Marco Richard Zugaj, Claudia Busch, Andrea Züger, Jens Keßler
{"title":"慢性单纯性疾病的经验:一项定性访谈研究。","authors":"Marco Richard Zugaj, Claudia Busch, Andrea Züger, Jens Keßler","doi":"10.1186/s13023-025-03619-1","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Chronic singultus lasting longer than one month is a rare disease. Due to its low prevalence, generating evidence about it is difficult. Patients with chronic diseases struggle with considerable restrictions in their quality of life. Chronic hiccups can lead to problems such as insomnia, anorexia, fatigue, exhaustion, weight loss, and depression. The aim of this study was to gain a better understanding of the quality of life of patients with chronic singultus and their experiences in contact with the healthcare system and with the general population.</p><p><strong>Methods: </strong>The data were collected using semi-structured interviews. The data analysis was carried out using qualitative structuring content analysis according to Kuckartz and Rädiker. Reliability was ensured by joint interprofessional evaluation of the interviews by experts, considering different perspectives.</p><p><strong>Results: </strong>Interviews from 20 patients with chronic singultus were analyzed. Analysis yielded 43 categories that could be assigned to five main topics. The disease burden of the patients was high. In addition to physical symptoms such as concomitant gastroenterological symptoms, shortness of breath, and fatigue, psychosocial consequences such as shame, social withdrawal, anxiety, depression, and even suicidality led to reduced quality of life.</p><p><strong>Conclusions: </strong>Ignorance and helplessness among healthcare stakeholders in the case of chronic singultus could lead to a marginalization of the disease and patients. Referring patients to a center with the appropriate expertise can help to avoid underuse, overuse, or misuse of healthcare. Therefore, the awareness of the disease among stakeholders must raise.</p>","PeriodicalId":19651,"journal":{"name":"Orphanet Journal of Rare Diseases","volume":"20 1","pages":"141"},"PeriodicalIF":3.4000,"publicationDate":"2025-03-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11930004/pdf/","citationCount":"0","resultStr":"{\"title\":\"Experience of illness with chronic singultus: a qualitative interview study.\",\"authors\":\"Marco Richard Zugaj, Claudia Busch, Andrea Züger, Jens Keßler\",\"doi\":\"10.1186/s13023-025-03619-1\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Chronic singultus lasting longer than one month is a rare disease. Due to its low prevalence, generating evidence about it is difficult. Patients with chronic diseases struggle with considerable restrictions in their quality of life. Chronic hiccups can lead to problems such as insomnia, anorexia, fatigue, exhaustion, weight loss, and depression. The aim of this study was to gain a better understanding of the quality of life of patients with chronic singultus and their experiences in contact with the healthcare system and with the general population.</p><p><strong>Methods: </strong>The data were collected using semi-structured interviews. The data analysis was carried out using qualitative structuring content analysis according to Kuckartz and Rädiker. Reliability was ensured by joint interprofessional evaluation of the interviews by experts, considering different perspectives.</p><p><strong>Results: </strong>Interviews from 20 patients with chronic singultus were analyzed. Analysis yielded 43 categories that could be assigned to five main topics. The disease burden of the patients was high. In addition to physical symptoms such as concomitant gastroenterological symptoms, shortness of breath, and fatigue, psychosocial consequences such as shame, social withdrawal, anxiety, depression, and even suicidality led to reduced quality of life.</p><p><strong>Conclusions: </strong>Ignorance and helplessness among healthcare stakeholders in the case of chronic singultus could lead to a marginalization of the disease and patients. Referring patients to a center with the appropriate expertise can help to avoid underuse, overuse, or misuse of healthcare. Therefore, the awareness of the disease among stakeholders must raise.</p>\",\"PeriodicalId\":19651,\"journal\":{\"name\":\"Orphanet Journal of Rare Diseases\",\"volume\":\"20 1\",\"pages\":\"141\"},\"PeriodicalIF\":3.4000,\"publicationDate\":\"2025-03-22\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11930004/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Orphanet Journal of Rare Diseases\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1186/s13023-025-03619-1\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"GENETICS & HEREDITY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Orphanet Journal of Rare Diseases","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1186/s13023-025-03619-1","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"GENETICS & HEREDITY","Score":null,"Total":0}
Experience of illness with chronic singultus: a qualitative interview study.
Background: Chronic singultus lasting longer than one month is a rare disease. Due to its low prevalence, generating evidence about it is difficult. Patients with chronic diseases struggle with considerable restrictions in their quality of life. Chronic hiccups can lead to problems such as insomnia, anorexia, fatigue, exhaustion, weight loss, and depression. The aim of this study was to gain a better understanding of the quality of life of patients with chronic singultus and their experiences in contact with the healthcare system and with the general population.
Methods: The data were collected using semi-structured interviews. The data analysis was carried out using qualitative structuring content analysis according to Kuckartz and Rädiker. Reliability was ensured by joint interprofessional evaluation of the interviews by experts, considering different perspectives.
Results: Interviews from 20 patients with chronic singultus were analyzed. Analysis yielded 43 categories that could be assigned to five main topics. The disease burden of the patients was high. In addition to physical symptoms such as concomitant gastroenterological symptoms, shortness of breath, and fatigue, psychosocial consequences such as shame, social withdrawal, anxiety, depression, and even suicidality led to reduced quality of life.
Conclusions: Ignorance and helplessness among healthcare stakeholders in the case of chronic singultus could lead to a marginalization of the disease and patients. Referring patients to a center with the appropriate expertise can help to avoid underuse, overuse, or misuse of healthcare. Therefore, the awareness of the disease among stakeholders must raise.
期刊介绍:
Orphanet Journal of Rare Diseases is an open access, peer-reviewed journal that encompasses all aspects of rare diseases and orphan drugs. The journal publishes high-quality reviews on specific rare diseases. In addition, the journal may consider articles on clinical trial outcome reports, either positive or negative, and articles on public health issues in the field of rare diseases and orphan drugs. The journal does not accept case reports.