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1.
Am J Med Genet A ; 188(4): 1109-1117, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-34989147

RESUMEN

Ehlers-Danlos syndrome (EDS) is a heterogeneous group of inherited disorders of connective tissue. EDS hypermobility type (EDS-HT), characterized by joint hypermobility, is most common and increasingly recognized in pediatrics. Treatment involves protecting joints, preventing injuries, and managing symptoms/comorbidities. Pediatric EDS-HT patients often see multiple medical providers; however, data on healthcare utilization (HCU) in this population are lacking. This retrospective, electronic chart review examines HCU data 1 year prior and subsequent to a new diagnosis of EDS-HT using Villefranche criteria. Demographics, diagnoses, and HCU (office visits, therapies, hospital encounters/procedures, and tests) were obtained for N = 102 youth attending a Connective Tissue Disorder Clinic over a 21-month timeframe. After EDS-HT diagnosis, HCU patterns shifted to reflect greater involvement of therapy (physical, psychological, and occupational) and symptom management. More genetics, rheumatology, and orthopedics visits occurred prediagnosis, and more physical therapy, pain management, cardiology, and neurology visits occurred postdiagnosis. Testing and hospital encounter/procedure frequencies did not change. Overall, the pattern of HCU changed from diagnostic to treatment, in accordance with evidence-based EDS-HT care. Understanding HCU patterns of pediatric patients with EDS-HT can elucidate patient interaction with the health care system, with the potential to inform and improve the standard of care.


Asunto(s)
Enfermedades del Tejido Conjuntivo , Síndrome de Ehlers-Danlos , Inestabilidad de la Articulación , Adolescente , Niño , Síndrome de Ehlers-Danlos/diagnóstico , Síndrome de Ehlers-Danlos/epidemiología , Síndrome de Ehlers-Danlos/terapia , Humanos , Inestabilidad de la Articulación/diagnóstico , Inestabilidad de la Articulación/epidemiología , Inestabilidad de la Articulación/terapia , Aceptación de la Atención de Salud , Estudios Retrospectivos
2.
J Pediatr Psychol ; 47(9): 1044-1056, 2022 09 15.
Artículo en Inglés | MEDLINE | ID: mdl-35582894

RESUMEN

OBJECTIVE: School anxiety is a prevalent mental health concern that drives school-related disability among youth with chronic pain. The only available measure of school anxiety-the School Anxiety Inventory, Short Version (SAI-SV)-lacks content specificity for measuring school anxiety in pediatric pain populations. We aimed to refine the SAI-SV by obtaining qualitative data about unique school situations that are anxiety-provoking for youth with pain and characterizing the nature of symptoms experienced in these situations. METHODS: Adolescents with chronic pain (n = 16) completed a semistructured interview focused on experiences with anxiety in school-related academic and social contexts. We employed thematic analysis to extend the empirical understanding of school anxiety from the perspective of patients suffering from pain and to generate new item content. The content was refined with iterative feedback from a separate group of adolescents with chronic pain (n = 5) and a team of expert pain psychologists (n = 3). RESULTS: We identified six themes within the data and generated new items designed to capture anxiety related to negative interactions with teachers and peers, falling behind with schoolwork, and struggles with concentration and fatigue. Participants and experts rated new item content as highly relevant for use among youth with pain. The updated item bank was named the School Anxiety Inventory for Chronic Pain. CONCLUSIONS: Future research is needed to complete the psychometric evaluation of the item bank and finalize items to be included in a measure that can be used in research and clinical settings. Implications for treating school-related anxiety among youth with pain are also discussed.


Asunto(s)
Dolor Crónico , Adolescente , Ansiedad/diagnóstico , Ansiedad/psicología , Niño , Dolor Crónico/psicología , Humanos , Psicometría , Instituciones Académicas , Encuestas y Cuestionarios
3.
J Pediatr Psychol ; 45(3): 233-238, 2020 04 01.
Artículo en Inglés | MEDLINE | ID: mdl-31633793

RESUMEN

OBJECTIVE: Despite the availability of measures for assessing physical, psychological, and health impact in children with chronic pain, there are not established guidelines for interpretation of children's pain outcomes following psychological treatment. The purpose of this topical review is to discuss clinical significance as a neglected area of consideration in pediatric chronic pain assessment and to make recommendations on how the field can move toward benchmarking on core outcome domains. METHOD: We review definitions of clinical significance and examples of several methodologies that have been used in other populations or are emerging in pediatric chronic pain including anchor-based methods, distribution-based methods, or multimethod approaches. RESULTS: Few measures across pediatric chronic pain outcome domains have established clinical significance of scores to interpret meaningful change following treatment limiting the interpretability of findings from clinical trials. In the context of clinical practice, several efforts to examine clinical significance to improve the translation of evidence-based measurement into standard clinical decision-making exist. CONCLUSIONS: Recommendations are provided to encourage additional validation efforts of outcome measures in pediatric chronic pain and to encourage authors to report clinical significance in clinical trials of psychological interventions for pediatric chronic pain.


