Self-Management Techniques in IBD

Keefer, Laurie; Kane, Sunanda V.

doi:10.1007/978-3-319-22285-1_5

Cited by 8 publications

(6 citation statements)

References 85 publications

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“…The increased focus on psychological aspects of the disease has also been found in other studies of PROs [40][41][42]. In addition, the digital PRO's focus on extraintestinal symptoms was found to lead to a small increase in health literacy among some of the participants, which could support self-management [43]. However, patients' increased awareness of symptoms, both regarding mental health, abdominal pain and others, had some negative aspects.…”

Section: Discussionsupporting

confidence: 63%

Patient perspectives on digital patient reported outcomes in routine care of inflammatory bowel disease

Nielsen

Appel

Larsen

et al. 2021

J Patient Rep Outcomes

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Background Digital patient reported outcomes are used increasingly in daily care and treatment of inflammatory bowel disease. Their purpose includes increased focus on patient wellbeing, reduction in avoidable follow-up consultations and increased patient self-management. However, implementation issues occur and studies indicate patients may have concerns, particularly regarding having fewer face-to-face consultations. This study aims to explore patients’ perspectives of use and non-use of digital patient reported outcomes and to understand the mechanisms underpinning patient reluctance to engage with this health technology. Results Sixteen patients with inflammatory bowel disease at a regional hospital in Denmark were interviewed about their experiences of, and perspectives on, digital patient reported outcomes. A certain level of eHealth literacy was found to be a fundamental condition for use, while other factors were barriers or facilitators for use of digital PROs. Patients’ main concerns were about potential consequences for their care and relationship with the clinic. Most patients in stable remission were satisfied with the hospital being a “life-line” if their symptoms worsened, and perceived digital patient reported outcomes to be an efficient tool to establish that “life-line”. Patients with severe symptoms and a high degree of emotional distress related to their disease valued the potential for digital patient reported outcomes to increase their clinicians’ focus on mental health and extra-intestinal symptoms. Conclusion This study found that if patients had sufficient digital literacy, they perceived digital patient reported outcomes to be a useful replacement for face-to-face consultations. However, they were concerned about digital patient reported outcomes’ effect on the patient–clinician relationship and its ability to detect worsening of symptoms. These concerns may be mitigated by good patient–clinician relationships, and the option for patients to maintain direct telephone contact with their gastroenterology specialist.

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Section: Discussionsupporting

confidence: 63%

Patient perspectives on digital patient reported outcomes in routine care of inflammatory bowel disease

Nielsen

Appel

Larsen

et al. 2021

J Patient Rep Outcomes

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“…This finding is surprising given the high degree of involvement typically associated with managing IBD, such as regular medical appointments. 22,32 One reason for this could be that we only allowed participants to provide information for up to five alters and that healthcare workers may still play a peripheral yet key role in HDNs among this sample. Regardless, GI clinicians should continually strive to improve on patient-provider communication skills and relationships to benefit IBD self-management outcomes.…”

Section: Discussionmentioning

confidence: 99%

Health discussion network characteristics among a sample of people with inflammatory bowel disease

2023

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Objectives This study examined the health discussion networks (HDNs) of people with inflammatory bowel disease (IBD). We sought to test if HDN characteristics were associated with IBD management self-efficacy outcomes. Methods We recruited a sample of adults with IBD ( N = 112) in December 2020 to take an online survey. Participants listed up to five people (alters) who they discussed their health with, and we used those data to construct individual HDNs. Participants provided demographic information about alters, and characterized alter by relationship, closeness, and support provided. We used multivariable regression to examine associations of HDN characteristics with IBD symptoms, remission, and emotions management self-efficacy outcomes. Results Participants reported data for 412 alters (mean HDN size: 3.68). Alters were mostly friends (40%) or family members (36%); few were healthcare workers (6%). In multivariable analyses, HDN size was associated with remission and emotions management self-efficacy ( ps < .05), and the amount of support offered by alters was associated with emotions management self-efficacy ( p < .05). Discussion HDN size and alter support variables were associated with some IBD management self-efficacy outcomes among our study sample. These findings provide empirical evidence about HDNs among people with IBD and support the notion that disease management is a collective effort.

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“…Overall, there is some evidence for an inverse relationship between social support and psychological symptoms (Research Question 1). Although a wide variety of self‐management behaviors were described among the eight studies, the systematic review did not identify commonly used IBD self‐management behaviors such as diet modification, stress management, or physical activity (Conley & Redeker, ; Kane, ; Keefer & Kane, ). Even though individuals with IBD face a variety of gastrointestinal and systemic symptoms, this review did not identify any studies focusing on gastrointestinal symptoms.…”

Section: Discussionmentioning

confidence: 99%

Systematic Review of Social Support on Psychological Symptoms and Self‐Management Behaviors Among Adults With Inflammatory Bowel Disease

Kamp

West

Holmstrom

et al. 2019

J of Nursing Scholarship

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Purpose The purpose was to determine the relationship between social support, psychological symptoms and self‐management behaviors among adults with inflammatory bowel disease (IBD) and examine the influence of types of social support and patient age. Design This was a systematic review. PubMed, Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Communication and Mass Media Complete, and Communication Abstracts were searched. Publication dates were limited to January 2000 to August 2018. Methods The systematic review was guided by the Preferred Reporting Items for Systematic Reviews and Meta‐Analysis statement, and quality was appraised based on the Critical Appraisal Skills Programme for cohort studies tool. The data were synthesized using narrative synthesis techniques. Findings The literature review yielded 458 results. Eight articles met inclusion criteria. Articles utilized a variety of conceptualizations of both social support and self‐management behaviors, making comparisons difficult. Findings demonstrated an inverse relationship between social support and psychological symptoms, and in one study only when social support buffered high stress. Studies with significant relationships between age and self‐management behaviors indicated that a lower age was associated with decreased self‐management behaviors. Conclusions Social support has the potential to influence psychological symptoms among patients with IBD. Future research should examine types of social support (i.e., emotional, informational, and tangible support) and measure levels of received social support. Clinical Relevance Social support may serve as a modifiable factor to improve psychological symptoms among adults with IBD. Younger adults (age <40 years) may benefit from specialized interventions to address self‐management behaviors.

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Self-Management Techniques in IBD

Cited by 8 publications

References 85 publications

Patient perspectives on digital patient reported outcomes in routine care of inflammatory bowel disease

Patient perspectives on digital patient reported outcomes in routine care of inflammatory bowel disease

Health discussion network characteristics among a sample of people with inflammatory bowel disease

Systematic Review of Social Support on Psychological Symptoms and Self‐Management Behaviors Among Adults With Inflammatory Bowel Disease

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