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1.
Am J Med Genet A ; 194(6): e63541, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38234177

RESUMO

Neurofibromatosis Type 1 (NF1) is an autosomal dominant genetic disorder that can cause an individual significant chronic pain (CP). CP affects quality of life and daily functioning, yet there are limited effective treatments for CP within NF1. The current study describes the impact of CP using the Neurofibromatosis Pain Module (NFPM). The NFPM is a self-reported clinical assessment that evaluates the impact of CP across multiple domains (e.g., interference, severity, tolerance, and symptomology) and three prioritized pain regions. A cross-sectional study (N = 242) asked adults with NF1 to describe and rate their pain using the NFPM. The results indicated that they reported moderate pain severity (M = 6.6, SD = 2.0) on a 0-10 scale, that 54% (n = 131) had been in pain at least 24 days in the last 30, for 75% (n = 181) sleep was affected, and 16% reported that nothing was effective in reducing their CP for their primary pain region. The current results extend previously published work on CP within adults with NF1 and indicate that more emphasis on understanding and ameliorating CP is required. The NFPM is a sensitive clinical measure that provides qualitative and quantitative responses to inform medical providers about changes in CP.


Assuntos
Dor Crônica , Neurofibromatose 1 , Medição da Dor , Qualidade de Vida , Humanos , Neurofibromatose 1/complicações , Neurofibromatose 1/genética , Feminino , Masculino , Dor Crônica/genética , Adulto , Pessoa de Meia-Idade , Estudos Transversais , Adolescente , Adulto Jovem , Idoso , Autorrelato , Inquéritos e Questionários
2.
J Pediatr Psychol ; 48(4): 341-351, 2023 04 20.
Artigo em Inglês | MEDLINE | ID: mdl-36892594

RESUMO

OBJECTIVES: Childhood chronic pain conditions are common and vulnerable to stigma. Adolescents with chronic primary pain experience diagnostic uncertainty and describe pain-related stigma experiences across multiple social contexts. Juvenile idiopathic arthritis (JIA) is a childhood autoimmune, inflammatory condition with associated chronic pain, but with well-defined diagnostic criteria. The current study examined pain-related stigma experiences in adolescents with JIA. METHODS: Four focus groups of 3-7 adolescents with JIA (N = 16), ages 12-17 (Mage = 15.42, SD = 1.82), and parents (N = 13) were conducted to examine experiences of, and reaction to, pain-related stigma. Patients were recruited from an outpatient pediatric rheumatology clinic. Focus group length ranged from 28 to 99 minutes long. Two coders used directed content analysis resulting in 82.17% inter-rater level of agreement. RESULTS: Adolescents with JIA described pain-related stigma experiences predominantly from school teachers and peers, and less from medical providers (e.g., school nurses), and family members after a diagnosis. The primary categories that emerged were (1) Felt Stigma, (2) Internalized Stigma, (3) Anticipatory Stigma/Concealment, and (4) Contributions to Pain-Related Stigma. A common experience of pain-related stigma was the perception by others that the adolescent was too young to have arthritis. CONCLUSIONS: In common with adolescents with unexplained chronic pain, our findings indicate that adolescents with JIA experience pain-related stigma in certain social contexts. Diagnostic certainty may contribute to greater support among medical providers and within families. Future research should investigate the impact of pain-related stigma across childhood pain conditions.


Assuntos
Artrite Juvenil , Dor Crônica , Criança , Humanos , Adolescente , Dor Crônica/diagnóstico , Qualidade de Vida , Artrite Juvenil/diagnóstico , Emoções , Grupos Focais
3.
J Pediatr Psychol ; 47(4): 456-468, 2022 04 08.
Artigo em Inglês | MEDLINE | ID: mdl-34871426

