Most individuals with a childhood onset disability (COD) such as Cerebral Palsy (CP) are adults and may experience normal life expectancies; however, healthcare, clinical interventions, and research is mostly focused on children. Adult life comes with challenges in housing, work, relationships, own family life and overall participation. Adults with CODs may experience secondary musculoskeletal morbidity, pain, fatigue, cardiometabolic diseases, and mental health outcomes such as depression and anxiety that may develop or be influenced by the disability, the presence of impairment, and/or the possibly accelerated process of aging. Consequently, there is a need for approaching health care delivery for adults with COD within the context of a life course health development model.
Adults living with CODs such as CP may expect near-normal life expectancies; however, there is a complete lack of follow-up for individuals after they transition from pediatric to adult care, and inadequate longitudinal data to determine the natural history of CODs across a lifespan. The sad reality is that despite the increasing number of people living with CODs, there is also a lack of coordinated services and trained specialists and primary care providers who understand their unique medical needs, as these patients are still viewed collectively as having a “pediatric” medical condition. This is unquestionably troubling for youth with disabilities as they transition to adulthood and are left to navigate their confusing and disjointed options for continued healthcare services. The goal of this Research Topic is to increase clinical and public health awareness of the physical and psychological morbidities common among adults living with CP and other CODs, and to expand upon the social determinants of health (e.g., environmental, socioeconomic conditions, public policies, etc.) that may contribute to disparities in or enhance the access, coordination, and continuity of clinical care for these populations.
Topics may include but are not limited to:
• Transition from childhood to adulthood with a COD
• Health outcomes in adults with CODs musculoskeletal morbidity, cardiometabolic diseases, respiratory function, obesity
• Mental health, psychological, and cognitive health outcomes
• Adult life, activity & participation, work, relationships, family formation, parenthood
• Aging with a COD
• Access to health care and health care programs for adults with CODs
• Physical activity, mobility, fall risk, fractures, bone health
• Pain, fatigue, sleep, quality of life
• Social determinants of health
• Nutrition, communication
• Co-morbidities
Most individuals with a childhood onset disability (COD) such as Cerebral Palsy (CP) are adults and may experience normal life expectancies; however, healthcare, clinical interventions, and research is mostly focused on children. Adult life comes with challenges in housing, work, relationships, own family life and overall participation. Adults with CODs may experience secondary musculoskeletal morbidity, pain, fatigue, cardiometabolic diseases, and mental health outcomes such as depression and anxiety that may develop or be influenced by the disability, the presence of impairment, and/or the possibly accelerated process of aging. Consequently, there is a need for approaching health care delivery for adults with COD within the context of a life course health development model.
Adults living with CODs such as CP may expect near-normal life expectancies; however, there is a complete lack of follow-up for individuals after they transition from pediatric to adult care, and inadequate longitudinal data to determine the natural history of CODs across a lifespan. The sad reality is that despite the increasing number of people living with CODs, there is also a lack of coordinated services and trained specialists and primary care providers who understand their unique medical needs, as these patients are still viewed collectively as having a “pediatric” medical condition. This is unquestionably troubling for youth with disabilities as they transition to adulthood and are left to navigate their confusing and disjointed options for continued healthcare services. The goal of this Research Topic is to increase clinical and public health awareness of the physical and psychological morbidities common among adults living with CP and other CODs, and to expand upon the social determinants of health (e.g., environmental, socioeconomic conditions, public policies, etc.) that may contribute to disparities in or enhance the access, coordination, and continuity of clinical care for these populations.
Topics may include but are not limited to:
• Transition from childhood to adulthood with a COD
• Health outcomes in adults with CODs musculoskeletal morbidity, cardiometabolic diseases, respiratory function, obesity
• Mental health, psychological, and cognitive health outcomes
• Adult life, activity & participation, work, relationships, family formation, parenthood
• Aging with a COD
• Access to health care and health care programs for adults with CODs
• Physical activity, mobility, fall risk, fractures, bone health
• Pain, fatigue, sleep, quality of life
• Social determinants of health
• Nutrition, communication
• Co-morbidities
