Quality of life in patients with muscular dystrophy and their next of kin

The aims of this study were to investigate quality of life (QoL) among adult patients with muscular dystrophy (n=46) and their next of kin (n=36) and to investigate the influence of disease-related and demographic factors on QoL. The questionnaire 'Subjective estimation of quality of life' was used. The results show that patients had lower QoL than their next of kin regarding having no work or meaningful occupation, energy, self-assuredness, self-acceptance and emotional experiences. Age of onset of disease had an impact on QoL. The need for a ventilator had an influence only on assessment of energy. Patients without a partner assessed lower than those who had a partner. In the case of a person who is young and single the onset of muscular dystrophy reduces the likelihood of having a partner or children and affects personal economy negatively. Assessment of relationship to friends was lower among next of kin who provided daily help than among those who provided help once a week. There is a need for recurrent rehabilitation during life-long disabilities and a need to give particular support to those with early onset of disease, those who are single and those who are childless. It is also important to include the patient's close relations when giving rehabilitation.