Patients with Ulcerative Colitis Are More Concerned About Complications of Their Disease than Side Effects of Medications

Thompson, Kimberly D.; Connor, Susan J.; Walls, Danielle; Gollins, Jan; Stewart, Sabrina K.; Bewtra, Meena; Baumblatt, Geri Lynn; Holubar, Stefan D.; Greenup, Astrid-Jane; Sechi, Alexandra; Girgis, Afaf; Rubin, David T.; Siegel, Corey A.

doi:10.1097/mib.0000000000000740

Cited by 30 publications

(19 citation statements)

References 27 publications

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“…This is consistent with prior research showing knowledge deficits related to both IBD disease management and IBD complications, among AYAs with IBD, 22 and with adults with UC who reported wanting information about their disease and being concerned about long-term disease complications. 23 Other knowledge deficits in AYA patients with IBD include knowledge of how to navigate disease-related health care resources, such as medical insurance, and lack of awareness about personal health history, such as surgeries and disease localization. 21 , 22 , 24 In addition to knowledge deficits, we found limited experience with UC to be a barrier to decision making.…”

Section: Discussionmentioning

confidence: 99%

The Gray Zone: Adolescent and Young Adult Decision Support Needs for Ulcerative Colitis

Meisman

Daraiseh

Minar

et al. 2020

MDM Policy & Practice

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Purpose. To understand the medical decision support needs specific to adolescents and young adults (AYAs) with ulcerative colitis (UC) and inform development of a decision support tool addressing AYAs’ preferences. Methods. We conducted focus groups with AYAs with UC and mentors from a pediatric inflammatory bowel disease clinic’s peer mentoring program. Focus groups were led by a single trained facilitator using a semistructured guide aimed at eliciting AYAs’ roles in medical decision making and perceived decision support needs. All focus groups were audio recorded, transcribed, and coded by the research team. Data were analyzed using content analysis and the immersion crystallization method. Results. The facilitator led six focus groups: one group with peer mentors aged 18 to 24 years, three groups with patients aged 14 to 17 years, and two groups with patients aged 18 to 24 years. Decision timing and those involved in decision making were identified as interacting components of treatment decision making. Treatment decisions by AYAs were further based on timing, location (inpatient v. outpatient), and family preference for making decisions during or outside of clinic. AYAs involved parents and health care providers in medical decisions, with older participants describing themselves as “final decision makers.” Knowledge and experience were facilitators identified to participating in medical decision making. Conclusions. AYAs with UC experience changes to their roles in medical decisions over time. The support needs identified will inform the development of strategies, such as decision support tools, to help AYAs with chronic conditions develop and use skills needed for participating in medical decision making.

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Section: Discussionmentioning

confidence: 99%

The Gray Zone: Adolescent and Young Adult Decision Support Needs for Ulcerative Colitis

Meisman

Daraiseh

Minar

et al. 2020

MDM Policy & Practice

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“…The goal of SDM is that clinicians and patients will share their knowledge, values, and preferences and deliberate together on management decisions. Moreover, a recent survey suggests that most patients with UC wish to participate in SDM with their gastroenterologist when making treatment decisions [5].…”

Section: Introductionmentioning

confidence: 99%

“…The use of DAs in other chronic diseases has been associated with increased patient knowledge, less decisional conflict, and fewer patients remaining undecided or passive in the decision-making process [7]. DAs are available in various formats, ranging from simple pamphlets to elaborate videos, with web-based DAs becoming increasingly popular due to low production cost, ease of updates, and patient reliance on the internet for information [5,8].…”

Section: Introductionmentioning

confidence: 99%

Development and Feasibility of a Web-Based Decision Aid for Patients With Ulcerative Colitis: Qualitative Pilot Study

Kim¹,

Girgis²,

Cruz³

et al. 2021

J Med Internet Res

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Background Shared decision making (SDM) is becoming an important part of ulcerative colitis (UC) management because of the increasing complexity of available treatment choices and their trade-offs. The use of decision aids (DA) may be effective in increasing patients’ participation in UC management but their uptake has been limited due to high attrition rates and lack of a participatory approach to their design and implementation. Objective The primary aim of this study is to explore the perspectives of Australian patients and their clinicians regarding the feasibility and acceptability of myAID, a web-based DA, in informing treatment decisions in UC. The secondary aim is to use the findings of this pilot study to inform the design of a cluster randomized clinical trial (CRCT) to assess the efficacy of the DA compared with usual care. Methods myAID, a DA was designed and developed using a participatory approach by a multidisciplinary team of clinicians, patients, and nonmedical volunteers. A qualitative pilot study to evaluate the DA, involving patients with UC facing new treatment decisions and inflammatory bowel disease clinicians, was undertaken. Results A total of 11 patients with UC and 15 clinicians provided feedback on myAID. Themes explored included the following: Acceptability and usability of myAID—myAID was found to be acceptable by the majority of clinicians as a tool to facilitate SDM, uptake was thought to vary depending on clinicians’ approaches to patient education and practice, potential to overcome time restrictions associated with outpatient clinics was identified, presentation of unbiased information enabling patients to digest information at their own pace was noted, and potential to provoke anxiety among patients with a new diagnosis or mild disease was raised; Perceived role and usefulness of myAID—discordance was observed between patients who prioritized voicing preferences and clinicians who prioritized treatment adherence, and myAID facilitated early discussion of medical versus surgical treatment options; Target population and timing of use—greatest benefit was perceived at the time of initiating or changing treatment and following commencement of immunosuppressive therapy; and Potential concerns and areas for improvement—some perceived that use of myAID may precipitate anxiety by increasing decisional conflict and impact the therapeutic relationship between patient and the clinician and may increase resource requirements. Conclusions These preliminary findings suggest that patients and clinicians consider myAID as a feasible and acceptable tool to facilitate SDM for UC management. These pilot data have informed a participatory approach to the design of a CRCT, which will evaluate the clinical efficacy of myAID compared with usual care. Trial Registration Australian New Zealand Clinical Trial Registry ACTRN12617001246370; http://anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12617001246370.

