Service d'Hépato-gastroentérologie, Hôpital Avicennes, 125 avenue de Stalingrad, 93000 Bobigny, France; Service d'Hépato-gastroentérologie, Hôpital Charles Nicolle, 1 rue de Germont, 76000 Rouen, France; Service d'Hépato-gastroentérologie, Hôpital Archet, 151 route Saint Antoine de Ginestière, 06200 Nice, France; Service d'Hépato-gastroentérologie, Hôpital Haut-Lévêque, 1 avenue Magellan, 33604 Pessac cedex, France; Service d'Hépato-gastroentérologie, CHU Estaing, 1 Place Lucie Aubrac, 63003 Clermont-Ferrand, France; Service d'Hépato-gastroentérologie, CHU de Nantes, 1 Place Alexis Ricordeau, 44000 Nantes, France; Service d'Hépato-gastroentérologie, Hôpital Nord-CHU de Grenoble Alpes, 38700 La Tronche, France; Service d'Hépato-gastroentérologie, Hôpital Edouard Herriot, 5 Place d'Arsonval, 69437 Lyon, France; 15 Allées Léon Gambetta, 92110 Clichy, France; 32 avenue de la République, 94300 Vincennes, France; Association des Patients Souffrant du Syndrome de l'Intestin Irritable, Hôpital Avicennes, 125 avenue de Stalingrad, 93000 Bobigny, France; Explorations Fonctionnelles Digestives, Hôpital Charles Nicolle, 1 rue de Germont, 76000 Rouen, France; Service d'Hépato-gastroentérologie, Hôpital Ambroise Paré, 9 avenue Charles de Gaulle, 92100 Boulogne-Billancourt, France.
Service d'Hépato-gastroentérologie, Hôpital Avicennes, 125 avenue de Stalingrad, 93000 Bobigny, France; Service d'Hépato-gastroentérologie, Hôpital Charles Nicolle, 1 rue de Germont, 76000 Rouen, France; Service d'Hépato-gastroentérologie, Hôpital Archet, 151 route Saint Antoine de Ginestière, 06200 Nice, France; Service d'Hépato-gastroentérologie, Hôpital Haut-Lévêque, 1 avenue Magellan, 33604 Pessac cedex, France; Service d'Hépato-gastroentérologie, CHU Estaing, 1 Place Lucie Aubrac, 63003 Clermont-Ferrand, France; Service d'Hépato-gastroentérologie, CHU de Nantes, 1 Place Alexis Ricordeau, 44000 Nantes, France; Service d'Hépato-gastroentérologie, Hôpital Nord-CHU de Grenoble Alpes, 38700 La Tronche, France; Service d'Hépato-gastroentérologie, Hôpital Edouard Herriot, 5 Place d'Arsonval, 69437 Lyon, France; 15 Allées Léon Gambetta, 92110 Clichy, France; 32 avenue de la République, 94300 Vincennes, France; Association des Patients Souffrant du Syndrome de l'Intestin Irritable, Hôpital Avicennes, 125 avenue de Stalingrad, 93000 Bobigny, France; Explorations Fonctionnelles Digestives, Hôpital Charles Nicolle, 1 rue de Germont, 76000 Rouen, France; Service d'Hépato-gastroentérologie, Hôpital Ambroise Paré, 9 avenue Charles de Gaulle, 92100 Boulogne-Billancourt, France.
Clin Res Hepatol Gastroenterol. 2020 Nov;44(6):961-967. doi: 10.1016/j.clinre.2020.02.014. Epub 2020 Mar 20.
IBS patients have an impaired quality of life (QoL) and feel dissatisfaction with medical care. We aim to describe the expectations of members of the French Association of IBS patients (APSSII) concerning health care providers (HCPs) and a patients' organization.
From January to June 2013, APSSII members were asked to answer questionnaires on their expectations and experiences concerning IBS and HCP.
222/330 (67%) responded (women: 68.5%, 46.5±17.7 years, disease duration: 8.8±0.7 years, IBS-D 33.6%, IBS-C 26.7%, IBS-M 38.2%. IBS-SSS>300 in 53% and HAD score>19 in 45%). QoL impairment was correlated with disease severity and HAD score (r=-0.707 and r=-0.484, P<0.001 respectively), but not with IBS subtype. Expectations for IBS were "improved health", "better information on causes and treatments" (94%) and "better disease recognition" (86%). A significant gap was observed between expectations and experiences with HCPs. Better information, less isolation, recognition of the disease and a decrease in medical expenses were the main expectations for joining a patients' organization.
French IBS patients have a severe disease with a significant psychological impact and impaired QoL in half of the patients, certain unsatisfied expectations concerning HCP and high expectations in joining a patients' organization.
IBS 患者的生活质量（QoL）受损，对医疗保健不满意。我们旨在描述法国肠易激综合征患者协会（APSSII）成员对医疗保健提供者（HCP）和患者组织的期望。
从 2013 年 1 月至 6 月，APSSII 成员被要求回答有关 IBS 和 HCP 的期望和经验的问卷。
222/330（67%）人回答（女性：68.5%，46.5±17.7 岁，疾病持续时间：8.8±0.7 年，IBS-D 33.6%，IBS-C 26.7%，IBS-M 38.2%。53%的患者 IBS-SSS>300，45%的患者 HAD 评分>19）。QoL 受损与疾病严重程度和 HAD 评分相关（r=-0.707 和 r=-0.484，P<0.001），但与 IBS 亚型无关。对 IBS 的期望是“改善健康”、“更好地了解病因和治疗方法”（94%）和“更好地认识疾病”（86%）。观察到 HCP 与患者之间存在显著差距。更好的信息、减少孤立感、疾病的认识以及医疗费用的减少是加入患者组织的主要期望。
法国 IBS 患者的疾病严重，对心理有重大影响，半数患者的 QoL 受损，对 HCP 的某些期望未得到满足，对加入患者组织的期望较高。
