Endocrine Abstracts

McCune–Albright syndrome and fibrous dysplasia are a rare sporadic skeletal disorder in which normal bone structures and marrow are replaced by a benign fibrous tissue. The disease can be limited to one or many bones and is more prevalent in females. One of the clinical consequences experienced by patients is severe bone pain for which bisphosphonates are an effective treatment.

By the use of a nursing model for the treatment of the patient with this rare disease it can enable the holistic care of the patient. Roper, Logan and Tierney (1980) is one of the many nursing models it uses 12 components and is based on the activities of daily living, which can be utilised to ensure all the components of a patients care can be encompassed. The patient assessed in the outpatient setting is a female who has a severe form of the disease she has scoliosis, is wheelchair bound, suffered many fractures, had a hysterectomy and breast cancer. When reviewing the patient it is important that the holistic care of the patient is taken into account, not just the treatment of the medical condition.

The nurses role is pivotal to the positive experience of the patient, and builds a meaningful relationship in the management of this rare disorder. As a specialist nurse it is essential that the patient has confidence in the ability of the nurse to provide expert advice and effective communication so that the patient feels comfortable contacting the helpline when she is suffering with pain and that the nurse has systems in place and so can expedite admission to the Programmed investigation unit, taking into account the complexities of the disease and the practicalities of attending the hospital such as transportation, dietary needs, and eliminating, and building a rapport with the patient and showing compassion.