1 INTRODUCTION

Down syndrome is a genetic condition resulting from an extra copy or material from chromosome 21 (Bull, 2020). Adults with Down syndrome often do not meet recommended physical activity levels. Low physical activity levels are known to increase the risk for co-occurring chronic medical conditions, including osteoporosis and dementia, for which individuals with Down syndrome are at increased risk (Agiovlasitis et al., 2020; Bull, 2020; Chicoine et al., 2021; Oreskovic et al., 2020). In addition, individuals with Down syndrome are at increased risk for medical conditions impacted by physical activity, including respiratory and mental health conditions (Ptomey et al., 2023). Physician counseling on physical activity may be helpful in motivating patients and caregivers to increase physical activity levels in adults with Down syndrome, and support in creating physical activity plans that match with the patient's capacity. In order to invite these conversations, it is important for physicians to carry out physical activity assessments and/or counseling with their patients. While most adults with Down syndrome in the US are followed by primary care physicians, only a small percentage are followed by the relatively few Down syndrome specialty clinics available in the US (Skotko et al., 2013). Assessment and counseling of health habits, including physical activity, must therefore occur within the primary care visit for most patients with Down syndrome. The degree to which health care providers assess and counsel adults with Down syndrome on physical activity is not known. This brief report therefore sought to assess the rates of physical activity assessment and counseling for adults with Down syndrome by primary care physicians and Down syndrome specialists.

2 METHODS

3 RESULTS

One hundred and forty-eight subjects were included in the study (Table 1). Slightly more than half of the adults identified as female (53.3%). Patients were a majority White (84.5%) and non-Hispanic (90.5%). The mean age was 31.7 years (range: 18–66), with the largest age group between 21 and 30 years (43.9%). All of the patients (148/148, 100%) had a documented physical activity assessment during their annual Down syndrome clinic visit. About half of the patients (80/148, 54%) had a physical activity assessment documented by their primary care physician at any visit during the calendar year. All of the patients (148/148, 100%) had documented physical activity counseling during their annual Down syndrome clinic visit. Less than half of the patients (64/148, 43%) had physical activity counseling documented by their primary care physician at any visit during the calendar year. Patients were more likely to receive physical activity assessment and/or counseling from their primary care physician if they were 40 years or older, with 60% (27/45) of patients aged 18–24 years receiving assessment and/or counseling vs. 62.2% (46/74) of patients aged 25–39 years, and 82.8% (24/29) of patients 40 years or older. Physical activity assessment and counseling did not appear to differ by weight status, with 60.5% (26/43) of patients with a body mass index (BMI) <25 receiving assessment and/or counseling compared to 67.6% (71/105) of patients with a BMI ≥ 25.

4 DISCUSSION

This study sought to understand and identify patterns in physical activity counseling by physician specialty in adults with Down syndrome. We found that specialist physicians in Down syndrome universally assessed and counseled their adult patients with Down syndrome on physical activity, while only around half of primary care physicians assessed and fewer than half counseled on physical activity. Given the increased risk for medical conditions associated with and exacerbated by low physical activity, and the increased likelihood of receiving medical care from a primary care physician in adults with Down syndrome, our study findings highlight important gaps in care.

To our knowledge, this is the first study to assess physical activity counseling patterns specifically in individuals with Down syndrome. Our findings that around half of primary care physicians counsel on physical activity is similar to physical activity counseling rates by primary care physicians in other populations at risk for long term medical complications, such as patients at high-risk for cardiovascular disease (Omura et al., 2018).

Physicians are known to face many well-described barriers to physical activity counseling, including insufficient knowledge, low self-efficacy, perceived low efficacy, time constraints, and limited financial reimbursement (Oreskovic et al., 2014; Perrin et al., 2005; Taveras et al., 2007). For example, methods such as Cognitive-Behavior Therapy that could support individuals finding ways to increase physical activity, require additional training and visit time, which primary care physicians often do not have during their visit. Down syndrome specialists, by contrast, typically have longer scheduled visits and may be more familiar with the importance of physical activity and other co-occurring medical condition risks in individuals with Down syndrome, resulting in heightened awareness and urgency for counseling by specialists during patient visits. Most patients do not have access to a Down Syndrome specialty clinic, however, underscoring the need for increased awareness and training among primary care physicians.

The limitations of this study include generalizability and data capture. Data from only one Down syndrome specialty center were included in this study, and health habit assessment and counseling habits may vary at other Down syndrome specialty clinics. We used the hospital's electronic health records system to collect physical activity counseling data from both specialists and primary care physicians. It is possible that notes from primary care physicians outside the health network may have been missed, which would result in an undercounting of the physical activity assessment and counseling counts for primary care physicians. The hospital's electronic health records system is integrated with other Epic systems, however, with data and visit notes from many other local and national healthcare networks available for viewing, making this less likely on a large scale. It is also possible that primary care physicians may have assessed and discussed physical activity without documented efforts. A strength of this study is that PCPs were included from outside health networks and states, thus increasing the likelihood that these findings reflect broader PCP practice patterns. Additionally, documented counseling data were used, a methodology not prone to recall bias as in many physical activity counseling studies that rely on self-report and caregiver-report.

5 CONCLUSION

Wide variations in care exist in physical activity counseling by physician type treating adult patients with Down syndrome. Primary care physicians do not routinely assess or counsel on the importance of physical activity in this population. As most patients with Down syndrome receive their medical care from a primary care physician, a better understanding of the barriers to physical activity counseling by primary care physicians for patients with Down syndrome is essential to increase counseling rates for this population.