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：
8126233
负责人：
Susmita Kashikar-Zuck
金额：
$ 40.62万
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/8126233
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 Caring Childhood Chronic Clinical Clinical Trials Cognitive Therapy 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 Health Impairment Individual Intervention Interview Investigation Knowledge Life Long-Term Effects Longitudinal Studies Medical Mental Depression 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 cohort coping daily functioning depressive symptoms design disability emerging adult experience functional disability improved interdisciplinary approach longitudinal course meetings outcome forecast peer primary outcome prospective psychosocial 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) 是一种慢性且常常使人衰弱的疾病，会导致日常功能明显困难、精神合并症和生活质量下降。许多成年 FMS 患者报告称，他们的症状很早就开始出现，此时症状可能更适合早期干预。然而，FMS 的发展过程及其从青春期到成年期的相关症状从未有过记录。迫切需要对青春期诊断为纤维肌痛的患者进行前瞻性纵向研究。在这项研究中，我们计划对 96 名被诊断患有青少年原发性纤维肌痛综合征 (JPFS) 的患者和 48 名健康对照者进行前瞻性随访，直至他们成年。这些参与者目前已加入我们已完成和正在进行的 JPFS 研究，并已完成基线评估（时间 1，平均年龄 15 岁）。最近实施了 Time 2 协议来评估当前功能（平均年龄 19 岁）。到目前为止，我们已经表现出出色的队列保留率（90%），初步结果表明，作为一个群体，JPFS 患者仍然存在明显的身体和情感困难，但结果存在相当大的差异。参与者现在正接近关键的青年时期，这是一个快速变化和新挑战的时期，这给那些已经在应对慢性疼痛的人的应对资源带来了更大的压力。我们提议对整个青年群体进行两项额外评估（时间 3，平均年龄 = 22 岁；时间 4，平均年龄 = 24 岁）。在这项对照、前瞻性纵向研究中，主要目标是首先确定 JPFS 患者在成年初期是否比健康对照组继续存在更严重的身体症状和损伤、精神症状和社交困难。第二个目标是检查两个关键结果的发展轨迹：从青春期到成年早期的身体损伤和抑郁症状。对于每种结果，我们假设三种不同的轨迹：那些最初表现出较低损伤并在成年后继续表现出很少损伤的人，那些最初受到损伤并随着时间的推移而变得更糟的人，以及那些最初受到损伤但随着时间的推移而改善的人。我们将测试身体损伤和抑郁症状的轨迹是否相互独立，通过这样做，我们将能够将情绪的各个方面与 FMS 相关的损伤区分开来。此外，我们将测试 FMS 症状严重程度的变化是否与身体损伤或抑郁症状存在差异相关。最后，我们将测试青春期认知行为疗法是否对长期结果有任何持续影响。将通过在线调查从参与者和家庭成员/重要其他人那里收集信息。精神病学访谈和压痛点检查将亲自进行。长期目标是开发更精细的方法来识别有身体和情绪结果负面轨迹风险的患者，并设计早期、有针对性的干预措施。公共卫生相关性：该项目将是第一个针对 JPFS 青少年的对照前瞻性纵向研究。这些结果将大大增加我们对 JPFS 患者预后以及纤维肌痛综合征身体和情绪症状之间复杂关系的了解。研究结果对于了解 JPFS 患者的身体、情感和社会结果以及早期识别可能面临长期痛苦和残疾风险的患者具有直接的临床意义。该研究将为未来旨在对 JPFS 进行早期和有针对性的干预的临床试验奠定基础。