Asunto(s)
Dolor Crónico/psicología , Dimensión del Dolor/métodos , Adolescente , Niño , Humanos
4.
J Pediatr Psychol ; 44(4): 436-441, 2019 05 01.
Artículo en Inglés | MEDLINE | ID: mdl-30649388

RESUMEN

OBJECTIVE: The current study tested the utility of the PROMIS Pediatric Pain Interference (PPI) in relation to the widely-used Functional Disability Inventory (FDI) in a small-scale clinical trial. METHODS: Forty youth with juvenile fibromyalgia (JFM) were randomized to either CBT only or a combined CBT and neuromuscular exercise group (i.e., FIT Teens). Participants completed the PPI and FDI at baseline, post-treatment, and three-month follow-up. RESULTS: The PPI and FDI were significantly correlated at baseline (r = .51) and post treatment (r = .53), and demonstrated similar improvements (d PPI = .87, d FDI = 1.22, p < .05) at post-treatment following FIT Teens. Following CBT only, neither the PPI nor the FDI improved significantly. CONCLUSIONS: The PPI may be appropriate for use in non-pharmacologic interventions for pediatric pain.


Asunto(s)
Terapia Cognitivo-Conductual , Terapia por Ejercicio/métodos , Fibromialgia/terapia , Adolescente , Niño , Terapia Combinada , Femenino , Fibromialgia/psicología , Humanos , Masculino , Dimensión del Dolor , Resultado del Tratamiento
5.
J Pediatr Gastroenterol Nutr ; 64(5): 685-690, 2017 05.
Artículo en Inglés | MEDLINE | ID: mdl-27437930

RESUMEN

INTRODUCTION: For a large portion of youth, pain-associated functional gastrointestinal disorders (FGIDs) are associated with significant impairment over time. Clinically feasible methods to categorize youth with FGIDs at greatest risk for persistent pain-related impairment have not yet been identified. METHODS: Measures of functional disability, pain intensity, and anxiety were collected on 99 patients with FGIDs (ages 8-18) during a visit to a pediatric gastroenterology office to assess for the presence of risk. Follow-up data were obtained on a subset of this sample (n = 64) after 6 months, either in person or via mail. The present study examined whether a greater number of risk factors at baseline predicted greater pain-related disability at follow-up. RESULTS: Patients were divided into 4 groups based on number of risk factors present at the initial assessment: 0 (18.2%), 1 (24.2%), 2 (26.3%), and 3 (31.3%). The presence of 2 or 3 risk factors significantly predicted greater disability at follow-up compared to those with 0 risk factors (R = 0.311) and those with just 1 risk factor (Cohen's d values of -1.07 and -1.44, respectively). DISCUSSION: A simple approach to risk categorization can identify youth with FGIDs who are most likely to report increased levels of pain-related impairment over time. These findings have important clinical implications that support the utility of a brief screening process during medical care to inform referral for targeted treatment approaches to FGIDs.


Asunto(s)
Dolor Abdominal/diagnóstico , Evaluación de la Discapacidad , Enfermedades Gastrointestinales/complicaciones , Dimensión del Dolor , Índice de Severidad de la Enfermedad , Dolor Abdominal/etiología , Adolescente , Algoritmos , Ansiedad/diagnóstico , Ansiedad/etiología , Niño , Técnicas de Apoyo para la Decisión , Femenino , Estudios de Seguimiento , Enfermedades Gastrointestinales/diagnóstico , Humanos , Masculino , Pronóstico , Escalas de Valoración Psiquiátrica , Medición de Riesgo , Factores de Riesgo
6.
J Pediatr ; 169: 181-7.e1, 2016 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-26545727

