Abstract：
Hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndromes (EDS) are frequently underdiagnosed, contributing to patient dissatisfaction in the healthcare system. This study evaluated the health service utilization, care, and subjective experiences of living with chronic illness among adults with HSD and EDS in the United States and Canada.
This was an anonymous, web-based, cross-sectional healthcare survey. The survey obtained basic demographic information, the Patient Assessment of Chronic Illness Care (PACIC+), as well as responses to questions on the use of healthcare and integrative medicine.
A total of 353 surveys were received. The most common complementary therapies used were physical therapy (82%), massage (68%), yoga (58%), chiropractic (48%), and meditation (43%). Mean (SD) summary PACIC and PACIC 5 As scores were 2.16 (0.77) and 2.25 (0.83), respectively. Across all PACIC domains, mean scores of individuals whose typical doctor visit was 30 min or at least an hour were significantly higher than those of individuals who indicated typical visits of 15 min (all p < 0.0001 by one-way ANOVA). There was widespread agreement on the importance of patient-provider relationship and trust, physicians\' understanding of the individual\'s complete medical history, and prioritization of physical and emotional safety (>95% agree or strongly agree to each).
Individuals with HSD or EDS report low satisfaction with chronic illness care and commonly seek out complementary and self-administered therapies, likely in an attempt to manage symptoms. Respondents reported a desire for greater time and attention from physicians. Results from this study could educate the healthcare community to improve support mechanisms for HSD and EDS populations.IMPLICATIONS FOR REHABILITATIONPatients with hypermobility spectrum disorders (HSD) or Ehlers-Danlos syndromes (EDS) express a desire for patient-centered care and peer support from other individuals with HSD or EDS.Individuals with HSD or EDS have typically seen multiple doctors for their condition and their satisfaction with chronic care, as measured by the Patient Assessment of Chronic Illness Care (PACIC+), is low.The use of various complementary and integrative health treatments, as well as specialized diets, is common in this population, and might be beneficial for symptom management.Healthcare delivery for HSD and EDS may require a multidisciplinary healthcare team, as complementary and self-care modalities are typically used in addition to physical therapy, pain medication, and other conventional care.
This was an anonymous, web-based, cross-sectional healthcare survey. The survey obtained basic demographic information, the Patient Assessment of Chronic Illness Care (PACIC+), as well as responses to questions on the use of healthcare and integrative medicine.
A total of 353 surveys were received. The most common complementary therapies used were physical therapy (82%), massage (68%), yoga (58%), chiropractic (48%), and meditation (43%). Mean (SD) summary PACIC and PACIC 5 As scores were 2.16 (0.77) and 2.25 (0.83), respectively. Across all PACIC domains, mean scores of individuals whose typical doctor visit was 30 min or at least an hour were significantly higher than those of individuals who indicated typical visits of 15 min (all p < 0.0001 by one-way ANOVA). There was widespread agreement on the importance of patient-provider relationship and trust, physicians\' understanding of the individual\'s complete medical history, and prioritization of physical and emotional safety (>95% agree or strongly agree to each).
Individuals with HSD or EDS report low satisfaction with chronic illness care and commonly seek out complementary and self-administered therapies, likely in an attempt to manage symptoms. Respondents reported a desire for greater time and attention from physicians. Results from this study could educate the healthcare community to improve support mechanisms for HSD and EDS populations.IMPLICATIONS FOR REHABILITATIONPatients with hypermobility spectrum disorders (HSD) or Ehlers-Danlos syndromes (EDS) express a desire for patient-centered care and peer support from other individuals with HSD or EDS.Individuals with HSD or EDS have typically seen multiple doctors for their condition and their satisfaction with chronic care, as measured by the Patient Assessment of Chronic Illness Care (PACIC+), is low.The use of various complementary and integrative health treatments, as well as specialized diets, is common in this population, and might be beneficial for symptom management.Healthcare delivery for HSD and EDS may require a multidisciplinary healthcare team, as complementary and self-care modalities are typically used in addition to physical therapy, pain medication, and other conventional care.
