scholarly journals P077 What matters to Ulcerative Colitis patients when they make treatment decisions? A systematic review

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S180-S180
Author(s):  
A M Folan ◽  
G Jones ◽  
D Baker ◽  
S Brown ◽  
M Lee ◽  
...  
Keyword(s):  
Systematic Review ◽  
Ulcerative Colitis ◽  
Decision Making ◽  
Mixed Methods ◽  
Elective Surgery ◽  
Treatment Decisions ◽  
Physical Symptoms ◽  
Adherence To Medication ◽  
What Matters

Abstract Background The decision for ulcerative colitis (UC) patients to opt for elective surgery or continue medical treatment is dependent on patient preferences taking into account a range of factors. In addition to choosing between medical and surgical treatment, patients undergoing elective surgery are presented with a further decision regarding which operation to choose. The aim of this systematic review is to identify and understand what matters to UC patients when they are making these decisions. Methods Five electronic databases (PubMed, Scopus, CINAHL, Medline, and Embase) were searched for relevant literature up to 15 October 2020. Qualitative, quantitative and mixed-methods studies were included in this review. Studies reporting on what was important to UC patients (over 16 years of age) when they make treatment decisions were included. The Mixed Methods Appraisal Tool was used to assess the quality of the papers. Thematic analysis was used to analyse the data. Results The searches identified 6,917 papers and a final 19 (eight quantitative, seven qualitative, four mixed methods) papers were included. All studies were published since 2007 and included a total of 3,328 participants from nine countries. Five overarching themes (and their associated 20 sub-themes) were generated to describe the factors reported as important to UC patients in making treatment decisions. These were: 1. Information provision (information content, knowledge about their illness, quality of information); 2. Impact of the treatment upon daily life (controlling physical symptoms, quality of life); 3. Levels of risk (trade-off, high risk, concern and worry); 4. Burden of treatment (the need to see benefits of medication, route and size of medication, side effects, dosing frequency, costs, effort of being the patient, adherence to medication, surgery concerns, timing of surgery); and 5. Patient-clinician relationship (shared decision-making, communication, mismatch between what clinicians and patients consider to be important). Conclusion Communication between patients and their IBD teams should take into account the range of factors that influence their treatment decision making. Decision support interventions that incorporate such factors may better support the patient-clinician relationship and improve knowledge of treatment options and how these impact on what matters to them. Future studies are needed to determine which factors identified in this review are dominant.

scholarly journals 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

10.2196/15994 ◽  
2020 ◽  
Vol 9 (7) ◽  
pp. e15994
Author(s):  
Andrew H Kim ◽  
Afaf Girgis ◽  
Neda Karimi ◽  
Alexandra J Sechi ◽  
Joseph Descallar ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ulcerative Colitis ◽  
Decision Making ◽  
Decision Aid ◽  
Controlled Trial ◽  
Treatment Decisions ◽  
Web Based ◽  
Randomized Controlled ◽  
Cluster Randomized

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

scholarly journals 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 (Preprint)

2019 ◽  
Author(s):  
Andrew H Kim ◽  
Afaf Girgis ◽  
Neda Karimi ◽  
Alexandra J Sechi ◽  
Joseph Descallar ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ulcerative Colitis ◽  
Decision Making ◽  
Decision Aid ◽  
Controlled Trial ◽  
Treatment Decisions ◽  
Web Based ◽  
Randomized Controlled ◽  
Cluster Randomized

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. CLINICALTRIAL Australian New Zealand Clinical Trial Registry ACTRN12617001246370 http://anzctr.org.au/Trial/ Registration/TrialReview.aspx?ACTRN=12617001246370 INTERNATIONAL REGISTERED REPORT DERR1-10.2196/15994

scholarly journals Toward the Development of a Comprehensive Clinically Oriented Patient Profile: A Systematic Review of the Purpose, Characteristic, and Methodological Quality of Classification Systems of Adult Spinal Deformity

Neurosurgery ◽  
2021 ◽  
Author(s):  
Kenny Yat Hong Kwan ◽  
J Naresh-Babu ◽  
Wilco Jacobs ◽  
Marinus de Kleuver ◽  
David W Polly ◽  
...  
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Classification System ◽  
Methodological Quality ◽  
Literature Search ◽  
Adult Spinal Deformity ◽  
Classification Systems ◽  
Systematic Literature Search ◽  
Patient Profile

