Dataset Information

The Use of Online Health Forums by Patients With Chronic Cough: Qualitative Study.

ABSTRACT: BACKGROUND:Online health discussion forums are used by different patient groups for sharing advice and information. Chronic cough is a common problem, and people with chronic cough use online health forums alongside formal medical therapies. OBJECTIVE:The objective of this study was to assess how chronic cough sufferers use online health forums, including the treatment advice they share with one another and the possible clinical uses of online forums in chronic cough. METHODS:Three open-access health forums were searched for threads related to chronic cough. Identified threads were screened against inclusion and exclusion criteria adapted from the British Thoracic Society (BTS) Guidelines related to chronic cough diagnosis. Included data were subjected to qualitative thematic analysis. All study data were cross-validated by a second author and discrepancies were resolved. RESULTS:In total, 96 threads were included in the analysis, consisting of posts by 223 forum users. Three main themes were identified: the effect of chronic cough on the lives of patients, the treatment advice shared between users, and the provision of support within forums. CONCLUSIONS:Chronic cough symptoms had impacts on multiple aspects of patients' health and well-being. To try and combat these issues, forum users suggested a variety of treatments to one another, ranging from mainstream traditional therapies to odd alternative remedies. The provision of support and empathy were also prominent themes in discussion threads. Online forums themselves may provide increasing benefit to users through the addition of a moderator.

SUBMITTER: Sinha A

PROVIDER: S-EPMC5803533 | biostudies-literature | 2018 Jan

REPOSITORIES: biostudies-literature

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The Use of Online Health Forums by Patients With Chronic Cough: Qualitative Study.

Sinha Ashnish A Porter Tom T Wilson Andrew A

Journal of medical Internet research 20180124 1

<h4>Background</h4>Online health discussion forums are used by different patient groups for sharing advice and information. Chronic cough is a common problem, and people with chronic cough use online health forums alongside formal medical therapies.<h4>Objective</h4>The objective of this study was to assess how chronic cough sufferers use online health forums, including the treatment advice they share with one another and the possible clinical uses of online forums in chronic cough.<h4>Methods</ ...[more]

PMID: 29367181

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Project description:BackgroundTelehealth and online health information provide patients with increased access to healthcare services and health information in chronic disease management of older patients with chronic diseases, addressing the challenge of inadequate health resources and promoting active and informed participation of older patients in chronic disease management. There are few qualitative studies on the application of telehealth and online health information to chronic disease management in older patients. Chronic obstructive pulmonary disease is one of the most common chronic diseases in older adults. Telehealth is widely used in the management of chronic obstructive pulmonary disease. The purpose of this study was to explore the perceptions and experiences of older patients and healthcare providers in the application of telehealth and online health information to chronic disease management of chronic obstructive pulmonary disease.MethodsA qualitative descriptive study with data generated from 52 individual semi-structured interviews with 29 patients [Law of the People's Republic of China on the protection of the rights and interests of older people (2018 Revised Version) = >60 years old] with chronic obstructive pulmonary disease and 23 healthcare providers. The inductive thematic analysis method was used for data analysis.ResultsFour themes and 16 sub-themes were identified in this study. Four themes included: faced with a vast amount of online health information, essential competencies and personality traits ensuring older patients' participation and sustained use, user experience with the use of technology, being in a complex social context.ConclusionThe ability of patients to understand health information should be fully considered while facilitating access to online health information for older patients. The role of health responsibility and user experience in older patients' participation and sustained use of telehealth and online health information needs to be emphasised. In addition, the complex social context is a determining factor to be considered, particularly the complex impact of a reliance on offspring and social prejudice on the behaviour of older adults using telehealth and online health information.

