Online forum users’ views and experiences of managing irritable bowel syndrome: a qualitative analysis of discussion content

Teasdale, Emma; Clarke, H. W. J.; Chen, Nick; Everitt, Hazel

doi:10.3399/bjgpopen20x101084

Cited by 13 publications

(8 citation statements)

References 26 publications

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“…87 They often feel their symptoms are dismissed or trivialised, describe the diagnostic process as confusing, or invasive, and the often-lengthy search for efficacious treatments as frustrating. 87 89 91-95 Patients often seek information and support from multiple sources, including internet web forums, 96 and may receive conflicting, or incorrect, advice. Clinicians should aim to gain a better understanding of patients' ideas, concerns and expectations of diagnosis and management.…”

Section: Doctor-patient Communication and Patient Perspectives In Primary Carementioning

confidence: 99%

British Society of Gastroenterology guidelines on the management of irritable bowel syndrome

Vasant

Paine

Black

et al. 2021

Gut

268

334

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Irritable bowel syndrome (IBS) remains one of the most common gastrointestinal disorders seen by clinicians in both primary and secondary care. Since publication of the last British Society of Gastroenterology (BSG) guideline in 2007, substantial advances have been made in understanding its complex pathophysiology, resulting in its re-classification as a disorder of gut-brain interaction, rather than a functional gastrointestinal disorder. Moreover, there has been a considerable amount of new evidence published concerning the diagnosis, investigation and management of IBS. The primary aim of this guideline, commissioned by the BSG, is to review and summarise the current evidence to inform and guide clinical practice, by providing a practical framework for evidence-based management of patients. One of the strengths of this guideline is that the recommendations for treatment are based on evidence derived from a comprehensive search of the medical literature, which was used to inform an update of a series of trial-based and network meta-analyses assessing the efficacy of dietary, pharmacological and psychological therapies in treating IBS. Specific recommendations have been made according to the Grading of Recommendations Assessment, Development and Evaluation system, summarising both the strength of the recommendations and the overall quality of evidence. Finally, this guideline identifies novel treatments that are in development, as well as highlighting areas of unmet need for future research.

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Section: Doctor-patient Communication and Patient Perspectives In Primary Carementioning

confidence: 99%

British Society of Gastroenterology guidelines on the management of irritable bowel syndrome

Vasant

Paine

Black

et al. 2021

Gut

268

334

View full text Add to dashboard Cite

show abstract

“…The tone in the forum threads was generally very empathetic, kind and supportive. Indeed, it has already been described that the main purpose of a patient discussion in a discussion forum is to provide support and experience sharing between individuals, which is also the case here [ 11 , 16 ].…”

Section: Discussionmentioning

confidence: 97%

Analysis of the dental care queries in the “Mouth-Nose” discussion forum of the French association of patients with Gougerot-Sjögren’s syndromes and dryness

Danvers

Saide²,

Decup

et al. 2022

BMC Oral Health

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Background Primary Sjögren Syndrome is a rare autoimmune systemic disease characterized by impaired secretory functions of the exocrine gland. One of the main clinical features is dry mouth and subsequent oral diseases, which are also found in patients with Sicca. This leads to a marked deterioration in the quality of life and the patient’s search for information and solutions. Many patients turn to patients’ associations that offer moments of sharing to their members, especially through online discussion forums. Today, these forums represent quality material for a sociological or biomedical analysis of patients' concerns, as close as possible to their daily lives. Our objective is to analyze the concerns of patients with SS or Sicca regarding their dry mouth especially dental care. Methods In this cross-sectional observation study, a quantitative analysis of the Mouth-Nose online forum discussion of the French Association of Patients with Gougerot-Sjögren’s Syndromes and Dryness have been performed. After reading and re-reading, initial request themes, topics, and subtopics were established and coding was performed. Then, the 885 threads were classified depending the initial request, pragma-linguistic indices and the main topic discussed in the thread. After identifying the threads dealing with dental care, we looked at which types of care were most discussed and classified the discussions according to whether or not the patient was satisfied with their care at the dentist. Results The majority of the initial requests are posts for experiences sharing and/or advice. The topic of “dental care” is one of the main concerns of the forum users. Among the threads that concern dental care, requests to share experience with implants are in the majority. Finally, the majority of the posts on dental care relate to care in private dental practice, deals with dental implants and prevention and resulted mainly in patient satisfaction. Conclusions Analysis of the forum reveals importance of patient concerns about prevention, and care costs due to implant treatment, which add to disease burden. Most of messages relate favorable experiences with their dentists, which is in line with the approach of sharing experiences and support characteristic of a forum.

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“…In the absence of such being supplied from the healthcare provider, as is often the case, patients frequently join online forum groups for this kind of information, in addition to emotional support. Unfortunately, the information provided is not necessarily scientifically proven [ 29 ]. By providing information from approved sources to support patients, and providing an overview of therapeutic options, patients show improved adherence to a chosen treatment.…”

Section: Discussionmentioning

confidence: 99%

Patient preferences of healthcare delivery in irritable bowel syndrome: a focus group study

et al. 2021

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Background Irritable bowel syndrome (IBS) is a highly prevalent disorder with significant negative impact on quality of life of patients that results in high healthcare use and costs. Improving healthcare outcomes for IBS patients is warranted, however the exact needs of IBS patients with regard to therapy and control of symptoms are unknown. Methods Focus group interviews, using a two-stage model, were performed with twenty-three IBS patients meeting Rome III criteria and one mother of a patient, from four different regions from the Netherlands. Results Twenty-four participants were included of whom majority were female (n = 21), mean age was 43 years, and mean duration of IBS was 18 years. Five categories of patients’ perspectives were identified: clear communication, a multidisciplinary treatment team, centers of expertise, focus on scientific research and information about IBS that is widely available for patients. Conclusions Based on these findings we highlight the need for IBS care givers to take these key items into account in IBS care. These elements aid clinicians, but mostly patients, in coping and management of symptoms and subsequent healthcare outcomes, reducing overall healthcare use and costs.

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Online forum users’ views and experiences of managing irritable bowel syndrome: a qualitative analysis of discussion content

Cited by 13 publications

References 26 publications

British Society of Gastroenterology guidelines on the management of irritable bowel syndrome

British Society of Gastroenterology guidelines on the management of irritable bowel syndrome

Analysis of the dental care queries in the “Mouth-Nose” discussion forum of the French association of patients with Gougerot-Sjögren’s syndromes and dryness

Patient preferences of healthcare delivery in irritable bowel syndrome: a focus group study

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