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“…A recent survey confirmed that such a process of patient engagement or shared decision making (SDM) is desired by patients with UC [ 6 ]. SDM helps the doctor and the patient to collaborate on management decisions, which can lead to improved quality of life (QoL) and likelihood of achieving health goals, while lowering the demand for health care resources and improving patients’ health care experience [ 7 ].…”

Section: Introductionmentioning

confidence: 99%

“…A recent Cochrane review indicates that their use in other chronic diseases can improve patient knowledge and reduce decisional conflict and the number of patients remaining undecided or being passive in the decision-making process [ 11 ]. With increasing acceptance and familiarity of online tools, Web-based DAs are gaining popularity [ 6 , 12 , 13 ].…”

Section: Introductionmentioning

confidence: 99%

A Web-Based Decision Aid (myAID) to Enhance Quality of Life, Empowerment, Decision Making, and Disease Control for Patients With Ulcerative Colitis: Protocol for a Cluster Randomized Controlled Trial

Kim¹,

Girgis²,

Karimi³

et al. 2020

JMIR Res Protoc

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Background Patients with ulcerative colitis (UC) often face complex treatment decisions. Although shared decision making (SDM) is considered important, tools to facilitate this are currently lacking for UC. A recent pilot study of a novel Web-based decision aid (DA), my Actively Informed Decision (myAID), has suggested its acceptability and feasibility for informing treatment decisions and facilitating SDM in clinical practice. Objective This paper describes the study protocol of the myAID study to assess the clinical impact of systematic implementation of myAID in routine UC management. Methods The myAID study is a multicenter, cluster randomized controlled trial (CRCT) involving 22 Australian sites that will assess the clinical efficacy of routine use of myAID (intervention) against usual care without access to myAID (control) for UC patients. Participating sites (clusters) will be randomly allocated in a 1:1 ratio between the 2 arms. Patients making a new treatment decision beyond 5-aminosalicylate agents will be eligible to participate. Patients allocated to the intervention arm will view myAID at the time of recruitment and have free access to it throughout the study period. The effect of the myAID intervention will be assessed using the results of serial Web-based questionnaires and fecal calprotectin at baseline, 2 months, 6 months, and 12 months. A Web-based questionnaire within 2-4 weeks of referral will determine early change in quality of decision making and anxiety (both arms) and intervention acceptability (intervention arm only). Results Study recruitment and funding began in October 2016, and recruitment will continue through 2020, for a minimum of 300 study participants at baseline at the current projection. The primary outcome will be health-related quality of life (Assessment of Quality of Life-8D), and secondary outcomes will include patient empowerment, quality of decision making, anxiety, work productivity and activity impairment, and disease activity. In addition, we aim to determine the predictors of UC treatment decisions and outcomes and the cost-effectiveness of implementing myAID in routine practice. Feedback obtained about myAID will be used to determine areas for improvement and barriers to its implementation. Completion of data collection and publication of study results are anticipated in 2021. Conclusions myAID is a novel Web-based DA designed to facilitate SDM in UC management. The results of this CRCT will contribute new evidence to the literature in comparing outcomes between patients who routinely access such decision support intervention versus those who do not, across multiple large inflammatory bowel disease centers as well as community-based private practices in Australia. Trial Registration Australian New Zealand Clinical Trial Registry ACTRN12617001246370 http://anzctr.org.au/Trial/ Registration/TrialReview.aspx?ACTRN=12617001246370 International Registered Report Identifier (IRRID) DERR1-10.2196/15994

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Patients with Ulcerative Colitis Are More Concerned About Complications of Their Disease than Side Effects of Medications

Abstract: To facilitate informed treatment decisions for UC patients, in addition to reviewing the benefits and risks of medications, it is also important to discuss the best strategies for decreasing the risk of colectomy and colorectal cancer.

Cited by 30 publications

References 27 publications

The Gray Zone: Adolescent and Young Adult Decision Support Needs for Ulcerative Colitis

The Gray Zone: Adolescent and Young Adult Decision Support Needs for Ulcerative Colitis

Development and Feasibility of a Web-Based Decision Aid for Patients With Ulcerative Colitis: Qualitative Pilot Study

A Web-Based Decision Aid (myAID) to Enhance Quality of Life, Empowerment, Decision Making, and Disease Control for Patients With Ulcerative Colitis: Protocol for a Cluster Randomized Controlled Trial

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