RESUMO

OBJECTIVE: Adolescents with chronic pain often experience symptom disbelief and social rejection by others secondary to "medically unexplained" symptoms. Although chronic pain is common in adolescents, limited research has conceptualized these social experiences as pain-related stigma in this population. The purpose of this study was to identify and describe pain-related stigma among adolescents with chronic pain and their parents using focus group methodology. METHODS: Five adolescent focus groups (N = 18; Age M = 15.33 years, SD = 1.28) and three parent focus groups (N = 9) were conducted. Directed content analysis was used to analyze focus group transcripts. Stigma categories were developed a priori (Felt Stigma, Anticipated Stigma, Internalized Stigma, Concealment, and Controllability) and new categories emerged during analysis. Two coders reached 87.16% agreement for all groups (adolescent group: 90.34%; Parent group: 79.55%) and consensus was achieved for discordant codes. RESULTS: Adolescents and their parents endorsed pain-related stigma across all social domains. Analyses revealed four main categories for both groups (a) Felt Stigma (subcategories: pain dismissal, faking or exaggerating, and mental health stigma), (b) Anticipated Stigma and Concealment, (c) Internalized Stigma, and (d) Sources of Pain-Related Stigma (subcategories: pain invisibility, lack of chronic pain knowledge, lack of understanding, and controllability). CONCLUSIONS: Adolescents with chronic pain experience pain-related stigma from medical providers, school personnel, family members, and peers, which may have negative social and health implications. More research is needed to evaluate the link between pain-related stigma and health outcomes for adolescents with chronic pain. Clinical approaches targeting pain-related stigma are discussed.


Assuntos
Dor Crônica , Adolescente , Família , Grupos Focais , Humanos , Pais/psicologia , Estigma Social
4.
Pain Med ; 23(8): 1379-1386, 2022 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-35166851

RESUMO

OBJECTIVES: Sickle Cell Disease (SCD) is a genetic blood disorder affecting over 1 million people globally. The aim of this analysis is to explore the pain burden of patients with SCD in two countries: the United States and Ghana. METHODS: The Consortium for the Advancement of Sickle Cell Research (CASiRe) was created to better understand the clinical severity of patients with SCD worldwide. Data regarding gender, SCD genotype, prior medical diagnoses, and validated pain burden measures were analyzed from the CASiRe database. The Sickle Cell Pain Burden Interview (SCPBI) was used to assess pain burden, the impact of pain on physical, emotional, and social function. RESULTS: Most subjects identified as Black/African American (n = 298, 97.0%). Patient ages ranged from 6 to 73 years. 35.9% resided in the United States, 64.1% resided in Ghana, 40.9% were men, and 58.7% were women. The mean SCPBI score for US SCD patients was 6.53(±5.89) vs 4.04(±5.10) for Ghanaian patients, P <0.001. Pain burden was higher in US men vs Ghanaian men (6.74(±5.68) vs 3.54(±4.46), P = .003) and in US women vs Ghanaian women (6.37 ± 6.06 vs 4.44(±5.54), P = .032). Pain burden was higher in US patients than Ghanaian patients for both the Hb SC/SBeta+ genotype (5.40(±5.29) vs 2.82(±4.86), P = .054) and Hb SS/SBeta0 genotype (6.79(±6.01) vs 4.49(±5.13), P = .003). Pain burden was significantly higher in SCD patients with comorbid conditions independent of geographic origin including stroke, cholecystectomy, gallstones, depression, and headache. DISCUSSION: US patients with SCD have a higher pain burden than Ghanaian patients. Further studies should investigate underlying contributors to pain burden in these populations and further explore the etiology of geographic differences in pain.


Assuntos
Anemia Falciforme , Acidente Vascular Cerebral , Adolescente , Adulto , Idoso , Anemia Falciforme/complicações , Anemia Falciforme/epidemiologia , Criança , Estudos de Coortes , Feminino , Gana/epidemiologia , Humanos , Masculino , Pessoa de Meia-Idade , Dor/epidemiologia , Dor/etiologia , Acidente Vascular Cerebral/complicações , Estados Unidos/epidemiologia , Adulto Jovem
6.
J Pediatr Hematol Oncol ; 40(2): 122-127, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-29176462

