Pain Experiences of Children and Adolescents With Osteogenesis Imperfecta

Nghiem, Tracy; Louli, Julie; Treherne, Stephanie; Anderson, Charlotte E; Tsimicalis, Argerie; Lalloo, Chitra; Stinson, Jennifer; Thorstad, Kelly

doi:10.1097/ajp.0000000000000395

Cited by 34 publications

(41 citation statements)

References 58 publications

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“…The studies were appraised by two independent reviewers using the Mixed Methods Appraisal Tool (MMAT) and the CAse REport (CARE) Checklist. Both tools have been previously used in OI reviews (Dahan‐Oliel et al, ; Nghiem et al, ). The MMAT was created for the appraisal stage of complex literature reviews (Hong et al, ).…”

Section: Methodsmentioning

confidence: 99%

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Clinical manifestations of osteogenesis imperfecta in adulthood: An integrative review of quantitative studies and case reports

Chougui

Addab

Palomo

et al. 2020

American J of Med Genetics Pt A

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Osteogenesis imperfecta (OI) is a rare genetic disorder of the bones caused by a mutation in Type I collagen genes. As adults with OI are aging, medical concerns secondary to OI may arise. This integrative review sought to review, appraise, and synthesize the clinical manifestations faced by adults with OI. Four electronic bibliographic databases were searched. Published quantitative, qualitative, and mixed‐methods studies, as well as case reports from 2000 to March 2019, addressing a clinical manifestation in adulthood, were reviewed. Eligible studies and case reports were subsequently appraised using the Mixed Methods Appraisal Tool and Case Report Checklist, respectively. Twenty quantitative studies and 88 case reports were included for review regardless of the varying methodological quality score. These studies collectively included 2,510 adults with different OI types. Several clinical manifestations were studied, and included: hearing loss, cardiac diseases, pregnancy complications, cerebrovascular manifestations, musculoskeletal manifestations, respiratory manifestations, vision impairment, and other clinical manifestations. Increased awareness may optimize prevention, treatment, and follow‐up. Opportunities to enhance the methodological quality of research including better design and methodology, multisite collaborations, and larger and diverse sampling will optimize the generalizability and transferability of findings.

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Section: Methodsmentioning

confidence: 99%

“…Checklist. Both tools have been previously used in OI reviews (Dahan-Oliel et al, 2016;Nghiem et al, 2017). The MMAT was created for the appraisal stage of complex literature reviews (Hong et al, 2018).…”

Section: Quality Appraisalmentioning

confidence: 99%

Clinical manifestations of osteogenesis imperfecta in adulthood: An integrative review of quantitative studies and case reports

Chougui

Addab

Palomo

et al. 2020

American J of Med Genetics Pt A

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“…A low to moderate quality was also reported in the literature on pain experiences of children with OI. 12 The study sample sizes of the quantitative studies were small, and of the 125 participants in which OI type was identified, 101 (81%) were of OI Type I. Of the seven case reports, five patients (71%) were of OI Type I.…”

Section: Quality Of Pain Researchmentioning

confidence: 98%

“…7 A recent integrative review consisting of 19 studies sought to describe the pain experiences in young individuals with OI. 12 Among children and adolescents with OI, acute and chronic pain is present and problematic. Most notably, chronic pain interferes with sleep, mobility, and participation in school and activities.…”

Section: Introductionmentioning

confidence: 99%

Pain experiences of adults with osteogenesis imperfecta: An integrative review

Nghiem

Chougui

Michalovic

et al. 2018

Canadian Journal of Pain

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Background: Pain is a common symptom of osteogenesis imperfecta (OI) among children and adolescents. However, little is currently known of the pain experiences of adults with OI. Aims: The aims of this study were to critically appraise the studies assessing OI pain, to synthesize the pain experiences of adults with OI, and to compare the adult OI pain experiences to childhood. Methods: An integrative review was conducted. Five electronic bibliographic databases were searched. Published quantitative, qualitative, and/or mixed-method studies assessing pain in adults with OI were screened, reviewed, and appraised. Descriptive statistics were used to calculate quality scores, summarize sample characteristics, and synthesize findings. Extracted pain data were analyzed using constant comparison and consolidated into meaningful themes. Results: From the 832 titles identified, 14 studies including seven case reports met the inclusion criteria. Study appraisal scores ranged from low to moderate using the Quality Assessment Tool and the Case Report Checklist. The majority of studies assessed pain as a secondary outcome (71.4%) using well-established tools (64.2%). Adults with OI experience pain of mild to moderate intensity, which may interfere with completion of daily activities. Two themes emerged from analysis of the data: mild chronic pain persists despite surgical, pharmacological, or nonpharmacological interventions and past fractures and structural deformities may trigger onset of chronic pain in adulthood. Conclusion: Limited attention has been given to exploring the pain experience of adults diagnosed with OI. Pain is a long-term symptom of OI requiring further in-depth investigation to better understand and manage pain in adults with OI. RÉSUMÉ Contexte: La douleur est un symptôme commun de l'ostéogenèse imparfaite (OI) chez les enfants et les adolescents. Toutefois, on sait actuellement peu de choses au sujet de la douleur ressentie par les adultes atteints d'OI. But: Effectuer une appréciation critique des études évaluant la douleur occasionnée par l'OI, faire la synthèse de l'information sur la douleur ressentie par les adultes atteints d'OI et comparer la douleur ressentie à l'âge adulte à celle ressentie pendant l'enfance. Méthodes: Un examen par intégration a été mené. Des recherches ont été effectuées dans cinq bases de données bibliographiques électroniques. Les études quantitatives, qualitatives ou mixtes publiées qui évaluaient la douleur chez les adultes atteints d'OI ont été sélectionnées, examinées et évaluées. Des statistiques descriptives ont été utilisées pour calculer leur score de qualité, résumer les caractéristiques de leur échantillon et synthétiser leurs conclusions. Les données sur la douleur qui avaient été extraites ont été analysées à l'aide de la méthode de la comparaison constante et regroupées en thèmes significatifs. Résultats: Parmi les 832 titres recensés, 14 études comprenant sept rapports de cas répondaient aux critères d'inclusion. Au moment de les évaluer, les études ont obtenu...

