The International Hip Dysplasia Institute reports that individuals with hip dysplasia see an average of 3 healthcare providers and have symptoms for over 5 years before getting an accurate diagnosis. This article provides a summary of a study by Tina Gambling and Andrew Long (2019) that explores how developmental dysplasia of the hip (DDH) impacts quality of life (QOL) and overall psycho-social well-being of individuals. It also talks about how quality of life and psycho-social well-being may be impacted by the length of time from the onset of symptoms to diagnosis and treatment.

Individuals in this study fell into two groups based on how long they had symptoms before receiving their DDH diagnosis and treatment. Individuals in the first group were diagnosed and treated at a specialty center within 12 months of having symptoms. The second group received a late/delayed diagnosis and had symptoms for 1-8 years before being diagnosed and treated. Individuals in the second group reported being more debilitated and experienced chronic hip pain for a prolonged period before getting an accurate diagnosis and treatment plan. It is clear from the patients’ narratives that chronic pain negatively affected their QOL and psycho-social well-being.

Being mentally prepared for surgery also differed between the two groups. Patients in the early diagnosis/treatment group talked about struggling with the variability of their symptoms. They often experienced symptoms with high-impact activities and their symptoms improved once they stopped these activities. This made it hard for them to understand and justify why they might need such an invasive surgery. Patients in the late diagnosis group welcomed any treatment that would relieve the symptoms they had for so long, but they still feared that surgery would make things worse. Both groups found that surgery was difficult since they had to take long periods of time out of their lives and routines to recover, and many felt very isolated. Many patients used online forums to seek advice on recovery and rehabilitation and found social support through them.

Patients in the early diagnosis/treatment group tended to adapt and recovery better than those who experienced a lengthy time to diagnosis and treatment. Patients with an earlier diagnosis tended to recover and return to their normal activities faster and more predictably than those who had a later diagnosis. Patients with a late diagnosis tended to have fewer treatment options, more difficulty post-operative recoveries, and many struggled with knowing that they would likely need to have a hip replacement.

Both groups talked about their need to redefine their “sense of self’ by developing coping strategies and interests conducive to living with a chronic hip condition. Patients with a later diagnosis described how hard it was to pick up their lives when they had lost so much through the hip disability they experienced. Both groups reported struggling to cope physically and psychologically, and all patients described the lasting physical and emotional impacts of DDH.

Take Away Message:

This study adds to the growing body of information on the importance of improving hip dysplasia awareness and early diagnosis. There is a need for frontline healthcare providers such as primary care physicians, physical therapists, athletic trainers, coaches, and sports medicine physicians to be aware of the risk factors, signs, and symptoms of hip dysplasia so that patients can be diagnosed early and an appropriate treatment plan can be developed.

This study also adds to the growing body of information on the impact of hip surgeries and chronic pain on mental health and overall well-being of individuals with DDH. Individuals with DDH may experience stress, anxiety, depression, and insomnia which can negatively affect their quality of life and psycho-social well-being, as well as their surgical outcomes. Patients with DDH who are considering hip surgery and/or are living with chronic pain due to their hip condition should be screened for these disorders so that support can be provided.

If you are a patient with DDH and feel that you are struggling with anxiety, depression, insomnia, or increased stress that is impacting your quality of life, don’t hesitate to talk to your hip surgeon or primary care doctor. They can help provide guidance on coping strategies, may be able to connect you with a patient mentor to provide support, and can help with additional recommendations and referrals including health coaching, talk therapies, and medications, if necessary.

Reference

Gambling, T.S. & Long, A. (2019). “Psycho-Social Impact of Developmental Dysplasia of the Hip and of Differential Access to Early Diagnosis and Treatment: A Narrative Study of Young Adults.” SAGE Open Medicine, vol. 7, 2019, p. 205031211983601., doi:10.1177/2050312119836010.

Other references related to DDH and mental health

Gambling, T., & Long, A. F. (2011). An exploratory study of young women adjusting to developmental dysplasia of the hip and deciding on treatment choices. Chronic Illness, 8(1), 17-30. doi:10.1177/1742395311417638

Gambling, T., & Long, A. F. (2011). An exploratory study of young women adjusting to developmental dysplasia of the hip and deciding on treatment choices. Chronic Illness, 8(1), 17-30. doi:10.1177/1742395311417638

Hampton, S. N., Nakonezny, P. A., Richard, H. M., & Wells, J. E. (2019). Pain catastrophizing, anxiety, and depression in hip pathology. The Bone & Joint Journal, 101-B(7), 800-807. doi:10.1302/0301-620x.101b7.bjj-2018-1309.r1

Podeszwa, D. A., Richard, H. M., Nguyen, D. C., Rocha, A. D., & Shapiro, E. L. (2014). Preoperative Psychological Findings in Adolescents Undergoing Hip Preservation Surgery. Journal of Pediatric Orthopaedics, 1. doi:10.1097/bpo.0000000000000243

Prather, H., Creighton, A., Sorenson, C., Simpson, S., Reese, M., Hunt, D., & Rho, M. (2017). Anxiety and Insomnia in Young and Middle-Aged Adult Hip Pain Patients With and Without Femoroacetabular Impingement and Developmental Hip Dysplasia. Pm&r, 10(5), 455-461. doi:10.1016/j.pmrj.2017.10.007

Richard, H. M., Nguyen, D. C., Podeszwa, D. A., Rocha, A. D., & Sucato, D. J. (2018). Perioperative Interdisciplinary Intervention Contributes to Improved Outcomes of Adolescents Treated With Hip Preservation Surgery. Journal of Pediatric Orthopaedics, 38(5), 254-259. doi:10.1097/bpo.0000000000000816

Authors:

Ashley Spalla and Nancy Muir, PT, DPT, PCS