Egger B, Müller M, Bigler S, Spirig R
Abteilung Klinische Pflegewissenschaft, Universitätsspital Basel, Schweiz.
Pflege. 2012 Oct;25(5):329-41. doi: 10.1024/1012-5302/a000229.
Since there is no data available about the needs of people living with Multiple Sclerosis and significant others in Switzerland a questionnaire based cross sectional study was conducted with 878 patients and 615 family caregivers. This Swiss study used the addresses from the Swiss Multiple Sclerosis Society. The response rate was 35.2 % for patients and 70.1 % for significant others. Data analysis included descriptive and inferential statistics. Results showed that information needs are most important followed by consultation. 42.4 % of patients and 39.2 % of family caregivers need more information about alternative treatment options and 34.4 %, resp. 36.6 % about actual research results. For 39.5 % of patients, the possibility of using of their wheelchair in public is insufficient. Approximately a third of patients need more consultation in order to better manage cognitive impairment and fatigue. 30.9 % of family caregivers need more consultations in order to better manage their feelings of burden. Influencing factors of patients' need for consultation about fatigue are health status, quality of life, and anxiety. Patients' need for consultation about their management of cognitive impairment was influenced by health status, medication, and their ability of dealing with constraints and anxiety. The results showed that an enhancement of the quality of treatment and care based on patients' and family caregivers' needs are urgently needed.
由于瑞士缺乏有关多发性硬化症患者及其重要他人需求的数据，因此对878名患者和615名家庭照顾者进行了一项基于问卷调查的横断面研究。这项瑞士研究使用了瑞士多发性硬化症协会的地址。患者的回复率为35.2%，重要他人的回复率为70.1%。数据分析包括描述性统计和推断性统计。结果表明，信息需求最为重要，其次是咨询。42.4%的患者和39.2%的家庭照顾者需要更多关于替代治疗方案的信息，分别有34.4%和36.6%的人需要更多关于实际研究结果的信息。对于39.5%的患者来说，在公共场合使用轮椅的可能性不足。大约三分之一的患者需要更多咨询，以便更好地应对认知障碍和疲劳。30.9%的家庭照顾者需要更多咨询，以便更好地应对他们的负担感。患者疲劳咨询需求的影响因素包括健康状况、生活质量和焦虑。患者认知障碍管理咨询需求受健康状况、药物治疗以及应对限制和焦虑能力的影响。结果表明，迫切需要根据患者和家庭照顾者的需求提高治疗和护理质量。