RESUMEN

OBJECTIVES: To evaluate the utility of the 2010 American College of Rheumatology (ACR) adult fibromyalgia criteria for use in adolescents with juvenile fibromyalgia (JFM). STUDY DESIGN: Participants included 47 adolescent girls diagnosed with JFM (mean age = 15.3 years) and 48 age- and sex-matched adolescents (mean age = 15.0 years) with localized chronic pain (eg, headaches or abdominal pain). A trained examiner administered the Widespread Pain Index and Symptom Severity measures and also completed a manual tender point exam. Clinicians completed a form indicating the presence of active JFM per Yunus and Masi (1985) criteria, the only available and most commonly used measure for JFM. Criterion validity analysis was performed as well as t tests comparing symptoms between JFM and controls. RESULTS: With the Yunus and Masi criteria used as the gold standard, the 2010 ACR fibromyalgia criteria showed a sensitivity of 89.4% and specificity of 87.5%. CONCLUSION: The 2010 ACR measure appears to be a valuable tool for the identification of JFM. However, a slight modification to the 2010 ACR measure and inclusion of a clinical exam is recommended.


Asunto(s)
Fibromialgia/diagnóstico , Reumatología , Adolescente , Adulto , Factores de Edad , Femenino , Guías como Asunto , Humanos , Sociedades Médicas , Estados Unidos
7.
J Pediatr ; 171: 227-33, 2016 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-26879812

RESUMEN

OBJECTIVE: To evaluate whether clinical anxiety in children presenting to a pediatric pain management center is associated with a poorer treatment response for those who completed pain-focused cognitive behavioral therapy (CBT). STUDY DESIGN: The total sample consisted of 175 children, 40 of whom completed CBT for chronic pain. The Screen for Child Anxiety Related Emotional Disorders was completed at initial evaluation and outcome measures (average pain intensity and the Functional Disability Inventory) were collected during the initial evaluation and at the end of CBT. Group differences in outcomes were examined following CBT. The role of anxiety in CBT initiation and completion was also explored. RESULTS: Presence of clinical anxiety was associated with greater initiation and/or completion of pain-focused CBT but also a poorer treatment response. Specifically, the group with subclinical anxiety exhibited a substantial reduction in pain intensity, and the group with clinical anxiety exhibited a more limited response to treatment (F [1, 36] = 13.68 P < .01). A similar effect was observed for Functional Disability Inventory, such that the group with clinical anxiety had a significantly smaller response to treatment (F [1, 38] = 4.33 P < .05). The difference in pain and disability between groups following CBT suggest moderate effects (Cohen d = 0.77 and 0.78, respectively). CONCLUSIONS: Although youths with clinical anxiety are more likely to start and/or complete pain-focused CBT, anxiety has an adverse impact on CBT treatment response in children with chronic pain. Identification of patients with anxiety and use of tailored behavioral interventions may improve clinical outcomes.


Asunto(s)
Ansiedad/complicaciones , Ansiedad/tratamiento farmacológico , Dolor Crónico/psicología , Dolor Crónico/terapia , Terapia Cognitivo-Conductual/métodos , Adolescente , Cuidadores , Niño , Femenino , Hospitales Pediátricos , Humanos , Masculino , Medio Oeste de Estados Unidos , Dolor , Manejo del Dolor , Resultado del Tratamiento
8.
J Pediatr Gastroenterol Nutr ; 60(3): 312-7, 2015 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-25714575

RESUMEN

BACKGROUND: Functional abdominal pain (FAP) is associated with significant anxiety and impairment. Prior investigations of child anxiety in youth with FAP are generally limited by small sample sizes, based on child report, and use lengthy diagnostic tools. It is unknown whether a brief anxiety-screening tool is feasible, whether parent and child reports of anxiety are congruent, and whether parent and child agreement of child anxiety corresponds to increased impairment. The purpose of this investigation was to examine anxiety characteristics in youth with FAP using parent and child reports. Parent-child agreement of child anxiety symptoms was examined in relation to pain and disability. METHODS: One hundred patients with FAP (8-18 years of age) recruited from pediatric gastroenterology clinics completed measures of pain intensity (Numeric Rating Scale) and disability (Functional Disability Inventory). Patients and caregivers both completed a measure of child anxiety characteristics (Screen for Child Anxiety and Related Disorders). RESULTS: Clinically significant anxiety symptoms were more commonly reported by youth (54%) than their parents (30%). Panic/somatic symptoms, generalized anxiety, and separation anxiety were most commonly endorsed by patients, whereas generalized anxiety, separation anxiety, and school avoidance were most commonly reported by parents. The majority (65%) of parents and children agreed on the presence (26%) or absence (39%) of clinically significant anxiety. Parent-child agreement of clinically significant anxiety was related to increased impairment. CONCLUSIONS: A brief screening instrument of parent and child reports of anxiety can provide clinically relevant information for comprehensive treatment planning in children with FAP.


