Validation of the Oswestry Disability Index for pain and disability in arthrogryposis multiplex congenita

et al. 2019

Self Cite

Clinical interventions and research have mostly focused on the orthopedic and genetic outcomes of individuals with arthrogryposis multiplex congenita (AMC), and although pain has gained recognition as an important issue experienced by individuals with AMC, it has received little attention within the AMC literature. The aims of this scoping review were to describe the pain experiences of children and adults with AMC, to identify pain assessment tools and management techniques, and document the impact of pain on participation in everyday activities among children and adults with AMC. A search of the literature was conducted in four search engines and identified a total of 89 articles. Once study eligibility was reviewed, 21 studies met the selection criteria and were included in this review. Pain appears to be more commonly experienced in adults with AMC compared with children with AMC, with individuals having undergone multiple corrective procedures self-reporting pain more often. In adult populations, musculoskeletal chronic pain is a significant problem, resulting in restrictions in activities of daily living, mobility, and participation. Researchers and clinicians must agree on the use of validated measures appropriate for evaluating pain in AMC and the use of appropriate pain management techniques to relieve pain. Pediatric studies should focus on determining how commonly pain is experienced in infants, children, and adolescents with AMC. Pain in adults with AMC should be acknowledged to offer proper client-centered interventions throughout the lifespan. K E Y W O R D S adult, arthrogryposis multiplex congenita, child, pain, participation

Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Pain among children and adults living with arthrogryposis multiplex congenita: A scoping review

Cirillo

Collins

et al. 2019

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“…Given that the two primary objectives of orthopedic surgery in improving QOL are often functional improvement or pain reduction, pain is a definite concern and something that needs to be addressed as people with AMC age. People with AMC, as they get older, experience significant chronic pain (Jones, Miller, Street, & Sawatzky, ). Thirty‐nine out of 43 people with AMC had chronic pain in Dai et al's study (Dai et al, ).…”

Section: Discussionmentioning

confidence: 99%

The relationship between joint surgery and quality of life in adults with arthrogryposis: An international study

Jones

Miller

et al. 2019

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Individuals with Arthrogryposis Multiplex Congenita (AMC) are born with multiple joint contractures in multiple body areas, typically manifested as clubfeet, extended or flexed knees and/or elbows, and internal shoulder rotation, and clasped hands.They require multiple surgeries as children, but there is little data that reports their aging and future quality of life (QOL). This study describes the relationship between AMC-related surgically-managed joints in childhood and adulthood, and QOL as adults. Participants (n = 83) from 14 countries completed an online questionnaire followed by a telephone/Skype interview as adults. Data points collected regarding total number of surgeries, affected joints, country of origin, sex, age, and SF-36's Physical Capacity Score (PCS) for QOL were analyzed using a beta regression model to explore which factors may potentially influence adult QOL. The average number of surgeries per participant was 9.8, with at least 50% performed during childhood. 78, 45, and 31% of participants had foot, knee, and hip surgeries, respectively. The model demonstrated that knee and/or shoulder surgeries were more likely to have a negative correlation with PCS; elbow surgery, however, showed a positive correlation, as elbow function may impact independent function. However, future expansion of this data set to a longitudinal registry would provide better ongoing surgery-specific data. K E Y W O R D S adults, Arthrogryposis, quality of life, surgery

“…Standardized questionnaires were chosen from SCIRE to cover the four domains of the ICF model in a balanced fashion. After the scoping review was completed, the primary author of this article validated of the Oswestry Disability Index as an outcome measure for pain and disability in the adult AMC population (Jones, Miller, Nouraei, & Sawatzky, ), which supported its inclusion in the registry development. Topic domains of the other chosen questionnaires were fatigue, quality of life, anxiety and depression, sexual health, upper extremity function, physical activity, workplace limitations, and participation.…”

Section: Methodsmentioning

confidence: 96%

Development of an online registry for adults with arthrogryposis multiplex congenita: A protocol paper

Dahan‐Oliel

Davison

et al. 2019

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Arthrogryposis multiplex congenita (AMC) is considered a rare disorder resulting in multiple congenital contractures in two or more areas. Considerable literature is available on managing the contractures during an affected child's development but little information is available to those managing these ongoing issues in adulthood. Due to the heterogeneity etiological factors and presentation of AMC, and the small sample sizes of previous studies, it has been difficult to generalize results to the adult population. This current study presents the several steps taken to create an international AMC database for adults to populate with their own data over time. The methods included a scoping review of the literature for valid and reliable outcome measures used for AMC, a Delphi methodology to create the database with a team of clinicians, researchers and patients, a Beta testing of the database, and a final launch of the Adult AMC Registry. This registry includes 48 nonstandardized questions and 12 standardized questionnaires. It takes 35-45 min for a participant to complete. A shorter version will be created for participants to complete for years 2 and 3, followed by this longer version every 4 years. The protocol for referring English-speaking patients and access to the registry is provided.