Longitudinal Determination of Outcomes of Adolescents with Fibromyalgia

青少年纤维肌痛结局的纵向测定

基本信息

批准号：
7661999
负责人：
Susmita Kashikar-Zuck
金额：
$ 41.36万
依托单位：
CINCINNATI CHILDRENS HOSP MED CTR
依托单位国家：
美国
项目类别：
财政年份：
2009
资助国家：
美国
起止时间：
2009-08-01 至 2014-07-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/7661999
关键词：
15 year old 19 year old Achievement Adolescence Adolescent Adult Affect Age Anti-Inflammatory Agents Anti-inflammatory Antidepressive Agents Anxiety Anxiety Disorders Arts Caring Childhood Chronic Clinical Clinical Trials Comorbidity Complex Country DSM-IV Data Data Set Development Diagnosis Disabled Persons Disease Disease remission Distress Dose Early Diagnosis Early identification Early treatment Educational Status Emotional Enrollment Exercise Family Family member Fatigue Feeling suicidal Fibromyalgia Future Goals Guidelines Impairment Individual Intervention Interview Investigation Knowledge Life Long-Term Effects Longitudinal Studies Medical Methods Mood Disorders Moods Morbidity - disease rate Outcome Pain Participant Patient Care Patients Persistent pain Persons Pharmaceutical Preparations Physical Function Positioning Attribute Prevalence Preventive Intervention Primary Fibromyalgias Process Prospective Studies Protocols documentation Quality of life Recommendation Relative (related person)Reporting Research Resources Rheumatology Risk Schools Severities Sleep Social Functioning Social Problems Specific qualifier value Stress Stress and Coping Subgroup Surveys Symptoms Syndrome Techniques Testing Time Tricyclic Antidepressive Agents Work accomplished suicide base chronic pain clinical care clinically relevant cognitive behavior therapy cohort coping daily functioning depression depressive symptoms design disability emerging adult experience functional disability improved interdisciplinary approach longitudinal course meetings outcome forecast peer primary outcome prospective psychosocial public health relevance research study response skills social standard of care symptom management young adult

项目摘要

DESCRIPTION (provided by applicant): Fibromyalgia syndrome (FMS) is a chronic and often debilitating condition that results in marked difficulties in daily functioning, psychiatric comorbidity and decreased quality of life. Many adult FMS patients report that their symptoms began earlier in life, when the symptoms may have been more amenable to early intervention. However, the developmental course of FMS and its associated symptoms from adolescence through adulthood has never been documented. Prospective longitudinal studies of patients diagnosed with fibromyalgia in adolescence are urgently needed. In this study, we propose to prospectively follow 96 patients diagnosed with juvenile primary fibromyalgia syndrome (JPFS) and 48 healthy controls into their young adult years. These participants are currently enrolled in our completed and ongoing JPFS research, and have completed baseline assessment (Time 1, Mean age 15 years). A Time 2 protocol has been recently implemented to assess current functioning (Mean age 19 years). So far we have demonstrated excellent cohort retention (90%), and preliminary results suggest that as a group, JPFS patients continue to have significant physical and emotional difficulties, but there is considerable variability in outcomes. Participants are now approaching the crucial young adult years, a time of rapid change and new challenges that places greater stress on coping resources for those who are already dealing with chronic pain. We are proposing two additional assessments for the entire cohort in the young adult years (Time 3, Mean Age = 22 years; and Time 4, Mean Age = 24 years). In this controlled, prospective longitudinal study, the primary objective is to first establish whether JPFS patients continue to have greater physical symptoms and impairment, psychiatric symptoms and social difficulties in young adulthood than healthy controls. The secondary objective is to examine developmental trajectories of two key outcomes: physical impairment and depressive symptoms, from adolescence through young adulthood. For each outcome, we hypothesize three distinct trajectories: those who show low initial impairment and continue to show little impairment into young adulthood, those who are initially impaired and get worse over time, and those who are initially impaired but improve over time. We will test whether trajectories of physical impairment and depressive symptoms are independent of one another, and in doing so, we will be able to disentangle aspects of mood from impairment associated with FMS. Moreover, we will test whether change in FMS symptom severity is differentially associated with physical impairment or depressive symptoms. Finally, we will test whether treatment via cognitive-behavioral therapy in adolescence has any persisting effects on long-term outcomes. Information will be gathered from participants and family member/ significant others via on-line surveys. Psychiatric interviews and tender point exams will be conducted in person. The long-term goal is to develop more refined methods to identify patients who are at risk for negative trajectories of physical and emotional outcomes and to design early, targeted interventions. PUBLIC HEALTH RELEVANCE: This project will be the first controlled prospective longitudinal study of adolescents with JPFS. The results will greatly increase our knowledge about the prognosis for patients with JPFS, and the complex relationship between physical and emotional symptoms in fibromyalgia syndrome. Findings will be of direct clinical relevance with respect to knowledge about physical, emotional and social outcomes for JPFS patients, and early identification of those who may be at risk for long term suffering and disability. The study will lay the groundwork for future clinical trials aimed at early and targeted interventions for JPFS.