RESUMO

Pain is a clinical hallmark of sickle cell disease (SCD), and is rarely optimally managed. Cognitive-behavioral therapy (CBT) for pain has been effectively delivered through the Internet in other pediatric populations. We tested feasibility and acceptability of an Internet-delivered CBT intervention in 25 adolescents with SCD (64% female, mean age=14.8 y) and their parents randomized to Internet CBT (n=15) or Internet Pain Education (n=10). Participants completed pretreatment/posttreatment measures. Eight dyads completed semistructured interviews to evaluate treatment acceptability. Feasibility indicators included recruitment and participation rates, engagement and adherence to intervention, and completion of outcome measures. In total, 87 referrals were received from 9 study sites; our recruitment rate was 60% from those families approached for screening. Among participants, high levels of initial intervention engagement (>90%), and adherence (>70%) were demonstrated. Most participants completed posttreatment outcome and diary measures (>75%). Retention at posttreatment was 80%. High treatment acceptability was reported in interviews. Our findings suggest that Internet-delivered CBT for SCD pain is feasible and acceptable to adolescents with SCD and their parents. Engagement and adherence were good. Next steps are to modify recruitment plans to enhance enrollment and determine efficacy of Internet CBT for SCD pain in a large multisite randomized controlled trial.


Assuntos
Anemia Falciforme/complicações , Dor Crônica/terapia , Terapia Cognitivo-Comportamental/métodos , Internet , Manejo da Dor/métodos , Adolescente , Criança , Dor Crônica/etiologia , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pais , Projetos Piloto
7.
J Pediatr Psychol ; 43(7): 779-788, 2018 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-29562253

RESUMO

Objectives: Sickle cell disease (SCD) predominately affects Black Americans. This is the first study of its kind to describe the racial bias experiences of youth with SCD and their reactions to these experiences. Methods: Participants were 20 youth with SCD (ages 13-21 years) who were asked to describe any racial bias events they experienced, as recorded on the Perception of Racism in Children and Youth measure (PRaCY). Interviews were recorded, transcribed, and analyzed by two independent raters using a conventional content analysis approach. Results: All participants reported at least one incident of racial bias. Content analysis of racial bias events (n = 104) yielded 4 categories and 12 subcategories as follows: Perpetrator (Peers, Authority Figures, and General Public), Type of Racial Bias (Explicit, Implicit), Behavioral Reaction (Approach, Avoidant), and Emotional Response (Dysphoria, Anger, Unconcerned, Inferior, Anxious). Discussion: This study provides a description of racial bias experiences within community and medical settings and highlights the need for further evaluation of the impact of racial bias among youth with SCD.


Assuntos
Anemia Falciforme/psicologia , Negro ou Afro-Americano/psicologia , Racismo/psicologia , Adolescente , Adulto , Negro ou Afro-Americano/estatística & dados numéricos , Atitude Frente a Saúde , Feminino , Humanos , Entrevistas como Assunto , Masculino , New England , Racismo/estatística & dados numéricos , População Urbana , Adulto Jovem
8.
Child Obes ; 20(2): 87-95, 2024 03.
Artigo em Inglês | MEDLINE | ID: mdl-36877538

RESUMO

Background: Pediatric obesity is a growing concern in the United States and has been linked to negative psychological health outcomes such as depression, anxiety, and decreased quality of life. Obesity is a complex disease that is influenced by several environmental and social factors that are often out of an individuals' control. The etiology of pain in youth with obesity is not well understood. There are likely many factors that overlap and influence each other, including those related to functional limitation, sleep quality, and psychological health that exacerbate symptoms as a whole. Methods: This study examined the relationship between obesity level (BMI z-score) and youth self reports of: pain, functional limitation, sleep quality, depressive symptoms, and health-related quality of life (HRQoL). Ninety-eight patients completed validated surveys of pain, pain burden, functional disability, sleep, depression, and HRQoL as standard of care during their initial visit in Weight Management Program at Connecticut Children's Medical Center. Indirect effects of pain measures (pain scores and pain burden) on HRQoL through functional limitation, sleep quality, and depressive symptoms, respectively, were tested using bootstrapping according to Hayes.34 Results: Significant indirect effects and full mediation for both models were found. Conclusions: This study uniquely contributes to existing research through the discovery of the serial mediating effects of these variables in the relationship between youth pain and HRQoL. Although these variables have been studied independently as influential in this relationship in past research, this is the first study to examine how they interact through serial mediation models.


