Latham Keziah, Baranian Mohammad, Timmis Matthew, Pardhan Shahina
Visual Function and Physiology Research Group, Anglia Ruskin University, Cambridge, United Kingdom.
Vision and Eye Research Unit, Anglia Ruskin University, Cambridge, United Kingdom.
PLoS One. 2015 Dec 29;10(12):e0145866. doi: 10.1371/journal.pone.0145866. eCollection 2015.
To understand the emotional difficulties associated with living with the ocular condition Retinitis Pigmentosa, and to examine the functioning of a self-report instrument used to assess this construct.
The difficulty of goals and tasks in the emotional health domain of the Dutch ICF Activity Inventory were rated by 166 people with Retinitis Pigmentosa in a cross-sectional study. Demographic factors were also assessed.
Responses to the 23 emotional health tasks were Rasch analysed and could be used to form either one 20 item overview scale with some multidimensionality, or three unidimensional subscales addressing feelings (4 items), communicating visual loss (5 items) and fatigue (7 items). The most difficult individual tasks related to communicating visual loss to other people, and dealing with feelings such as frustration, anxiety and stress. The use of mobility aids and female gender were associated with increased difficulty with emotional health, explaining 19% of the variance in the overview scale.
The emotional health domain of the Dutch ICF Activity Inventory is a valid tool to assess emotional difficulties arising from visual loss. Interventions to aid people with Retinitis Pigmentosa deal with emotional difficulties should particularly address communicating vision loss effectively to others and coping with negative feelings.
了解与患有色素性视网膜炎这种眼部疾病相伴而生的情绪困扰，并检验一种用于评估这一概念的自我报告工具的功能。
在一项横断面研究中，166名色素性视网膜炎患者对荷兰版国际功能、残疾和健康分类（ICF）活动量表中情绪健康领域的目标和任务难度进行了评分。还评估了人口统计学因素。
对23项情绪健康任务的回答进行了拉施分析，结果可用于形成一个具有一定多维性的包含20个条目的总体量表，或三个单维子量表，分别涉及感受（4个条目）、交流视力丧失情况（5个条目）和疲劳（7个条目）。最困难的个体任务与向他人交流视力丧失情况以及应对挫折、焦虑和压力等情绪有关。使用移动辅助工具和女性性别与情绪健康方面难度增加有关，这解释了总体量表中19%的方差。
荷兰版ICF活动量表中的情绪健康领域是评估因视力丧失而产生的情绪困扰的有效工具。帮助色素性视网膜炎患者应对情绪困扰的干预措施应特别关注如何有效地向他人传达视力丧失情况以及应对负面情绪。