摘要：
未经证实：高移动频谱障碍（HSD）和Ehlers-Danlos综合征（EDS）经常被诊断不足，导致医疗保健系统中患者的不满。本研究评估了卫生服务利用情况，care,以及美国和加拿大HSD和EDS成人患有慢性病的主观体验。
未经授权：这是匿名的，基于网络的，横断面医疗保健调查。调查获得了基本的人口统计信息，慢性病护理患者评估(PACIC+)，以及对医疗保健和综合医学使用问题的回答。
未经评估：共收到353项调查。最常见的补充疗法是物理治疗（82%），按摩（68%），瑜伽（58%）脊椎指压疗法（48%），冥想（43%）。平均（SD）汇总PACIC和PACIC5As评分分别为2.16（0.77）和2.25（0.83），分别。在所有PACIC域中，典型就诊时间为30分钟或至少1小时的个体的平均得分明显高于典型就诊时间为15分钟的个体(单向方差分析均p<0.0001).人们普遍同意患者与提供者关系和信任的重要性，医生了解个人的完整病史，并优先考虑身体和情绪安全（>95％同意或强烈同意每个）。
UNASSIGNED：患有HSD或EDS的人报告对慢性病护理的满意度较低，通常会寻求补充和自我管理的疗法，可能是为了控制症状。受访者表示希望获得更多的时间和医生的关注。这项研究的结果可以教育医疗保健社区改善HSD和EDS人群的支持机制。高移动频谱障碍（HSD）或Ehlers-Danlos综合征（EDS）患者表达了对其他HSD或EDS患者以患者为中心的护理和同伴支持的愿望。患有HSD或EDS的人通常会因其病情和对慢性护理的满意度而看过多位医生，根据患者慢性病护理评估(PACIC+)，是低的。使用各种补充和综合的健康治疗方法，以及专门的饮食，在这个人群中很常见，可能对症状管理有益。HSD和EDS的医疗保健交付可能需要多学科医疗保健团队，作为补充和自我护理模式通常使用除了物理治疗，止痛药,和其他常规护理。
未经授权：这是匿名的，基于网络的，横断面医疗保健调查。调查获得了基本的人口统计信息，慢性病护理患者评估(PACIC+)，以及对医疗保健和综合医学使用问题的回答。
未经评估：共收到353项调查。最常见的补充疗法是物理治疗（82%），按摩（68%），瑜伽（58%）脊椎指压疗法（48%），冥想（43%）。平均（SD）汇总PACIC和PACIC5As评分分别为2.16（0.77）和2.25（0.83），分别。在所有PACIC域中，典型就诊时间为30分钟或至少1小时的个体的平均得分明显高于典型就诊时间为15分钟的个体(单向方差分析均p<0.0001).人们普遍同意患者与提供者关系和信任的重要性，医生了解个人的完整病史，并优先考虑身体和情绪安全（>95％同意或强烈同意每个）。
UNASSIGNED：患有HSD或EDS的人报告对慢性病护理的满意度较低，通常会寻求补充和自我管理的疗法，可能是为了控制症状。受访者表示希望获得更多的时间和医生的关注。这项研究的结果可以教育医疗保健社区改善HSD和EDS人群的支持机制。高移动频谱障碍（HSD）或Ehlers-Danlos综合征（EDS）患者表达了对其他HSD或EDS患者以患者为中心的护理和同伴支持的愿望。患有HSD或EDS的人通常会因其病情和对慢性护理的满意度而看过多位医生，根据患者慢性病护理评估(PACIC+)，是低的。使用各种补充和综合的健康治疗方法，以及专门的饮食，在这个人群中很常见，可能对症状管理有益。HSD和EDS的医疗保健交付可能需要多学科医疗保健团队，作为补充和自我护理模式通常使用除了物理治疗，止痛药,和其他常规护理。
