Care management protocols are a team-based, patient-centred approach designed to assist patients and their support systems in managing medical conditions more effectively. No specific protocols that are nationally approved and applicable to all patients are in place in South Africa for patients with muscular dystrophy. Importantly, the protocols for patients with muscular dystrophies in South Africa are similar to those for patients elsewhere in the world. Thus most treating clinicians would tend to refer to international care protocols and follow these or adapt them. Care management protocols assist patients to get comprehensive and systematic care in a coordinated fashion. Unfortunately, the majority of patients have relatively limited access to comprehensive care and particularly team-based care.
What medical professionals should I enlist for my care management?
There are many different muscular dystrophies, which affect individuals of all ages and to different degrees. They may also affect other organ systems to varying degrees. All individuals should have one health professional who is primarily responsible for their care and who coordinates their visits and assessments with those of other health professionals. The primary carer should ensure that all their treatments and medications are coordinated and that no medications or therapies interact adversely. The primary carer would typically be a neurologist but could be one of many types of heath care professional. People with muscular dystrophy may also require assessment and management by other clinicians, including cardiologists, pulmonologists, orthopaedic surgeons, gastroenterologists, general paediatricians and general physicians.
Allied health care professionals are also extremely important in the care of individuals with muscular dystrophies as they support diagnosis, recovery, and quality of life. These include physiotherapists, occupational therapists, biokineticists, speech therapists and dieticians, who should all work not only to assist patients to maintain strength and mobility but also to ensure that appropriate assistance is provided for activities of daily living.
Medical geneticists and genetic counsellors are also important as they can assist not only in directing appropriate genetic testing for a confirmation of diagnosis but also in defining risks for other family members. Genetics professionals also assist in directing appropriate health care and ensuring that individuals have the information required to deal with their disease. Genetic counselling is the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease. This process integrates the interpretation of family and medical histories to assess the chance of disease occurrence or recurrence, education about inheritance, testing, management, prevention, resources, research and counselling to promote informed choices and adaptation to the risk or condition.