Abstract BACKGROUND Existing adult spinal deformity (ASD) classification systems are based on radiological parameters but management of ASD patients requires a holistic approach. A comprehensive clinically oriented patient profile and classification of ASD that can guide decision-making and correlate with patient outcomes is lacking. OBJECTIVE To perform a systematic review to determine the purpose, characteristic, and methodological quality of classification systems currently used in ASD. METHODS A systematic literature search was conducted in MEDLINE, EMBASE, CINAHL, and Web of Science for literature published between January 2000 and October 2018. From the included studies, list of classification systems, their methodological measurement properties, and correlation with treatment outcomes were analyzed. RESULTS Out of 4470 screened references, 163 were included, and 54 different classification systems for ASD were identified. The most commonly used was the Scoliosis Research Society-Schwab classification system. A total of 35 classifications were based on radiological parameters, and no correlation was found between any classification system levels with patient-related outcomes. Limited evidence of limited quality was available on methodological quality of the classification systems. For studies that reported the data, intraobserver and interobserver reliability were good (kappa = 0.8). CONCLUSION This systematic literature search revealed that current classification systems in clinical use neither include a comprehensive set of dimensions relevant to decision-making nor did they correlate with outcomes. A classification system comprising a core set of patient-related, radiological, and etiological characteristics relevant to the management of ASD is needed.

scholarly journals Communication in decision aids for stage I–III colorectal cancer patients: a systematic review

BMJ Open ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. e044472
Author(s):  
Saar Hommes ◽  
Ruben Vromans ◽  
Felix Clouth ◽  
Xander Verbeek ◽  
Ignace de Hingh ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Systematic Review ◽  
Decision Making ◽  
Systematic Reviews ◽  
Decision Aids ◽  
Specific Treatment ◽  
Cochrane Library ◽  
Plain Language ◽  
Patient Decision

ObjectivesTo assess the communicative quality of colorectal cancer patient decision aids (DAs) about treatment options, the current systematic review was conducted.DesignSystematic review.Data sourcesDAs (published between 2006 and 2019) were identified through academic literature (MEDLINE, Embase, CINAHL, Cochrane Library and PsycINFO) and online sources.Eligibility criteriaDAs were only included if they supported the decision-making process of patients with colon, rectal or colorectal cancer in stages I–III.Data extraction and synthesisAfter the search strategy was adapted from similar systematic reviews and checked by a colorectal cancer surgeon, two independent reviewers screened and selected the articles. After initial screening, disagreements were resolved with a third reviewer. The review was conducted in concordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. DAs were assessed using the International Patient Decision Aid Standards (IPDAS) and Communicative Aspects (CA) checklist.ResultsIn total, 18 DAs were selected. Both the IPDAS and CA checklist revealed that there was a lot of variation in the (communicative) quality of DAs. The findings highlight that (1) personalisation of treatment information in DAs is lacking, (2) outcome probability information is mostly communicated verbally and (3) information in DAs is generally biased towards a specific treatment. Additionally, (4) DAs about colorectal cancer are lengthy and (5) many DAs are not written in plain language.ConclusionsBoth instruments (IPDAS and CA) revealed great variation in the (communicative) quality of colorectal cancer DAs. Developers of patient DAs should focus on personalisation techniques and could use both the IPDAS and CA checklist in the developmental process to ensure personalised health communication and facilitate shared decision making in clinical practice.

scholarly journals Psychosocial influences on help-seeking behaviour for cancer in low-income and lower middle-income countries: a mixed-methods systematic review

2021 ◽  
Vol 6 (2) ◽  
pp. e004213
Author(s):  
Grace McCutchan ◽  
Bahr Weiss ◽  
Harriet Quinn-Scoggins ◽  
Anh Dao ◽  
Tom Downs ◽  
...  
Keyword(s):  
Systematic Review ◽  
Mixed Methods ◽  
Cancer Treatment ◽  
Help Seeking ◽  
Middle Income ◽  
Cancer Symptoms ◽  
Middle Income Countries ◽  
Help Seeking Behaviour ◽  
Psychosocial Influences

