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首页> 外文期刊>Pain medicine : >Pain Prevalence, Characteristics, and Impact Among People with Hemophilia: Findings from the First Portuguese Survey and Implications for Pain Management
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Pain Prevalence, Characteristics, and Impact Among People with Hemophilia: Findings from the First Portuguese Survey and Implications for Pain Management

机译：血友病患者的疼痛患病率，特征和影响：从第一个葡萄牙调查的调查结果和对疼痛管理的影响

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Background. Hemophilia is a rare disorder characterized by spontaneous bleeding, with pain being a critical aspect. However, a systematic assessment of hemophilia-related pain in Portugal has never been conducted. Objective. To understand the pain experience among Portuguese people with hemophilia (PWH) by describing its prevalence, characteristics, and impact and uncovering intervention needs in the realm of hemophilia-related pain care. Methods. A cross-sectional observational survey, with age-adapted versions of questions concerning pain, emotional distress, and quality of life, was answered by 104 adults, 21 children/teenagers (10-17 years), and 19 children (1-9 years). Results. Pain was reported by 82 (78.8%) adults, 16 (76.2%) children/teenagers, and 13 (68.4%) children, with 65 (62.5%), 13 (61.9%), and eight (42.1%) of them reporting pain lasting more than three months, respectively. The mean number of pain locations (SD) was 5.23 (3.95) for adults, 4.13 (3.48) for children/teenagers, and 3.15 (1.99) for children age 1-9 years, with lower limbs pain causing the greatest negative impact. More frequent pain-triggering factors were physical effort/movements (61, 74.4%) for adults and hemarthrosis for younger groups (children/teenagers: 14, 87.5%; children: 9, 69.2%). Bleeds yielded the highest mean pain intensity (adults: M [SD] = 5.67 [2.09]; children/teenagers: M [SD] = 5.69 [2.15]). Adults with pain revealed more anxiety (odds ratio [OR] =1.698, P= 0.003) and depression (OR = 1.961, P= 0.025) and lower quality of life (OR = 0.928, P= 0.001). Conclusions. The current findings highlight the high prevalence, duration, and frequency of pain at all ages, its potentially simultaneous acute and chronic nature, its likelihood to affect multiple locations concurrently, and its detrimental impact. Important insights concerning intervention needs are presented, ultimately contributing to the improvement of hemophilia-related pain management and patient care.
机译：背景。血友病是一种罕见的疾病，其特征在于自发性出血，疼痛是一个关键方面。然而，从未进行过血友病相关疼痛的系统评估。客观的。通过描述其在血友病相关疼痛护理领域的患病率，特征和影响和揭示干预需求，了解葡萄牙血友（PWH）中葡萄牙人（PWH）中的疼痛体验。方法。 104名成人，21名儿童/青少年（10-17岁）和19名儿童（1 - 9年）回答了横断面观测调查）。结果。 82名（78.8％）的成人，16名（76.2％）儿童/青少年和13名儿童，13名（62.5％），13（61.9％）和其中八（42.1％）的报告报告痛苦分别超过三个月。成人的平均止痛点（SD）为5.23（3.95），儿童/青少年4.13（3.48），3.15（1.99）为1-9岁的儿童，肢体疼痛较低，导致最大的负面影响。更频繁的痛苦触发因子是年幼团体的成人和血液出现的体力/运动（61,74.4％）（儿童/青少年：14,87.5％;儿童：9,69.2％）。出血产生最高的平均疼痛强度（成人：M [SD] = 5.67 [2.09];儿童/青少年：M [SD] = 5.69 [2.15]）。患有痛苦的成年人揭示了更多的焦虑（差距[或] = 1.698，p = 0.003）和抑郁症（或= 1.961，P = 0.025）和较低的寿命（或= 0.928，P = 0.001）。结论。目前的调查结果突出了所有年龄段，其可能同时急性和慢性自然的高患病率，持续时间和频率，其可能会同时影响多个地点，以及其有害影响。提出了有关干预需求的重要见解，最终有助于改善血友病相关的疼痛管理和患者护理。

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