Concept

Programmed Sports Therapy (PST) is a specialized form of exercise therapy, optimally tailored to the needs of people with rare diseases, with the aim of improving patients’ physical condition. Although numerous studies now demonstrate the positive effects of targeted exercise on performance and quality of life in people with haemophilia—and exercise therapy is an established component of treatment guidelines—many patients are unable to participate for various reasons. Local offerings and specialized therapeutic support are often lacking. The introduction of PST for people with haemophilia was designed to address these barriers.

PST was developed for haemophilia patients by an interdisciplinary team of physicians and sports/physiotherapists. It combines supervised group training with a guided, home-based program carried out independently but with ongoing support. Group training takes place as movement and sports camps held twice a year over 3.5 days. These camps provide an opportunity to be physically active together within individual limits. In practical sessions and theoretical seminars, participants learn how to train optimally and purposefully, tailored to their needs, to improve physical and psychological well-being. Individual training plans, created together with each patient during the camp, structure the home program so everyone can continue training independently. Between camps, therapists and patients remain in regular contact to motivate, answer questions, and continuously adjust the plan to the patient’s needs. Home training is supported by sports therapists using modern media.

Content-wise, PST combines specific exercises to improve joint status with a general activity program to support overall health. The therapeutic content is framed by the integrative model of functional joint stability by Lee and Vleeming (2000), which comprises the elements: awareness, motor control, active stability, and passive stability. These elements provide direct therapeutic access to the affected joint and closely interact with one another.

The overarching goal is to maintain or improve each individual’s physical capacity for everyday activities. Therapy focuses on body awareness, training of the musculoskeletal system, and the cardiovascular system (see figure).

From our perspective, training body awareness—and thereby optimizing body schema—offers the most effective entry point for sports therapy in people with haemophilia. Improved perception of one’s body, postures, and movements facilitates learning motor exercises while protecting passive structures. After establishing conscious access to the joint, mobilization techniques are used to maintain or increase range of motion. At the end of each session, tone-regulating measures help release muscle tension—gentle stretching and relaxation techniques are particularly suitable. In addition to these foundation exercises, muscle-activating measures to train strength and coordination are included in therapy sessions.

Regular, individually dosed endurance training is also used to target the cardiovascular system and muscle metabolism, thereby improving cardiac function and overall physical capacity. Metabolism is stimulated, supporting better nourishment of muscles and joints (including cartilage). Excess weight—which places additional load on joints—should be reduced. This is implemented through activities such as stationary cycling, Nordic walking, gait training, aqua jogging, and strength training with higher repetitions at low intensity. The therapeutic methods and techniques employed in PST in recent years have proven effective, sensitive, and individually adaptable. PST content can be tailored to any level of demand, any age, and any degree of physical limitation. Moreover, thanks to its modular structure, the PST concept can be purposefully transferred to other rare diseases.