IntroductionStarting cancer treatment early can improve outcomes. Psychosocial factors influencing patients’ medical help-seeking decisions may be particularly important in low and lower middle-income countries (LMIC) where cancer outcomes are poor. Comprehensive review evidence is needed to understand the psychosocial influences on medical help-seeking for cancer symptoms, attendance for diagnosis and starting cancer treatment.MethodsMixed-methods systematic review registered on PROSPERO (CRD42018099057). Peer-reviewed databases were searched until April 2020 for studies assessing patient-related barriers and facilitators to medical help-seeking for cancer symptoms, diagnosis and treatment in adults (18+ years) living in LMICs. Quality of included studies was assessed using the Critical Appraisal Skills Programme tool. Data were synthesised using meta-analytic techniques, meta-ethnography or narrative synthesis as appropriate.ResultsOf 3963 studies identified, 64 were included. In quantitative studies, use of traditional, complementary and alternative medicine (TCAM) was associated with 3.60 higher odds of prolonged medical help-seeking (95% CI 2.06 to 5.14). Qualitative studies suggested that use of TCAM was a key barrier to medical help-seeking in LMICs, and was influenced by causal beliefs, cultural norms and a preference to avoid biomedical treatment. Women face particular barriers, such as needing family permission for help-seeking, and higher stigma for cancer treatment. Additional psychosocial barriers included: shame and stigma associated with cancer such as fear of social rejection (eg, divorce/disownment); limited knowledge of cancer and associated symptoms; and financial and access barriers associated with travel and appointments.ConclusionDue to variable quality of studies, future evaluations would benefit from using validated measures and robust study designs. The use of TCAM and gender influences appear to be important barriers to help-seeking in LMIC. Cancer awareness campaigns developed with LMIC communities need to address cultural influences on medical help-seeking behaviour.

scholarly journals Housing with support for older people: a mixed-methods systematic review protocol

2020 ◽  
Vol 3 ◽  
pp. 64
Author(s):  
Camille Coyle ◽  
Sarah Buggy ◽  
Olivia Cagney ◽  
Louise Farragher ◽  
Caitriona Lee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Mixed Methods ◽  
Older People ◽  
Grey Literature ◽  
Qualitative And Quantitative ◽  
Ovid Medline ◽  
The Impact ◽  
People’S Perceptions

Background: The implementation of housing with support is rapidly expanding, particularly as life expectancy is increasing throughout the world. This expansion is likely to intensify in the context of coronavirus disease 2019 (COVID-19), which has revealed the risks of relying primarily on nursing homes. This mixed-methods systematic review aims to: 1) explore older people’s perceptions and experiences of housing with support and 2) examine the impact of providing housing with support for older people on their quality of life. Methods: The databases Ovid Medline, Ovid Social Policy & Practice, EBSCO CINAHL, and EBSCO SOCIndex will be searched, and grey literature will also be identified. Quality assessment will be carried out using Joanna Briggs Institute’s Critical Appraisal Checklist for Qualitative Research as well as a tool from the National Institutes of Health for observational cohort studies. This review will employ convergent parallel design; as such, qualitative and quantitative findings will be synthesised separately in the initial stage of analysis. The results from the qualitative and quantitative syntheses will then be integrated in the final stage of the analysis. Conclusion: This systematic review will synthesise the evidence regarding older people’s perceptions and experiences of housing with support and the impact of providing housing with support for older people on their quality of life.

P002 IBD PARTNERSHIPS: UNDERSTANDING PATIENTS VS. CLINICIANS PERSPECTIVES OF IBD TREATMENT OPTIONS TO IMPROVE SHARED DECISION-MAKING

2020 ◽  
Vol 26 (Supplement_1) ◽  
pp. S51-S51
Author(s):  
Sandra Zelinsky ◽  
Catherine Finlayson
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Focus Groups ◽  
Shared Decision Making ◽  
Healthcare Providers ◽  
Treatment Decisions ◽  
Research Approach ◽  
Shared Decision ◽  
Rural And Urban