Assuntos
Depressão , Obesidade Infantil , Criança , Humanos , Adolescente , Depressão/epidemiologia , Qualidade de Vida , Obesidade Infantil/complicações , Obesidade Infantil/epidemiologia , Sono , Dor
9.
Pain Res Manag ; 18(1): 33-8, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-23457684

RESUMO

BACKGROUND: Youth with sickle cell disease (SCD) are commonly hospitalized for treatment of painful vaso-occlusive episodes (VOE). However, limited data are available concerning the course of hospitalization for these children and adolescents and, in particular, whether daily changes occur in pain, emotional status and physical function. OBJECTIVES: To characterize changes in daily pain intensity, physical function and mood over the course of hospitalization, and to determine whether specific clinical characteristics were associated with these changes. METHODS: Daily ratings of pain (0 to 10 numerical rating scale) and mood (Positive and Negative Affect Scale for Children) were completed by 25 youth (11 to 20 years of age) with SCD over a total of 152 days (mean [± SD] = 6.7±5.6 days) of hospitalization. Trained raters determined each youth's daily physical function. RESULTS: Linear mixed modelling was used to examine changes in pain, mood and physical function during hospital stay. The rate of change over the course of hospitalization was significant for reductions in pain intensity (P<0.001) and improvements in physical (motor) function (P=0.001). Positive affect over time was significantly associated with subjects' physical function scores (B 0.24 [95% CI 0.12 to 0.35]) but not with their pain scores. In contrast, negative affect was positively associated with pain and inversely associated with physical function scores (B 1.58 [95% CI 0.23 to 2.93]). CONCLUSIONS: The results of the present study demonstrated that children made daily improvements in physical function and pain over hospitalization for VOE. Mood was related to changes in pain and physical recovery. Assessment of physical function and mood during hospitalization may help guide strategies to better understand the pain experience in youth with SCD hospitalized with VOE.


Assuntos
Afeto , Anemia Falciforme/complicações , Anemia Falciforme/psicologia , Atividade Motora , Dor/epidemiologia , Adolescente , Criança , Feminino , Hospitalização , Humanos , Pacientes Internados/psicologia , Masculino , Atividade Motora/fisiologia , Dor/etiologia , Recuperação de Função Fisiológica , Adulto Jovem
10.
Cancers (Basel) ; 15(12)2023 Jun 16.
Artigo em Inglês | MEDLINE | ID: mdl-37370823

RESUMO

INTRODUCTION: Neurofibromatosis Type 1 (NF1) is an autosomal dominant genetic condition in which chronic pain is a predominant issue. Given the rarity of the disease, there are limited psychosocial treatments for individuals with NF1 suffering with chronic pain. Using mobile applications can facilitate psychosocial treatments; however, there are consistent issues with engagement. Utilizing a mixed methodology, the current study evaluated the customized iCanCope mobile application for NF1 on increasing engagement through the usage of contingency management. METHODS: A mixed methods study from a subset of data coming from a randomized clinical trial that occurred from January 2021 to August 2022 was undertaken. Two groups (iCC and iCC + CM) were exposed to the customized iCanCope mobile application in which engagement data were captured in real-time with daily check-ins for interference, sleep, mood, physical activity, energy levels, goal setting, and accessing article content (coping strategies). Additionally, semi-structured interviews were conducted to gain insight into the participants' experience at the end of the trial. RESULTS: Adults (N = 72) were recruited via NF patient advocacy groups. Significant differences were noted between the groups in total articles read (p = 0.002), goals achieved (p = 0.017), and goals created (p = 008). Additionally, there were significant differences observed between user-generated goals and those that were app recommended (p < 0.001). Both groups qualitatively reported positive feedback on the customized mobile application, indicating that continued usage and engagement of the mobile application were acceptable. CONCLUSIONS: Employing customized mobile applications for adults with NF1 along with contingency management can leverage self-managed pain treatments while providing auxiliary resources to this population.