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“…7 Regardless of intensity, pain is present, complex in quality, and located in several sites in children and adolescents with OI. 8 Recommended by PedIMMPACT, 9 the Adolescent Pediatric Pain Tool (APPT) is a self-report, multidimensional measure of pain for use in children (8-12 years) and adolescents 13 years and older. 10 Several studies have established the validity and reliability of the APPT for use with children and adolescents who (1) are healthy 11,12 ; (2) have an acute (e.g., postsurgery) [11][12][13][14][15] condition; or (3) have a chronic conditions (e.g., cancer, sickle cell disease).…”

Section: Introductionmentioning

confidence: 99%

Validation of the Adolescent Pediatric Pain Tool for the Multidimensional Measurement of Pain in Children and Adolescents Diagnosed with Osteogenesis Imperfecta

Boitor

Gélinas

Rauch

et al. 2019

Canadian Journal of Pain

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Background: The Adolescent Pediatric Pain Tool (APPT) is a self-reported, multidimensional assessment of pain location, intensity, and quality in children and adolescents. Yet, it has not been validated for use in children and adolescents with osteogenesis imperfecta (OI). Aims: This study aimed to validate and evaluate the feasibility of the APPT for pain assessment in children and adolescents with OI. Methods: A prospective observational study was conducted at a university-affiliated pediatric hospital in Canada. Thirty-three children and adolescents with OI participated by completing the APPT pre-bisphosphonate intravenous infusion and 1 week post-bisphosphonate intravenous infusion. Main outcomes were internal consistency, convergent and discriminative validity, and feasibility. Results: The Kuder-Richardson test of internal consistency was 0.863, 0.661, and 0.729 for the Sensory, Affective, and Evaluative subscales, respectively. For the entire pain quality scale, the Cronbach's alpha was 0.835. Regarding convergent validity, a moderate correlation was observed between the ratings on the pain intensity scale and the Faces Pain Scale-Revised (Spearman's rho = 0.711). Patients for whom pain was a problem reported higher pain intensity (Mann Whitney U = 41.50, P = 0.032) and more pain quality descriptors (Mann Whitney U = 45.50, P = 0.020) and painful body areas (Mann-Whitney U = 25.50, P = 0.001) than those for whom it was not (Mann-Whitney U, P < 0.05). In terms of feasibility, completing the tool may require a considerable time commitment and assistance from a clinician or parent, especially if the patient is experiencing pain and provides detailed pain location and quality information by completing the APPT. Conclusions: This study suggests that the APPT is valid for the multidimensional assessment of pain in children and adolescents with OI, but feasibility needs to be enhanced. RÉSUMÉ Contexte: L'outil d'évaluation de la douleur des adolescents en pédiatrie (APPT) est une évaluation multidimensionnelle auto-déclarée de l'emplacement, de l'intensité et de la qualité de la douleur chez les enfants et les adolescents. Toutefois, l'utilisation de cet outil auprès des enfants et des adolescents souffrant d'ostéogénèse imparfaite n'a pas encore été validée. But: Cette étude avait pour but de valider et d'évaluer la faisabilité de l'APPT pour l'évaluation de la douleur dans cette population. Méthodes: Une étude observationnelle prospective a été menée dans un centre hospitalier universitaire à vocation pédiatrique au Canada. Trente-trois enfants et adolescents atteints d'ostéogénèse imparfaite ont participé à cette étude en répondant à l'APPT avant l'infusion intraveineuse de bisphosphonate et une semaine après celle-ci. Les principaux résultats étaient la cohérence interne, la validation convergente et discriminante, et la faisabilité. Résultats: Le résultat du test de Kuder-Richardson pour mesurer la cohérence interne était de 0,863 pour le sensoriel, 0,661 pour l'affectif et 0,729 pour les sous-échelles d'éva...

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Pain Experiences of Children and Adolescents With Osteogenesis Imperfecta

Cited by 34 publications

References 58 publications

Clinical manifestations of osteogenesis imperfecta in adulthood: An integrative review of quantitative studies and case reports

Clinical manifestations of osteogenesis imperfecta in adulthood: An integrative review of quantitative studies and case reports

Pain experiences of adults with osteogenesis imperfecta: An integrative review

Validation of the Adolescent Pediatric Pain Tool for the Multidimensional Measurement of Pain in Children and Adolescents Diagnosed with Osteogenesis Imperfecta

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