Asunto(s)
Dolor Abdominal/etiología , Ansiedad/diagnóstico , Enfermedades Gastrointestinales/etiología , Tracto Gastrointestinal/fisiopatología , Tamizaje Masivo/métodos , Adolescente , Ansiedad/fisiopatología , Niño , Estudios Transversales , Manual Diagnóstico y Estadístico de los Trastornos Mentales , Femenino , Enfermedades Gastrointestinales/epidemiología , Enfermedades Gastrointestinales/fisiopatología , Enfermedades Gastrointestinales/psicología , Hospitales Pediátricos , Hospitales Urbanos , Humanos , Masculino , Ohio/epidemiología , Servicio Ambulatorio en Hospital , Dimensión del Dolor , Padres , Escalas de Valoración Psiquiátrica , Riesgo , Autoinforme , Índice de Severidad de la Enfermedad
9.
BMC Med ; 12: 178, 2014 Oct 09.
Artículo en Inglés | MEDLINE | ID: mdl-25603875

RESUMEN

BACKGROUND: Inherited epidermolysis bullosa (EB) comprises a group of rare disorders that have multi-system effects and patients present with a number of both acute and chronic pain care needs. Effects on quality of life are substantial. Pain and itching are burdensome daily problems. Experience with, and knowledge of, the best pain and itch care for these patients is minimal. Evidence-based best care practice guidelines are needed to establish a base of knowledge and practice for practitioners of many disciplines to improve the quality of life for both adult and pediatric patients with EB. METHODS: The process was begun at the request of Dystrophic Epidermolysis Bullosa Research Association International (DEBRA International), an organization dedicated to improvement of care, research and dissemination of knowledge for EB patients worldwide. An international panel of experts in pain and palliative care who have extensive experience caring for patients with EB was assembled. Literature was reviewed and systematically evaluated. For areas of care without direct evidence, clinically relevant literature was assessed, and rounds of consensus building were conducted. The process involved a face-to-face consensus meeting that involved a family representative and methodologist, as well as the panel of clinical experts. During development, EB family input was obtained and the document was reviewed by a wide variety of experts representing several disciplines related to the care of patients with EB. RESULTS: The first evidence-based care guidelines for the care of pain in EB were produced. The guidelines are clinically relevant for care of patients of all subtypes and ages, and apply to practitioners of all disciplines involved in the care of patients with EB. When the evidence suggests that the diagnosis or treatment of painful conditions differs between adults and children, it will be so noted. CONCLUSIONS: Evidence-based care guidelines are a means of standardizing optimal care for EB patients, whose disease is often times horrific in its effects on quality of life, and whose care is resource-intensive and difficult. The guideline development process also highlighted areas for research in order to improve further the evidence base for future care.


Asunto(s)
Epidermólisis Ampollosa/terapia , Manejo del Dolor/normas , Cuidados Paliativos/normas , Adulto , Niño , Epidermólisis Ampollosa/complicaciones , Epidermólisis Ampollosa/psicología , Humanos , Medicina Integrativa/métodos , Medicina Integrativa/normas , Masculino , Dolor/etiología , Manejo del Dolor/métodos , Cuidados Paliativos/métodos , Psicoterapia/métodos , Psicoterapia/normas , Calidad de Vida
10.
J Pediatr Gastroenterol Nutr ; 59(6): 732-8, 2014 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-25121521

RESUMEN

OBJECTIVES: Functional abdominal pain (FAP) in youth is associated with substantial impairment in functioning, and prior research has shown that overprotective parent responses can heighten impairment. Little is known about how a range of parental behaviors (overprotection, minimizing, and/or encouragement) in response to their child's pain interact with child coping characteristics (eg, catastrophizing) to influence functioning in youth with FAP. In this study, it was hypothesized that the relation between parenting factors and child disability would be mediated by children's levels of maladaptive coping (ie, pain catastrophizing). METHODS: Seventy-five patients with FAP presenting to a pediatric pain clinic and their caregivers participated in the study. Youth completed measures of pain intensity (Numeric Rating Scale), pain catastrophizing (Pain Catastrophizing Scale), and disability (Functional Disability Inventory). Caregivers completed measures of parent pain catastrophizing (Pain Catastrophizing Scale), and parent responses to child pain behaviors (Adult Responses to Child Symptoms: Protection, Minimizing, and Encouragement/Monitoring subscales). RESULTS: Increased functional disability was significantly related to higher child pain intensity, increased child and parent pain catastrophizing, and higher levels of encouragement/monitoring and protection. Parent minimization was not related to disability. Child pain catastrophizing fully mediated the relation between parent encouragement/monitoring and disability and partially mediated the relation between parent protectiveness and disability. CONCLUSIONS: The impact of parenting behaviors in response to FAP on child disability is determined, in part, by the child's coping style. Findings highlight a more nuanced understanding of the parent-child interaction in determining pain-related disability levels, which should be taken into consideration in assessing and treating youth with FAP.


