Longitudinal Determination of Outcomes of Adolescents with Fibromyalgia

青少年纤维肌痛结局的纵向测定

• 批准号: 8289666
• 负责人: Susmita Kashikar-Zuck
• 金额: $ 39.44万
• 依托单位: CINCINNATI CHILDRENS HOSP MED CTR
• 依托单位国家: 美国
• 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/8289666
• 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

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(申请人提供)：纤维肌痛综合征(FMS)是一种慢性疾病，通常使人虚弱，导致日常功能明显困难，精神共病和生活质量下降。许多成年FMS患者报告说，他们的症状在生活的早期就开始了，当时这些症状可能更适合早期干预。然而，从青春期到成年期，FMS的发展过程及其相关症状从未被记录在案。迫切需要对青春期纤维肌痛患者进行前瞻性纵向研究。在这项研究中，我们建议前瞻性地跟踪96名被诊断为青少年原发性纤维肌痛综合征(JPFS)的患者和48名健康对照，直到他们的青壮年。这些参与者目前参加了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方案，以评估目前的功能(平均年龄19岁)。到目前为止，我们已经证明了良好的队列保留率(90%)，初步结果表明，作为一个群体，JPFS患者继续存在显著的身体和情感困难，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的挑战的时代，对那些已经在应对慢性疼痛的人来说，应对资源施加了更大的压力。我们建议对整个队列在青壮年进行两次额外评估(时间3，平均年龄=22岁；时间4，平均年龄=24岁)。在这项对照的前瞻性纵向研究中，主要目标是首先确定JPFS患者在青年时期是否继续有比健康对照组更严重的身体症状和损害、精神症状和社交困难。第二个目标是检查从青春期到成年的两个关键结果：身体损伤和抑郁症状的发展轨迹。对于每种结果，我们假设了三种不同的轨迹：那些最初表现出较低损害并在年轻成年时继续表现出很少损害的人，那些最初受到损害并随着时间的推移而变得更糟的人，以及那些最初受到损害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从与FMS相关的损伤中分离出来。此外，我们将测试FMS症状严重程度的变化是否与身体损害或抑郁症状有不同的关联。最后，我们将测试青春期通过认知行为疗法进行的治疗是否对长期结果有任何持久的影响。将通过在线调查从参与者和家庭成员/重要的其他人那里收集信息。精神科面谈和投标点检查将亲自进行。长期目标是开发更精细的方法来识别哪些患者存在身体和情绪结果负面轨迹的风险，并设计早期的有针对性的干预措施。公共卫生相关性：该项目将是对患有JPF的青少年进行的第一项对照前瞻性纵向研究。这一结果将极大地增加我们对JPFS患者预后的了解，以及纤维肌痛综合征中身体和情感症状之间的复杂关系。研究结果将直接与临床相关，有助于了解JPFS患者的身体、情感和社会后果，并及早识别那些可能面临长期痛苦和残疾风险的人。这项研究将为未来的临床试验奠定基础，旨在对JPF进行早期和有针对性的干预。