11.
J Pain ; 24(3): 387-402, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36243317

RESUMO

Needle procedures are among the most common causes of pain and distress for individuals seeking health care. While needle pain is especially problematic for children needle pain and associated fear also has significant impact on adults and can lead to avoidance of appropriate medical care. Currently there is not a standard definition of needle pain. A taxonomy, or classification system, for acute needle pain would aid research efforts and enhance clinical care. To meet this need, the Analgesic, Anesthetic, and Addiction Clinical Trial Translations, Innovations, Opportunities, and Networks public-private partnership with the U.S. Food and Drug Administration, the American Pain Society, and the American Academy of Pain Medicine formed the Analgesic, Anesthetic, and Addiction Clinical Trial Translations, Innovations, Opportunities, and Networks-American Pain Society-American Academy of Pain Medicine Pain Taxonomy initiative. One of the goals of this initiative was to develop taxonomies for acute pain disorders, including needle pain. To accomplish this, a working group of experts in needle pain was convened. Based on available literature and expert opinion, the working group used a 5-dimenional structure (diagnostic criteria, common features, modulating factors, impact and/or functional consequences, and putative mechanisms) to develop an acute pain taxonomy that is specific needle pain. As part of this, a set of 4 diagnostic criteria, with 2 modifiers to account for the influence of needle associated fear, are proposed to define the types of acute needle pain. PERSPECTIVE: This article presents a taxonomy for acute needle pain. This taxonomy could help to standardize definitions of acute pain in clinical studies of patients undergoing needle procedures.


Assuntos
Dor Aguda , Anestésicos , Dor Crônica , Criança , Humanos , Dor Aguda/diagnóstico , Analgésicos , Dor Crônica/diagnóstico , Medição da Dor/métodos , Sociedades Médicas , Estados Unidos
12.
Health Equity ; 6(1): 862-872, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36479187

RESUMO

Objective: The aim of this study was to describe a systematic approach to developing virtual patient (VP) vignettes for health equity research in pediatric pain care. Methods: VPs were initially developed to depict the body posture and movements of actual children experiencing pain. Researchers and clinicians with expertise in pediatric pain worked closely with a professional animator to portray empirically supported pain expression in four, full-motion, virtual male characters of two races (i.e., White and Black). Through an iterative process, VPs were refined to (1) appear realistic in a clinical setting and (2) display archetypal pain behavior and expression during a 1-min video clip without sound. Text vignettes were developed with consultation from experts in pain care and presented alongside VPs to assess clinical decision-making. VP vignettes were piloted in a sample of pediatric providers (N=13). Results: Informed by the literature and expertise of stakeholders, several revisions were made to improve VPs' facial grimacing and realism before piloting. VPs appeared to accurately capture important aspects of pain expression and behavior common among pediatric patients with pain disorders. Additional refinements to the text vignettes were made based on provider feedback to improve clarity and clinical relevance. Conclusions: This article presents a working framework to facilitate a systematic approach to developing VP vignettes. This framework is a first step toward advancing health equity research by isolating psychosocial and interpersonal factors affecting provider behavior and decision-making. Future research is needed to validate the use of VP vignettes for assessing provider behavior contributing to health inequities for youth with pain disorders.