Asunto(s)
Dolor Abdominal/fisiopatología , Dolor Abdominal/psicología , Catastrofización/psicología , Evaluación de la Discapacidad , Padres/psicología , Adolescente , Niño , Femenino , Humanos , Masculino , Dimensión del Dolor , Relaciones Padres-Hijo , Responsabilidad Parental/psicología
11.
Arthritis Rheum ; 64(1): 297-305, 2012 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-22108765

RESUMEN

OBJECTIVE: Juvenile fibromyalgia syndrome (FMS) is a chronic musculoskeletal pain disorder in children and adolescents for which there are no evidence-based treatments. The objective of this multisite, single-blind, randomized clinical trial was to test whether cognitive-behavioral therapy (CBT) was superior to fibromyalgia (FM) education in reducing functional disability, pain, and symptoms of depression in juvenile FMS. METHODS: Participants were 114 adolescents (ages 11-18 years) with juvenile FMS. After receiving stable medications for 8 weeks, patients were randomized to either CBT or FM education and received 8 weekly individual sessions with a therapist and 2 booster sessions. Assessments were conducted at baseline, immediately following the 8-week treatment phase, and at 6-month followup. RESULTS: The majority of patients (87.7%) completed the trial per protocol. Intent-to-treat analyses showed that patients in both groups had significant reductions in functional disability, pain, and symptoms of depression at the end of the study, and CBT was significantly superior to FM education in reducing the primary outcome of functional disability (mean baseline to end-of-treatment difference between groups 5.39 [95% confidence interval 1.57, 9.22]). Reduction in symptoms of depression was clinically significant for both groups, with mean scores in the range of normal/nondepressed by the end of the study. Reduction in pain was not clinically significant for either group (<30% decrease in pain). There were no study-related adverse events. CONCLUSION: In this controlled trial, CBT was found to be a safe and effective treatment for reducing functional disability and symptoms of depression in adolescents with juvenile FMS.


Asunto(s)
Terapia Cognitivo-Conductual/métodos , Depresión/terapia , Fibromialgia/terapia , Adolescente , Niño , Dolor Crónico/complicaciones , Dolor Crónico/diagnóstico , Dolor Crónico/terapia , Depresión/complicaciones , Depresión/diagnóstico , Evaluación de la Discapacidad , Femenino , Fibromialgia/complicaciones , Fibromialgia/diagnóstico , Estado de Salud , Humanos , Masculino , Dimensión del Dolor , Umbral del Dolor , Palpación , Calidad de Vida , Resultado del Tratamiento
12.
J Pediatr Gastroenterol Nutr ; 56(5): 469-74, 2013 May.
Artículo en Inglés | MEDLINE | ID: mdl-23412539

RESUMEN

Functional abdominal pain (FAP) is a common pediatric disorder associated with impairment in functioning that may persist for the long term. Anxiety is common in youth with FAP, and may be an important factor in predicting youth who are at greatest risk for increased impairment because of pain symptoms. In this article, we examine the relation between anxiety and impairment in youth with FAP. Furthermore, we explore various biopsychosocial factors (eg, neurobiological substrates, coping strategies, social factors) that may be implicated in the relation among FAP, anxiety, and increased impairment. Finally, we propose physician guidelines for screening and treatment of youth with FAP and co-occurring anxiety. Youth with FAP and co-occurring anxiety may benefit from cognitive-behavioral therapy in the context of multidisciplinary care.


Asunto(s)
Dolor Abdominal/psicología , Trastornos de Ansiedad/complicaciones , Ansiedad/complicaciones , Dolor Abdominal/terapia , Ansiedad/terapia , Trastornos de Ansiedad/terapia , Terapia Cognitivo-Conductual , Humanos , Responsabilidad Parental/psicología , Guías de Práctica Clínica como Asunto
13.
Pain Manag Nurs ; 14(4): e244-e250, 2013 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-24315277