Project description:BackgroundPrevious research has demonstrated the importance of search engines, websites, online discussion groups and social media groups for women in developed countries looking for health and medical information, but few studies have focused on Australian women. The Australian Women and Digital Health Project was designed to investigate how Australian women from a range of age groups and locations used digital health technologies across the full spectrum available to them. The findings on their use of online information and decision-making in relation to seeking face-to-face medical advice are discussed in this article.MethodsQualitative research, including focus group discussions (24 participants) and face-to-face (12 participants) and telephone (30 participants) semi-structured interviews was conducted with a total of 66 Australian women aged between 21 and 74. The focus groups and interviews were transcribed and analysed using inductive thematic analysis sensitised by a feminist new materialism theoretical standpoint. This involved identifying the dimensions of affordances, relational connections, affective forces and agential capacities in the women's accounts.ResultsAll participants regularly used online sources to find health information, advice and support. We identified six key agential capacities relating to these ways in which the women enacted online health information seeking: 1) self-screening; 2) preparing for and following up a consultation; 3) selective engagement; 4) caring for others; 5) creating and sharing new information; and 6) challenging medical authority. The affordances of accessibility and convenience of online sources, relational connections between women and trusted sources (both online and offline) and between women and family members on whose behalf they sought information and affective forces such as trust, the need for reassurance and frustration and anger with deficient healthcare services contributed to these capacities.ConclusionsWomen engaged in complex interactions with online information, actively and creatively using it in diverse ways in their negotiations with seeking face-to-face medical expertise. Their online practices generated a set of agential capacities that help them to assess whether they or their family members need medical attention, supplement or challenge the medical advice they have already received or generate and share their own information.

Project description:BackgroundPerinatal mental illness is a global health concern; however, many women with the illness do not get the treatment they need to recover. Interventions that reduce the stigma around perinatal mental illness have the potential to enable women to disclose their symptoms to health care providers and consequently access treatment. There are many online forums for perinatal mental illness and thousands of women use them. Preliminary research suggests that online forums may promote help-seeking behavior, potentially because they have a role in challenging stigma. This study draws from these findings and theoretical concepts to present a model of forum use, stigma, and disclosure.ObjectiveThis study tested a model that measured the mediating role of stigma between online forum use and disclosure of affective symptoms to health care providers.MethodsA Web-based survey of 200 women who were pregnant or had a child younger than 5 years and considered themselves to be experiencing psychological distress was conducted. Women were recruited through social media and questions measured forum usage, perinatal mental illness stigma, disclosure to health care providers, depression and anxiety symptoms, barriers to disclosure, and demographic information.ResultsThere was a significant positive indirect effect of length of forum use on disclosure of symptoms through internal stigma, b=0.40, bias-corrected and accelerated (BCa) 95% CI 0.13-0.85. Long-term forum users reported higher levels of internal stigma, and higher internal stigma was associated with disclosure of symptoms to health care providers when controlling for symptoms of depression and anxiety.ConclusionsInternal stigma mediates the relationship between length of forum use and disclosure to health care providers. Findings suggest that forums have the potential to enable women to recognize and reveal their internal stigma, which may in turn lead to greater disclosure of symptoms to health care providers. Clinicians could refer clients to trustworthy and moderated online forums that facilitate expression of perinatal mental illness stigma and promote disclosure to health care providers.

Project description:BACKGROUND:Chronic kidney disease (CKD) is a major global health burden, and is associated with increased adverse outcomes, poor quality of life, and substantial health care costs. While there is an increasing need to build patient-centered pathways for improving CKD management in clinical care, data in this field are scarce. OBJECTIVE:The aim of this study was to understand patient-reported experiences, symptoms, outcomes, and treatment journeys among patients with CKD through a retrospective and qualitative approach based on data available through PatientsLikeMe (PLM), an online community where patients can connect and share experiences. METHODS:Adult members (aged ?18 years) with self-reported CKD within 30 days of enrollment, who were not on dialysis, and registered between 2011 and 2018 in the PLM community were eligible for the retrospective study. Patient demographics and disease characteristics/symptoms were collected from this retrospective data set. Qualitative data were collected prospectively through semistructured phone interviews in a subset of patients, and questions were oriented to better understand patients' experiences with CKD and its management. RESULTS:The retrospective data set included 1848 eligible patients with CKD, and median age was 56 years. The majority of patients were female (1217/1841, 66.11%) and most were US residents (1450/1661, 87.30%). Of the patients who reported comorbidities (n=1374), the most common were type 2 diabetes (783/1374, 56.99%), hypertension (664/1374, 48.33%), hypercholesterolemia (439/1374, 31.95%), and diabetic neuropathy (376/1374, 27.37%). The most commonly reported severe or moderate symptoms in patients reporting these symptoms were fatigue (347/484, 71.7%) and pain (278/476, 58.4%). In the qualitative study, 18 eligible patients (13 females) with a median age of 60 years and who were mainly US residents were interviewed. Three key concepts were identified by patients to be important to optimal care and management: listening to patient needs, coordinating health care across providers, and managing clinical care. CONCLUSIONS:This study provides a unique source of real-world information on the patient experience of CKD and its management by utilizing the PLM network. The results reveal the challenges these patients face living with an array of symptoms, and report key concepts identified by patients that can be used to further improve clinical care and management and inform future CKD studies.