13.
Contemp Clin Trials Commun ; 25: 100883, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-35036627

RESUMO

Neurofibromatosis Type 1 (NF1) is a genetic disorder presenting with chronic pain symptoms that has limited treatment options for addressing the pain. The utilization of a mobile application allows for greater reach and scalability when using empirically valid psychosocial self-management treatments for pain. The iCanCope mobile application has been utilized in several different populations dealing with pain symptoms and has demonstrated initial effectiveness. To address the need for this population, we have customized the iCanCope mobile application for the NF1 population and included additional tailored features. We describe the rationale and design of a pilot randomized control study with a sample of 108 adults with NF1, in which two groups will receive access to the mobile application, of which one group will be incentivized to engage in the mobile application and the third group will treatment as usual over the course of 8-week period with a six-week follow-up. Outcomes will focus on the acceptability of the iCanCope-NF mobile application within the NF1 population and the impact of pain related activity on psychometric evaluations to determine if the contingency management will impact the engagement of mobile application, as well as to identify the participants' experiences in relationship to their treatment satisfaction and perceived support.

14.
BMJ Open ; 12(7): e056692, 2022 07 15.
Artigo em Inglês | MEDLINE | ID: mdl-35840301

RESUMO

OBJECTIVE: Neurofibromatosis type 1 (NF1) is a genetic disorder in which chronic pain commonly occurs. The study sought to understand the needs of individuals with NF1 and pain management experts when adapting a pain self-management mobile health application (app) for individuals with NF1. DESIGN: We conducted a series of online, audio-recorded focus groups that were then thematically analysed. SETTING: Online focus groups with adults currently residing in the USA. PARTICIPANTS: Two types of participants were included: individuals with NF1 (n=32 across six focus groups) and pain management experts (n=10 across three focus groups). RESULTS: Six themes across two levels were identified. The individual level included lifestyle, reasons for using the mobile app and concerns regarding its use. The app level included desired content, desired features and format considerations. Findings included recommendations to grant free access to the app and include a community support feature for individuals to relate and validate one another's experience with pain from NF1. In addition, participants noted the importance of providing clear instructions on navigating the app, the use of an upbeat, hopeful tone and appropriate visuals. CONCLUSIONS: Both participant groups endorsed the use of iCanCope (iCC) as an NF1 pain self-management mobile app. Differences between groups were noted, however. The NF1 group appeared interested in detailed and nuanced pain tracking capabilities; the expert group prioritised tracking information such as mood, nutrition and activity to identify potential associations with pain. In tailoring the existing iCC app for individuals with NF1, attention should be paid to creating a community support group feature and to tailoring content, features and format to potential users' specific needs.


Assuntos
Dor Crônica , Aplicativos Móveis , Neurofibromatose 1 , Autogestão , Adulto , Dor Crônica/etiologia , Dor Crônica/terapia , Grupos Focais , Humanos , Neurofibromatose 1/complicações , Neurofibromatose 1/terapia , Manejo da Dor , Autogestão/métodos
15.
Pediatr Emerg Care ; 27(1): 27-8, 2011 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-21178811

RESUMO

OBJECTIVES: We sought to evaluate the relationship between pain scores and time to analgesic administration in 2 patient groups: those with sickle cell disease (SCD) and those with long-bone fractures (LBFs). METHODS: Patients between the ages of 3 and 21 years who presented to a pediatric emergency department (ED) with a vaso-occlusive episode secondary to SCD or an isolated LBF during 2005 were included. A retrospective chart review was conducted for each visit. Data collected included demographics, visual analog scale (VAS) pain scores, and time analgesic intervention. In 2005, all patients with SCD received analgesic management according to protocol. RESULTS: Seventy-seven patients with SCD had 152 visits to the ED for pain, whereas 219 patients had 221 visits for isolated LBF. In the long-bone-fracture group, for every 1-point increase in the VAS score, time to analgesic administration decreased by 5.6 minutes (P = 0.003), whereas in the SCD group, there was no relationship between VAS score and time to analgesic administration (P = 0.69). CONCLUSIONS: Our data suggest that pain scores are not used in the initial decision-making process in those patients with SCD presenting to the ED; however, they are utilized for patients presenting with another painful condition.