RESUMEN

Little is known regarding treatment choices of youth diagnosed with juvenile-onset fibromyalgia (JFM) as they move into young adulthood. Additionally, there is little empirical evidence to guide youth with FM into appropriate treatment options, leading to a variety of therapies used to manage FM symptoms. The purpose of this descriptive study was to examine all therapies used by individuals with JFM as they entered young adulthood and the perceived effectiveness of these treatments. As part of a larger follow-up study, participants completed a web-based survey of all current and past treatments received for FM symptoms 2 years after their initial presentation and diagnosis at a pediatric rheumatology clinic. One hundred ten out of 118 eligible patients participated in the follow-up assessment as young adults (mean age 18.97 years; 93.6% female). A majority of participants reported use of conventional medications (e.g., antidepressants, anticonvulsants) and nondrug therapies (e.g., psychotherapy). Currently and within the past 2 years, antidepressant medications were the most commonly used to manage FM. Complementary treatments were used less often, with massage being the most popular choice. Although currently used treatments were reported as being effective, past treatments, especially medications, were viewed as being more variably effective. This is a potential reason why young adults with JFM might try more complementary and alternative approaches to managing their symptoms. More controlled studies are needed to investigate the effectiveness of these complementary methods to assist treatment providers in giving evidence-based treatment recommendations.


Asunto(s)
Servicios de Salud del Adolescente , Dolor Crónico/terapia , Terapias Complementarias , Fibromialgia/terapia , Encuestas de Atención de la Salud , Adolescente , Edad de Inicio , Anticonvulsivantes/uso terapéutico , Antidepresivos/uso terapéutico , Dolor Crónico/tratamiento farmacológico , Dolor Crónico/psicología , Femenino , Fibromialgia/tratamiento farmacológico , Fibromialgia/psicología , Estudios de Seguimiento , Humanos , Masculino , Psicoterapia , Resultado del Tratamiento , Adulto Joven
14.
Arthritis Care Res (Hoboken) ; 75(8): 1795-1803, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-36537193

RESUMEN

OBJECTIVE: Juvenile fibromyalgia (JFM) is a complex chronic pain condition that remains poorly understood. The study aimed to expand the clinical characterization of JFM in a large representative sample of adolescents with JFM and identify psychological factors that predict pain interference. METHODS: Participants were 203 adolescents (ages 12-17 years) who completed baseline assessments for the multisite Fibromyalgia Integrative Training for Teens (FIT Teens) randomized control trial. Participants completed the Pain and Symptom Assessment Tool, which includes a Widespread Pain Index (WPI; 0-18 pain locations) and Symptom Severity checklist of associated somatic symptoms (SS; 0-12) based on the 2010 American College of Rheumatology criteria for fibromyalgia. Participants also completed self-report measures of pain intensity, functional impairment, and psychological functioning. RESULTS: Participants endorsed a median of 11 painful body sites (WPI score) and had a median SS score of 9. Fatigue and nonrestorative sleep were prominent features and rated as moderate to severe by 85% of participants. Additionally, neurologic, autonomic, gastroenterologic, and psychological symptoms were frequently endorsed. The WPI score was significantly correlated with pain intensity and catastrophizing, while SS scores were associated with pain intensity and all domains of physical and psychological functioning. Depressive symptoms, fatigue, and pain catastrophizing predicted severity of pain impairment. CONCLUSION: JFM is characterized by chronic widespread pain with fatigue, nonrestorative sleep, and other somatic symptoms. However, how diffusely pain is distributed appears less important to clinical outcomes and impairment than other somatic and psychological factors, highlighting the need for a broader approach to the assessment and treatment of JFM.


Asunto(s)
Dolor Crónico , Fibromialgia , Síntomas sin Explicación Médica , Humanos , Adolescente , Fibromialgia/diagnóstico , Fibromialgia/epidemiología , Fibromialgia/terapia , Dolor Crónico/diagnóstico , Dolor Crónico/terapia , Fatiga/complicaciones , Catastrofización/diagnóstico
15.
Contemp Clin Trials Commun ; 30: 101039, 2022 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-36467389

