FACTORS RELATING TO CARER BURDEN FOR FAMILIES OF PERSONS WITH MUSCULAR DYSTROPHY Franc ¸ois Boyer, MD, PhD 1 , Moustapha Drame, MD 2 , Isabella Morrone 2 and Jean-Luc Novella, MD, PhD 2 From the 1 Department of Physical Medicine and Rehabilitation and 2 Department of Neurology Gerontology, Reims University Hospital, France Objective: To assess the burden on family carers of persons with muscular dystrophy living in their homes and to determine factors contributing to carer burden. Methods: The study included 56 dyads of people with muscular dystrophy and their family carers. The variables for carer burden were compared by logistic regression in 2 carer groups (burden //burden  ). Results: The mean age of the patients with muscular dystrophy was 32.7 years (median 26.7, range 15  65 years) and that of the carers 51 years (median 48, range 30  80 years). The carers reported the care burden using the Zarit Burden Inventory (median score 23, range 0  57/88). Multi- variate analysis produced 3 adjusted explicative factors: carer characteristics related to risk of perceived burden are self- report of poor social functioning on the SF-36 (OR  /26.6 (2.6  278); p  /0.006), self report of anxiety on the Hospital Anxiety Scale (OR  /7.1 (1.4  36); p  /0.02) and being a carer under 48 years of age (OR  /7.8 (1.7  34.5); p  /0.007). However, it was difficult to dissociate the different health variables of the carers from each other. Conclusion: This approach should lead to better decision- making by medical teams, patients and their carers. Key words: adult, carers, quality of life, muscular dystrophy, disabled persons. J Rehabil Med 2006; 38: 309  315 Correspondence address: Franc ¸ois Boyer, Department of Physical Medicine and Rehabilitation, 48 rue de Se ´bastopol, Se ´bastopol Hospital, Reims University Hospital Center, FR- 51092 Reims Cedex, France. E-mail: fboyer@chu-reims.fr Submitted August 11, 2005; accepted March 27, 2006 INTRODUCTION Neuromuscular disease involves a loss of muscular strength, which is an objective restriction to the abilities of the patient. The degree and severity of loss of strength varies. The characteristics or complications of all neuromuscular diseases include progres- sive weakness, limb contracture, spine deformity, decreased cardiopulmonary function and, in some, intellectual impairment. These pathologies are classified as rare diseases. They may start at any age. A Swedish population study found an overall prevalence for muscular dystrophy of 39/100,000 inhabitants for some 30 pathological forms described (1). In the absence of any curative treatment, these degenerative diseases are currently dealt with in an essentially palliative manner. However, due to improvements in medical follow-up and care of these patients, life expectancy has increased considerably. As a result, the period of dependency for these patients on their family carers is also lengthening. Despite high levels of dependency, many people with muscular dystrophy live at home, thanks to so-called ‘‘informal’’ carers, who are often relatives. Maintaining a patient in the home is often only possible through the presence of a family member. The health of this main carer who devotes him/herself to the relative with muscular dystrophy in many ways conditions both the duration and the quality of care in the home. Carers have a greater risk of subjectively perceived ill-health and poor health-related quality of life (HRQoL). In order to improve the quality of life for carers of patients with muscular dystrophy, it is important to explore the interactions within the carer/patient dyad. In establishing an overall care protocol, and as a complement to medical information, it is therefore important to be able to identify environmental or human factors that affect the burden experi- enced by the carer. Interactions, whether environmental or emotional, that are liable to improve the quality of life of the dyad need to be determined so as to facilitate maintenance in the home for the person with muscular dystrophy, while at the same time avoiding reaching exhaustion point for the carer. Health professionals need to be able to recognize critical situations so as to make medical and social resources available to improve the quality of life of the patient/carer dyad. No study has attempted to measure the material and emotional care burden in family carers of subjects with muscular dystrophy, and the factors that influence the feeling of burden. Although there is considerable research now avail- able on caring for older people, there is less on burden for carers of younger people. This is probably because muscular dystrophy is a rare condition, but it is important to recognize the burden experienced by carers of people with this condition and to identify ways of assisting them. This study was designed to assess the care burden for family carers of patients with muscular dystrophy and to identify factors determining the care burden. METHODS Data was collected for the period April 2003 to September 2004. It was a single-centre study of family carers caring for patients followed in J Rehabil Med 2006; 38: 309  315 # 2006 Taylor & Francis. ISSN 1650-1977 DOI: 10.1080/16501970600731578 J Rehabil Med 38