Project description:BackgroundPatient portals have the potential to support self-management for chronic diseases and improve health outcomes. With the rapid rise in adoption of patient portals spurred by meaningful use incentives among safety net health systems (a health system or hospital providing a significant level of care to low-income, uninsured, and vulnerable populations), it is important to understand the readiness and willingness of patients and caregivers in safety net settings to access their personal health records online.ObjectiveTo explore patient and caregiver perspectives on online patient portal use before its implementation at San Francisco General Hospital, a safety net hospital.MethodsWe conducted 16 in-depth interviews with chronic disease patients and caregivers who expressed interest in using the Internet to manage their health. Discussions focused on health care experiences, technology use, and interest in using an online portal to manage health tasks. We used open coding to categorize all the barriers and facilitators to portal use, followed by a second round of coding that compared the categories to previously published findings. In secondary analyses, we also examined specific barriers among 2 subgroups: those with limited health literacy and caregivers.ResultsWe interviewed 11 patients and 5 caregivers. Patients were predominantly male (82%, 9/11) and African American (45%, 5/11). All patients had been diagnosed with diabetes and the majority had limited health literacy (73%, 8/11). The majority of caregivers were female (80%, 4/5), African American (60%, 3/5), caregivers of individuals with diabetes (60%, 3/5), and had adequate health literacy (60%, 3/5). A total of 88% (14/16) of participants reported interest in using the portal after viewing a prototype. Major perceived barriers included security concerns, lack of technical skills/interest, and preference for in-person communication. Facilitators to portal use included convenience, health monitoring, and improvements in patient-provider communication. Participants with limited health literacy discussed more fundamental barriers to portal use, including challenges with reading and typing, personal experience with online security breaches/viruses, and distrust of potential security measures. Caregivers expressed high interest in portal use to support their roles in interpreting health information, advocating for quality care, and managing health behaviors and medical care.ConclusionsDespite concerns about security, difficulty understanding medical information, and satisfaction with current communication processes, respondents generally expressed enthusiasm about portal use. Our findings suggest a strong need for training and support to assist vulnerable patients with portal registration and use, particularly those with limited health literacy. Efforts to encourage portal use among vulnerable patients should directly address health literacy and security/privacy issues and support access for caregivers.

Project description:BACKGROUND:The pathogenesis of chronic cough is not well understood and treatment options are limited. In this study we sought to explore the current understanding and management of chronic cough across an international group of specialists. METHODS:This was an international study of cross sectional qualitative design. In depth interviews were carried out with "Respiratory Specialists" experienced in treating treating Chronic Obstructive Pulmonary Disease (COPD), idiopathic pulmonary fibrosis (IPF), idiopathic chronic cough (ICC) and/or lung cancer patients and with "Disease Experts" in the field of Chronic Cough. Participants in the study were recruited from the USA, UK, Germany, Ireland, Australia and Japan. Interviews with specialists were held at research facilities and with DEs over the telephone. These were preceded by the specialists completing case records of patients recently seen. All interviews were conducted by native speaking trained moderators using a semi-structured interview guide script. This was designed to elicit the definition of chronic cough, explore the unmet needs for each disease state, define therapy goals, identify patient phenotypes and give an overview of the treatment pathway. RESULTS:76 specialists and 10 experts took part in the study. Over two thirds (70%) of respondents defined chronic cough as "cough lasting more than 8/12 weeks" (range 2 weeks to 2 years). Physicians emphasised three interdependent aspects of clinical assessment: impact on quality of life, type of cough (productive versus non-productive) and the underlying pathology. Specialists emphasised treating the underlying cause rather than the cough, this being most prominent in Japan. Experts as a group focussed on chronic cough independently. Evaluation of the respiratory system, GI tract and upper airway (ENT) for establishing an underlying cause was recommended. Type of cough (productive vs non-productive) and impact on quality of life influenced treatment initiation. 33% of patients with ICC were prescribed anti-tussives. With associated diagnoses of COPD, IPF or lung cancer the emphasis was on treating the underlying condition. Alternatives to pharmacological treatments were frequently considered. CONCLUSION:There is significant international variation in our understanding and management of chronic cough. Further work is required to bring forth clear guidance and effective medicines for these patients.

Dataset Information

The Use of Online Health Forums by Patients With Chronic Cough: Qualitative Study.

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The Use of Online Health Forums by Patients With Chronic Cough: Qualitative Study.

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