RESUMEN

Objective: To describe protocol adaptations to the Fibromyalgia Integrative Training for Teens (FIT Teens) randomized controlled trial in response to the COVID-19 pandemic. The overarching aims of the FIT Teens multi-site 3-arm comparative effectiveness trial are to assess whether a specialized neuromuscular exercise training intervention combined with cognitive-behavioral therapy (CBT) is superior to CBT alone or graded aerobic exercise alone. Design/methods: The trial was originally designed as an in-person, group-based treatment with assessments at baseline, mid- and post-treatment, and four follow-up time points. The original study design and methodology was maintained with specific modifications to screening, consenting, assessments, and group-based treatments to be delivered in remote (telehealth) format in response to COVID-19 restrictions. Results: Study enrollment was paused in March 2020 for five months to revise operations manuals, pilot remote treatment sessions for accuracy and fidelity, complete programming of REDCap assent/consent and assessment materials, train study staff for new procedures and obtain regulatory approvals. The trial was relaunched and has been successfully implemented in remote format since July 2020. Trial metrics thus far demonstrate a consistent rate of enrollment, strong attendance at remote treatment sessions, high retention rates and high treatment fidelity after protocol adaptations were implemented. Conclusions: Preliminary findings indicate that FIT Teens protocol adaptations from in-person to remote are feasible and allowed for sustained enrollment, retention, and treatment fidelity comparable to the in-person format. Methodologic and statistical considerations resulting from the adaptations are discussed as well as implications for interpretation of results upon completion of the trial.

16.
Contemp Clin Trials ; 103: 106321, 2021 04.
Artículo en Inglés | MEDLINE | ID: mdl-33618033

RESUMEN

OBJECTIVE: Juvenile-onset fibromyalgia (JFM) is a chronic debilitating pain condition that negatively impacts physical, social and academic functioning. Cognitive-behavioral therapy (CBT) is beneficial in reducing functional disability among adolescents with JFM but has only a modest impact on pain reduction and does not improve physical exercise participation. This randomized controlled trial (RCT) aims to test whether a novel intervention that combines CBT with specialized neuromuscular exercise training (the Fibromyalgia Integrative Training program for Teens "FIT Teens") is superior to CBT alone or a graded aerobic exercise (GAE) program. DESIGN/METHODS: This 3-arm multi-site RCT will examine the efficacy of the FIT Teens intervention in reducing functional disability (primary outcome) and pain intensity (secondary outcome), relative to CBT or GAE. All interventions are 8-weeks (16 sessions) in duration and are delivered in small groups of 4-6 adolescents with JFM. A total of 420 participants are anticipated to be enrolled across seven sites with approximately equal allocation to each treatment arm. Functional disability and average pain intensity in the past week will be assessed at baseline, post-treatment and at 3-, 6-, 9- and 12-month follow-up. The 3-month follow-up is the primary endpoint to evaluate treatment efficacy; longitudinal assessments will determine maintenance of treatment gains. Changes in coping, fear of movement, biomechanical changes and physical fitness will also be evaluated. CONCLUSIONS: This multi-site RCT is designed to evaluate whether the combined FIT Teens intervention will have significantly greater effects on disability and pain reduction than CBT or GAE alone for youth with JFM. Clinical trials.gov registration: NCT03268421.


Asunto(s)
Terapia Cognitivo-Conductual , Fibromialgia , Adaptación Psicológica , Adolescente , Terapia por Ejercicio , Fibromialgia/terapia , Humanos , Estudios Multicéntricos como Asunto , Ensayos Clínicos Controlados Aleatorios como Asunto , Resultado del Tratamiento
17.
Rheumatology (Oxford) ; 49(11): 2204-9, 2010 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-20688804

RESUMEN

OBJECTIVES: Currently, there are no prospective studies exploring the prognosis of patients with juvenile primary FM syndrome (JPFS) or their physical, emotional and social outcomes as they enter the early adult years. The primary objective of this study was to assess long-term outcomes of a paediatric sample of clinically referred JPFS patients and their matched healthy controls. METHODS: Participants were 48 youths (current mean age = 19 years) diagnosed with JPFS in childhood or adolescence and 43 healthy controls matched in age, gender and race. The average length of follow-up was 3.67 years (range 2-6 years). Participants completed online (web-based) self-report questionnaires about current pain and physical symptoms, health status, anxiety, depressive symptoms and current and past treatments. RESULTS: Results showed that 62.5% of participants in the JPFS group continued to experience widespread pain and 60.4% reported having all the cardinal features of FM syndrome (including widespread pain, poor sleep and fatigue) at follow-up. The JPFS group reported significantly lower scores on all measures of health status and physical functioning compared with healthy controls and significantly greater symptoms of anxiety and depression. CONCLUSION: The results of this controlled follow-up study demonstrate that symptoms of FM appear to be chronic in a majority of clinically referred JPFS patients and the associated physical and emotional impairment can also be persistent. Implications for treatment and the need for further prospective longitudinal studies are discussed.