Abstract Background The patient is the only constant in the care journey, the person who experiences both processes and the outcomes of care. There is an international shift towards including patients as equal partners in research. Co-producing research with Inflammatory Bowel Disease (IBD) patients to understand their values, needs and priorities when making treatment decisions will potentially improve shared decision-making between IBD patients and their Healthcare Providers (HCPs). To facilitate this process patients and HCPs must have a common understanding of expected medication benefits, risks and the potential impact on quality of life. The information available to facilitate this conversation must be aligned and reflect the priorities that IBD Patients and Healthcare Providers consider when making treatment decisions. Both parties can then share information and work towards an agreement to what treatment plan should be implemented. Aims To understand what matters most to IBD patients when making treatment decisions by conducting a qualitative patient-led peer to peer study which will inform the development of an IBD patient and HCP survey. Methods IBD patients (≥ 18 years of age) were recruited through the IBD clinic at the University of Calgary and via social media. Focus groups were held in three separate provinces (British Columbia, Alberta and Ontario) in both rural and urban locations. The focus groups were facilitated by a Patient Engagement Researcher to alleviate any potential power dynamics and to create a safe space for IBD patients to share their perspectives. A participatory action research approach was used to encourage co-production with participants throughout the focus groups. The focus groups were audio recorded. Flip charts and sticky notes were used for brainstorming and prioritization exercises. All audio and written data were transcribed. Thematic analysis was used to identify emerging themes and patient priorities. Results A total of 21 participants attended the focus groups from both rural and urban locations. Participant diversity ranged in ethnicity and age. Most of the participants were female (18 females and 3 males) of which 4 were biologic naïve and 17 were biologic exposed. The Top 5 IBD Patient Priorities when making treatment decisions are 1) Risks(more serious/long term) 2) Education(Support/Evidence Based Information/Resources) 3) Side Effects(short term/less serious) 4) Efficacy 5) Impact(Quality of Life/ Lifestyle/Logistics). Conclusions Co-producing research ‘with’ and ‘by’ IBD patients helped to generate priorities that matter most to patients when making treatment decisions. The patient priorities will help in the development of an IBD Patient and HCP survey. The results from the two surveys will be compared to understand patient vs. HCP perspectives.

scholarly journals The specification, acceptability and effectiveness of respite care and short breaks for young adults with complex healthcare needs: protocol for a mixed-methods systematic review

BMJ Open ◽  
2019 ◽  
Vol 9 (6) ◽  
pp. e030470
Author(s):  
Gerlinde Pilkington ◽  
Katherine Knighting ◽  
Lucy Bray ◽  
Julia Downing ◽  
Barbara A Jack ◽  
...  
Keyword(s):  
Systematic Review ◽  
Young Adults ◽  
Mixed Methods ◽  
Respite Care ◽  
Knowledge Map ◽  
Healthcare Needs ◽  
Service Models ◽  
Framework Approach ◽  
Evidence Review

IntroductionThe number of young adults with complex healthcare needs due to life-limiting conditions/complex physical disability has risen significantly as children with complex conditions survive into adulthood. Respite care and short breaks are an essential service, however, needs often go unmet after the transition to adult services, leading to a significant impact on the life expectancy and quality of life for this population. We aim to identify, appraise and synthesise relevant evidence to explore respite care and short breaks provision for this population, and to develop a conceptual framework for understanding service models.Methods and analysisA mixed-methods systematic review conducted in two stages: (1) knowledge map and (2) evidence review. We will comprehensively search multiple electronic databases; use the Citations, Lead authors, Unpublished materials, Google Scholar, Theories, Early examples, and Related projects (CLUSTER) approach, search relevant websites and circulate a ‘call for evidence’. Using the setting, perspective, intervention/phenomenon of interest, comparison and evaluation framework, two reviewers will independently select evidence for inclusion into a knowledge map and subsequent evidence review, extract data relating to study and population characteristics, methods and outcomes; and assess the quality of evidence. A third reviewer will arbitrate where necessary.Evidence will be synthesised using the following approaches: quantitative (narratively/conducting meta-analyses where appropriate); qualitative (framework approach); policy and guidelines (documentary analysis informed approach). An overall, integrated synthesis will be created using a modified framework approach. We will use Grading of Recommendations Assessment, Development and Evaluation (GRADE)/GRADE-Confidence in the Evidence from Reviews of Qualitative Research to assess the strength and confidence of the synthesised evidence. Throughout, we will develop a conceptual framework to articulate how service models work in relation to context and setting.Ethics and disseminationEthical approval is not required as this is a systematic review. We will present our work in academic journals, at appropriate conferences; we will disseminate findings across networks using a range of media. Steering and advisory groups were established to ensure findings are shared widely and in accessible formats.PROSPERO registration numberCRD42018088780.

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