家的反馈意见。然后,在一组符合条件的家庭中对干预方案进行试点,以征求反馈意见并促使其进一步完善。通过对治疗参与度和满意度的测量,探讨了可行性和可接受性:促进疼痛康复的准备和参与(PREPaRe)干预方案包含四个模块,旨在通过动机访谈法提高青少年和家长采用自我管理方法治疗顽固性疼痛的准备程度。测试组的初步反应表明,PREPaRe 的治疗参与度和治疗满意度都很高:结论:PREPaRe 的实施似乎是可行的,并可为寻求 IIPT 的持续性疼痛青少年家庭所接受。讨论了实施的意义。有必要通过随机对照试验进行进一步研究:试验注册:ClinicalTrials.gov identifier:NCT04093921.
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引用次数: 0
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Paediatric & Neonatal Pain
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