Assuntos
Anemia Falciforme/complicações , Medição da Dor/métodos , Dor/diagnóstico , Adolescente , Anemia Falciforme/diagnóstico , Criança , Pré-Escolar , Serviço Hospitalar de Emergência , Feminino , Humanos , Masculino , Dor/etiologia , Estudos Retrospectivos , Índice de Gravidade de Doença , Adulto Jovem
16.
Clin J Pain ; 37(11): 820-824, 2021 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-34419973

RESUMO

OBJECTIVE: To determine the preliminary reliability and validity of the Pain Burden Inventory-Youth (PBI-Y), a 7-item measure of the impact of chronic pain in adolescents with chronic pain that was, initially validated in youth with sickle cell disease. MATERIALS AND METHODS: A retrospective chart review of 130 patients presenting to an interdisciplinary pain clinic were examined with 98 (mean age=14.49; 66% female) comprising the final sample. Demographic information as well as adolescent and parent self-reported measures were examined. RESULTS: Youth reported a variety of pains including abdominal pain, headaches, back pain, and amplified musculoskeletal pain. The PBI-Y demonstrated strong internal reliability (α=0.792) and strong cross-informant concordance (r=0.822; P=0.000). Good construct validity was seen where higher scores on the PBI-Y were correlated with higher scores of (1) functional disability (r=0.689; P=0.000), (2) pain catastrophizing (r=0.494; P=0.000), (3) pain frequency days (r=0.526; P=0.000), (4) usual pain intensity (r=0.467; P=0.000), and (5) the worst pain intensity (r=0.485; P=0.000). Similar results were seen with caregiver assessments. Neither caregiver nor youth reports differed based on the sex or age of the child. DISCUSSION: The results support the psychometric properties of a brief self-report measure of pain impact in a pediatric chronic pain population. This measure may have great utility for clinicians caring for youth with chronic pain.


Assuntos
Dor Crônica , Adolescente , Criança , Feminino , Humanos , Masculino , Psicometria , Reprodutibilidade dos Testes , Estudos Retrospectivos , Inquéritos e Questionários
17.
Pediatrics ; 148(4)2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-34561268

RESUMO

Chronic pain in youth with gender dysphoria (GD) is poorly understood. The aim of our study was to review the clinical presentation of 8 youth with GD in a multidisciplinary chronic pain clinic. A single center retrospective chart review was conducted to obtain information on demographics, clinical care, previous diagnoses, and validated clinical measures. We present the trajectory of pain in this population with treatment of GD. Recognition and treatment of GD in youth with pain may improve pain outcomes.


Assuntos
Dor Crônica/etiologia , Disforia de Gênero/complicações , Adolescente , Criança , Feminino , Disforia de Gênero/terapia , Cefaleia/etiologia , Humanos , Masculino , Estudos Retrospectivos , Espondilólise/complicações , Pessoas Transgênero
18.
Front Psychol ; 12: 666275, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34149560

RESUMO

OBJECTIVE: Despite considerable evidence of chronic pain in adolescents, and its adverse consequences for their health and well-being, less is known about pain-related stigma that these youth face, such as pain disbelief by others. Adolescents with chronic pain may conceal their symptoms as a coping strategy to avoid pain-related stigma, contributing to further social isolation and disruptions in medical treatment. In the current study, we used focus group methodology to examine adolescent motivations for using concealment and the possible benefits and harmful consequences of this form of coping. MATERIALS AND METHODS: Five focus groups of 3-5 adolescents (ages 12-17) with chronic pain conditions (N = 18) were conducted as a part of a larger study to evaluate the impact of, and reaction to, pain-related stigma. Patients were recruited from an outpatient pediatric pain management clinic. Transcripts of focus group sessions were analyzed using directed content analysis for the main study, yielding anticipatory stigma and concealment categories. These categories were then explored using inductive content analysis for the current study. RESULTS: Adolescents described engaging in concealment of their pain symptoms. Our analysis revealed three social motivations for concealment: (1) avoidance of judgment; (2) avoidance of being a social burden; and (3) desire to be treated normally, and two harmful consequences of concealment: (1) social isolation and (2) cognitive burden. CONCLUSION: Disbelief of pain symptoms may exacerbate the social isolation and disease-related burden in this population. Clinical implications of concealing pain symptoms are discussed, and points of intervention are proposed.

