ABSTRACT
The health-related quality of life is reduced in patients with achondroplasia (ACH) and hypochondroplasia (HCH); however, the detailed inconveniences in the daily living and individual adaptations have not been elucidated. This study aimed to evaluate the inconvenience and adaptation in patients with ACH/HCH. A cross-sectional study was conducted in patients with ACH/HCH aged 20 yr or older. Questionnaires were sent to 567 patients (described 86) with a medical history at the co-authors' institutions or who were registered at the patients' association with ACH in Japan. The questionnaire included a free description format for the inconveniences and adaptations in daily living; a content analysis was performed. The recorded inconveniences included 148 physical, 84 mental, and 52 social problems. Patients who underwent spine surgery had significantly more recorded physical problems than those who did not (p < 0.05). Pain and numbness were significantly higher in patients aged ≥ 50 yr (p < 0.05). The 160 and 1 adaptations were for physical and social problems, respectively. No patient adaptation was found for mental health problems. Individual adaptations by ACH/HCH patients can improve only some aspects of physical and social problems. Multilateral social support is needed to resolve patients' issues.
ABSTRACT
OBJECTIVES: The objective of this study was to shed light on (1) the extent to which primary caregivers of patients with brain damage feel nursing-care burden, and (2) the relationship between such burden and other attributes in a cross-sectional manner. METHODS: We conducted an anonymous questionnaire survey of primary caregivers of young patients with brain damage. The survey was conducted between November 2008 and March 2009. The number of valid responses was 53 (response rate 56%). To assess burden of caregivers, we used the Short Version of the Japanese Version of the Zarit Caregiver Burden Interview (J-ZBI_8). RESULTS: With regard to burden felt by primary caregivers "concerns about excretion" and "problematic behavior" were stressed. Individuals who were less than 50 in age most strongly felt burden. Moreover, burden was greater for spouses than for guardians. CONCLUSION: In order to reduce the burden of caregivers in case of primary caregivers, rehabilitation concerning young patients with brain damage and efforts to enhance their capabilities are important. In addition, it is also necessary to provide social resources so that primary caregivers can rely on other persons without worry.
