血友病患者的疼痛患病率、特征和影响：来自葡萄牙首次调查的结果及其对疼痛管理的启示。

Pain Prevalence, Characteristics, and Impact Among People with Hemophilia: Findings from the First Portuguese Survey and Implications for Pain Management.

机构信息

Life and Health Sciences Research Institute (ICVS), School of Medicine, University of Minho, Braga, Portugal.

ICVS/3B's - PT Government Associate Laboratory, Braga/Guimarães, Portugal.

出版信息

Pain Med. 2020 Mar 1;21(3):458-471. doi: 10.1093/pm/pny309.

DOI:10.1093/pm/pny309

PMID:30812031

Abstract

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.

摘要

背景

血友病是一种罕见的疾病，其特征是自发性出血，疼痛是一个关键方面。然而，葡萄牙从未对血友病相关疼痛进行过系统评估。

目的

通过描述葡萄牙血友病患者（PWH）的疼痛发生率、特征、影响，以及揭示血友病相关疼痛护理领域的干预需求，了解他们的疼痛体验。

方法

采用横断面观察性研究，针对疼痛、情绪困扰和生活质量的问题，分别由 104 名成年人、21 名儿童/青少年（10-17 岁）和 19 名儿童（1-9 岁）回答了年龄适应的版本。

结果

82 名成年人（78.8%）、16 名儿童/青少年（76.2%）和 13 名儿童（68.4%）报告有疼痛，其中 65 名（62.5%）、13 名（61.9%）和 8 名（42.1%）疼痛持续时间超过三个月。成年人疼痛部位的平均数量（标准差）为 5.23（3.95），儿童/青少年为 4.13（3.48），1-9 岁儿童为 3.15（1.99），下肢疼痛造成的负面影响最大。更频繁的疼痛触发因素是体力活动/运动（61 名，74.4%），对于年轻组是关节积血（儿童/青少年：14 名，87.5%；儿童：9 名，69.2%）。出血导致的疼痛平均强度最高（成年人：M [SD] = 5.67 [2.09]；儿童/青少年：M [SD] = 5.69 [2.15]）。有疼痛的成年人表现出更多的焦虑（比值比 [OR] = 1.698，P = 0.003）和抑郁（OR = 1.961，P = 0.025）以及较低的生活质量（OR = 0.928，P = 0.001）。