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The relationship between joint surgery and quality of life in adults with arthrogryposis: An international study
Bonita Sawatzky1,2, Talon Jones1, Rebecca Miller1
1Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.
Insights
Arthrogryposis Multiplex Congenita (AMC) patients often undergo numerous childhood surgeries. Adult quality of life (QOL) is negatively impacted by knee and shoulder surgeries, but positively by elbow surgeries.
Area of Science:
- Orthopedics
- Rehabilitation Medicine
- Pediatric Surgery
Background:
- Arthrogryposis Multiplex Congenita (AMC) is a condition characterized by multiple joint contractures at birth.
- Individuals with AMC typically require extensive surgical interventions during childhood.
- Long-term data on the aging process and quality of life (QOL) for AMC patients is limited.
Purpose of the Study:
- To investigate the long-term relationship between surgically managed joints in childhood due to AMC and adult quality of life.
- To identify specific joint surgeries that may influence physical capacity and overall QOL in adulthood.
Main Methods:
- An online questionnaire and subsequent interviews were used to collect data from 83 adult participants across 14 countries.
- Data included the number and type of surgeries, affected joints, demographics, and the SF-36 Physical Capacity Score (PCS) for QOL.
- A beta regression model was employed to analyze the correlation between surgical history and adult QOL.
Main Results:
- Participants underwent an average of 9.8 surgeries, with over 50% occurring in childhood.
- Foot, knee, and hip surgeries were most common, affecting 78%, 45%, and 31% of participants, respectively.
- Knee and/or shoulder surgeries showed a negative correlation with PCS, while elbow surgeries demonstrated a positive correlation with QOL.
Conclusions:
- Childhood surgical management for AMC impacts adult physical capacity and QOL.
- Elbow function appears crucial for maintaining independent function, positively correlating with QOL.
- Further longitudinal studies and data registries are recommended for comprehensive long-term outcome analysis.
Abstract:
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.
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