Abstract
Patients with chronic progressive disease have a low health-related quality of life (HRQoL); however, various compensation mechanisms can improve and restore quality of life (QoL) even in cases of severe physical disability. In this study, we evaluate QoL according to patient value by individual QoL evaluation and identify QoL determinants in patients with stiff-person syndrome (SPS) to consider appropriate support measures. By 13 December 2020, SPS patients completed semi-structured interviews. For patients, the positive factors were "family support" and "parental care", while the negative factors were "physical symptoms" and "relationship with doctors". Parental care" was identified as the most important area, but satisfaction was low. Therefore, in each case, support is needed to ensure that the patient is satisfactory. In addition, "physical symptoms" are the strongest negative areas and can be alleviated with appropriate medical assistance. In addition, rehabilitation should work on pain relief caused by muscle spasms and stiffness.
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