描述（由申请人提供）：纤维肌痛综合征（FMS）是一种慢性且经常使人衰弱的状况，导致日常功能，精神病合并症和生活质量降低的明显困难。许多成年FMS患者报告说，当症状可能更适合早期干预时，他们的症状始于生命。但是，FMS的发育过程及其从青春期到成年的相关症状从未被记录。迫切需要对青春期诊断患有纤维肌痛的患者的前瞻性纵向研究。在这项研究中，我们建议前瞻性地跟踪96名被诊断出患有少年原发性纤维肌痛综合征（JPFS）的患者和年轻人的48个健康对照。这些参与者目前已入学我们的JPFS研究和正在进行的JPFS研究，并完成了基线评估（时间1，平均年龄15岁）。最近已经实施了时间2协议来评估当前功能（平均年龄19岁）。到目前为止，我们已经证明了出色的队列保留率（90％），初步结果表明，作为一个小组，JPFS患者继续遇到严重的身体和情感困难，但结局的可变性很大。参与者现在正在接近至关重要的年轻人年，这是一个快速变化的时期和新的挑战，这给已经应对慢性疼痛的人面对应对资源的压力更大。我们在年轻人年（时间3，平均年龄= 22岁；时间4，平均年龄= 24岁）提议对整个队列的额外评估。在这项受控的，前瞻性的纵向研究中，主要目标是首先确定JPFS患者在年轻对照中的身体症状和障碍，精神病症状和社会困难是否比健康对照组更大。次要目标是检查两个关键结果的发育轨迹：从青春期到成年后的身体障碍和抑郁症状。对于每个结果，我们都假设三个不同的轨迹：那些表现出低最初的损害的人，并继续显示出年轻成年的损害，那些最初会受到损害和随着时间的流逝而变得更糟的人，以及那些最初受到损害但会随着时间而变化的人。我们将测试身体障碍和抑郁症状的轨迹是否彼此独立，在此过程中，我们将能够将情绪的方面摆脱与FMS相关的损害。此外，我们将测试FMS症状严重程度的变化是否与身体障碍或抑郁症状有关。最后，我们将测试青春期通过认知行为疗法的治疗是否对长期结局有任何持续的影响。通过在线调查，将从参与者和家人/重要的其他人那里收集信息。精神科访谈和招标点考试将亲自进行。长期目标是开发更精致的方法，以识别有身体和情感结果负面轨迹的患者，并提早设计针对性的干预措施。公共卫生相关性：该项目将是对JPFS青少年的首次受控的前瞻性纵向研究。结果将大大增加我们对JPF患者预后的了解，以及纤维肌痛综合征中身体和情绪症状之间的复杂关系。关于JPFS患者的身体，情感和社会成果的知识，发现结果将是直接的临床相关性，以及对可能有长期苦难和残疾风险的人的早期识别。该研究将为未来的临床试验奠定基础，该试验针对JPF的早期和有针对性的干预措施。