Asunto(s)
Fibromialgia/fisiopatología , Trastornos del Humor/etiología , Dimensión del Dolor/psicología , Adolescente , Estudios de Casos y Controles , Femenino , Fibromialgia/complicaciones , Fibromialgia/psicología , Estudios de Seguimiento , Humanos , Relaciones Interpersonales , Masculino , Trastornos del Humor/psicología , Psicología del Adolescente , Autoimagen , Aislamiento Social/psicología , Síndrome , Adulto Joven
18.
J Pediatr Psychol ; 35(1): 32-41, 2010.
Artículo en Inglés | MEDLINE | ID: mdl-19270029

RESUMEN

OBJECTIVE: This article describes the application of quality improvement methodology to implement a measurement tool for the assessment of functional status in pediatric patients with chronic pain referred for behavioral intervention. METHODS: The Functional Disability Inventory (FDI), a validated instrument for assessment of pain-related disability, was chosen as the primary clinical outcome measure. Using improvement science methodology, PDSA (Plan-Do-Study-Act) cycles were run to evaluate: (a) regular FDI administration, (b) two administration methods, (c) regular patient feedback, and (d) documentation methods. RESULTS: Within 1 month, psychologists were administering the FDI at least 80% of the time to patients. A high level of reliability using two administration methods (92.8%) was demonstrated. The FDI was feasible to integrate into clinical practice. Modifications to electronic records further enhanced clinician reliability of documentation. CONCLUSIONS: Quality improvement methods are an innovative way to make process changes in pediatric psychology settings to dependably gather and document evidence-based patient outcomes.


Asunto(s)
Dimensión del Dolor/métodos , Dolor/diagnóstico , Gestión de la Calidad Total/métodos , Adolescente , Terapia Conductista , Niño , Enfermedad Crónica , Medicina Basada en la Evidencia , Femenino , Humanos , Masculino , Manejo del Dolor , Índice de Severidad de la Enfermedad
19.
J Pediatr Psychol ; 35(9): 996-1004, 2010 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-20360017

RESUMEN

OBJECTIVE: To describe school absences in adolescents with Juvenile Primary Fibromyalgia Syndrome (JPFS) and examine the relationship between school absenteeism, pain, psychiatric symptoms, and maternal pain history. METHODS: Adolescents with JPFS (N = 102; mean age 14.96 years) completed measures of pain and depressive symptoms, and completed a psychiatric interview. Parents provided information about the adolescents' school absences, type of schooling, and parental pain history. School attendance reports were obtained directly from schools. RESULTS: Over 12% of adolescents with JPFS were homeschooled. Those enrolled in regular school missed 2.9 days per month on average, with one-third of participants missing more than 3 days per month. Pain and maternal pain history were not related to school absenteeism. However, depressive symptoms were significantly associated with school absences. CONCLUSION: Many adolescents with JPFS experience difficulties with regular school attendance. Long-term risks associated with school absenteeism and the importance of addressing psychological factors are discussed.


Asunto(s)
Absentismo , Depresión/psicología , Fibromialgia/psicología , Dolor/psicología , Adolescente , Niño , Depresión/complicaciones , Femenino , Fibromialgia/complicaciones , Humanos , Masculino , Dolor/complicaciones , Dimensión del Dolor , Instituciones Académicas
20.
Pancreas ; 49(7): 887-890, 2020 08.
Artículo en Inglés | MEDLINE | ID: mdl-32675785

RESUMEN

Children with acute recurrent and chronic pancreatitis experience severe abdominal pain that may be intermittent or chronic. Pain is often debilitating, causing interference with academic, social, family, and extracurricular activities that are important to youth. Disruption of these routines and the unpredictability of pain flares place children with pancreatitis at increased risk for development of anxious or depressive symptoms. Pediatric psychologists trained in cognitive-behavioral treatment are well suited to intervene on functional disability and mood disturbance, as well as teach coping skills. In an era where there is movement away from opioids, nonpharmacological strategies have an important place for pain management. In fact, positive outcomes following for children with other recurrent abdominal pain syndromes have been reported for this evidence-based intervention. In addition to pain management, pediatric psychologists can address other co-occurring behavioral and emotional problems in children with pancreatitis, such as needle phobia and poor adherence to the prescribed medical regimen.


Asunto(s)
Dolor Abdominal/terapia , Dolor Crónico/terapia , Trastornos Mentales/prevención & control , Pancreatitis Crónica/terapia , Pancreatitis/terapia , Dolor Abdominal/psicología , Enfermedad Aguda , Adaptación Psicológica , Adolescente , Niño , Dolor Crónico/psicología , Humanos , Trastornos Mentales/psicología , Manejo del Dolor/métodos , Pancreatitis/psicología , Pancreatitis Crónica/psicología , Estrés Psicológico/psicología
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