19.
Clin J Pain ; 38(2): 88-94, 2021 11 22.
Artigo em Inglês | MEDLINE | ID: mdl-34803155

RESUMO

OBJECTIVES: The aim was to describe the impact of the opioid epidemic on pain management practices in pediatric sickle cell disease (SCD) and propose a conceptual framework for navigating ethical decision-making in pediatric sickle cell pain management. METHODS: A review of the literature on ethical challenges in the management of sickle cell pain was conducted and considered in the context of the opioid epidemic and psychosocial factors affecting youth with SCD. The Integrated Ethical Framework for Pain Management (IEFPM) was applied to pediatric sickle cell pain management using a clinical case example. RESULTS: Implicit bias, health-related stigma, and potential neurocognitive impairment all present unique challenges in ethical decision-making for youth with SCD. National guidelines for prescribing opioid medication may complicate providers' clinical decision-making and affect their sickle cell pain management practices. The IEFPM was found to be applicable to ethical decision-making for pediatric sickle cell pain and captures both patient-related and provider-related aspects of clinical pain management. DISCUSSION: The opioid epidemic has exacerbated existing ethical challenges for pain management among youth with SCD. The IEFPM provides a conceptual model that can be integrated into health care settings to facilitate ethical decision-making and promote greater health equity in the clinical management of pediatric sickle cell pain.


Assuntos
Analgésicos Opioides , Anemia Falciforme , Adolescente , Analgésicos Opioides/uso terapêutico , Anemia Falciforme/complicações , Anemia Falciforme/tratamento farmacológico , Criança , Humanos , Epidemia de Opioides , Dor/tratamento farmacológico , Dor/epidemiologia , Manejo da Dor
20.
J Emerg Med ; 39(5): 691-5, 2010 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-19703740

RESUMO

BACKGROUND: There may be disparities in pain management practice in the emergency department (ED) for sickle cell disease patients (SCD) with vaso-occlusive episodes (VOE). OBJECTIVES: To compare pain management practice for children who presented to the ED with VOE to those with isolated long bone fractures (LBF). METHODS: Children who presented with a VOE or a LBF to a children's hospital ED during 2005 were included. A retrospective medical chart review was conducted for each patient visit. Data collected included demographics, pain scores, time from triage to analgesia, and analgesic intervention. RESULTS: Seventy-seven patients with SCD had 152 visits to the ED for pain, and 219 patients had 221 visits for LBF. Fifty-five patients (108 visits) with SCD and 123 patients (124 visits) with LBF received opiates. Subsequent analysis was done on these groups. Patients with SCD were older, less likely to be male and more likely to be African-American than the LBF group. Patients with SCD had higher triage pain scores (7.7 ± 2.5 vs. 6.7 ± 3.0, p = 0.005) and spent less time in the waiting room (7.4 ± 9.0 vs. 12.1 ± 26.8 min, p = 0.10), were given higher initial opiate doses (0.09 ± 0.03 vs. 0.07 ± 0.03 mg/kg morphine, p < 0.001); however, time from triage to analgesic intervention did not differ (69.0 ± 42.6 vs. 70.4 ± 57.1 min, p = 0.92). CONCLUSIONS: No disparities in care for children with sickle cell pain were identified. More timely administration of opiates needs to be encouraged, assuming other factors such as time of day, ED census, and acuity permit.


Assuntos
Anemia Falciforme/complicações , Serviço Hospitalar de Emergência/organização & administração , Disparidades em Assistência à Saúde , Manejo da Dor , Adolescente , Analgésicos Opioides/uso terapêutico , Criança , Pré-Escolar , Connecticut , Feminino , Disparidades em Assistência à Saúde/estatística & dados numéricos , Hospitais Urbanos , Humanos , Masculino , Dor/tratamento farmacológico , Medição da Dor , Triagem , Listas de Espera , Adulto Jovem
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