NeuroHealth Lab, Appleton Institute, School of Health, Medical and Applied Sciences, Central Queensland University, Brisbane, Australia.
Compassionate Mind Research Group, School of Psychology, University of Queensland, Brisbane, Australia.
Qual Life Res. 2023 Jan;32(1):127-137. doi: 10.1007/s11136-022-03216-w. Epub 2022 Aug 16.
Lipoedema is a progressive adipose (fat) disorder, and little is known about its psychological effect. This study aimed to determine the experiences of physical and mental health and health care across stages of lipoedema.
Cross-sectional, secondary data from an anonymous survey (conducted 2014-2015) in Dutch and English in those with self-reported lipoedema were used (N = 1,362, Mdnage = 41-50 years old, 80.2% diagnosed). χ analyses of categorical data assessed lipoedema stage groups 'Stage 1-2' (N = 423), 'Stages 3-4' (N = 474) and 'Stage Unknown' (N = 406) experiences of health (physical and psychological), and health care.
Compared to 'Stage 1-2', 'Stage 3-4' reported more loss of mobility (p = < .001), pain (p = < .001), fatigue (p = .002), problems at work (p = < .001) and were seeking treatment to improve physical functioning (p = < .001) more frequently. 'Stage 3-4' were more likely to report their GP did not have knowledge of lipoedema, did not take them seriously, gave them diet and lifestyle advice, dismissed lipoedema, and treated them 'badly' due to overweight/lipoedema compared to 'Stage 1-2' (p = < .001). 'Stage 3-4' were more likely to report depression (p = < .001), emotional lability (p = .033) eating disorders (p = .018) and feeling lonelier, more fearful, and stayed at home more (p = < .001) and less likely to have visited a psychologist (p = < .001) compared to 'Stage 1-2'.
A divergent pattern of physical and psychological experiences between lipoedema stages reflects physical symptom differences and differences in psychological symptoms and health care experiences. These findings increase the understanding of lipoedema symptoms to inform psychological supports for women with lipoedema in navigating chronic health care management.
脂肪营养不良是一种渐进性脂肪（脂肪）疾病，其心理影响知之甚少。本研究旨在确定脂肪营养不良各阶段的身体和心理健康以及医疗保健的体验。
使用荷兰语和英语进行的匿名调查（2014-2015 年进行）的横断面，二次数据分析了自我报告为脂肪营养不良的人群（N=1362，中位年龄 41-50 岁，80.2%被诊断）。分类数据的 χ 分析评估了脂肪营养不良阶段组“阶段 1-2”（N=423）、“阶段 3-4”（N=474）和“阶段未知”（N=406）的健康（身体和心理）和医疗保健体验。
与“阶段 1-2”相比，“阶段 3-4”报告了更多的行动不便（p<.001）、疼痛（p<.001）、疲劳（p=.002）、工作问题（p<.001）和更频繁地寻求治疗以改善身体功能（p<.001）。与“阶段 1-2”相比，“阶段 3-4”的全科医生更有可能不知道脂肪营养不良，不认真对待他们，给他们饮食和生活方式的建议，忽视脂肪营养不良，并因超重/脂肪营养不良而对他们“不好”（p<.001）。与“阶段 1-2”相比，“阶段 3-4”更有可能报告抑郁（p<.001）、情绪不稳定（p=.033）、饮食失调（p=.018）、感到更孤独、更恐惧、更多地呆在家里（p<.001），并且不太可能去看心理学家（p<.001）。
脂肪营养不良阶段之间身体和心理体验的不同模式反映了身体症状的差异以及心理症状和医疗保健体验的差异。这些发现增加了对脂肪营养不良症状的理解，为女性提供心理支持，以帮助她们在慢性医疗保健管理中应对。
