scholarly journals Shared decision making in high-grade glioma patients—a systematic review

2020 ◽  
Vol 7 (6) ◽  
pp. 589-598
Author(s):  
Helle Sorensen von Essen ◽  
Karin Piil ◽  
Karina Dahl Steffensen ◽  
Frantz Rom Poulsen
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
High Grade Glioma ◽  
Well Being ◽  
Treatment Decisions ◽  
Sufficient Information ◽  
Narrative Synthesis ◽  
High Grade ◽  
Shared Decision ◽  
Inclusion Criteria

Abstract Background Shared decision making (SDM) has proven to be a valuable approach in different patient populations when treatment decisions are called for. Along the disease trajectory of high-grade glioma (HGG), patients are presented with a series of treatment decisions. At the same time, HGG patients often experience cognitive deterioration and reduced decision-making capacity. This study aimed to review the current knowledge about shared decision making from the perspective of the HGG patient. Methods Systematic searches were performed in MEDLINE, CINAHL, PsycINFO, and EMBASE. Studies were reviewed against the inclusion criteria and assessed for methodological quality. Descriptive data from the included studies were extracted and a narrative synthesis of the findings was performed. Results The searches resulted in 5051 original records. Four studies involving 178 HGG patients fulfilled the inclusion criteria. The narrative synthesis revealed that most HGG patients in the included studies appreciated an SDM approach and that sufficient information and involvement increased patients’ emotional well-being. The use of a patient decision aid showed the potential to increase knowledge, decrease uncertainty, and affect the treatment decision making of HGG patients. Conclusion The results indicate that many HGG patients prefer an SDM approach and that SDM can lead patients toward improved emotional well-being. The evidence is weak, however, and firm conclusions and practice guidelines concerning SDM in HGG patients cannot be made. Future research is warranted to improve decision support for HGG patients.

Improving the Perception of Patient-Centered Wellness in a Virtual Population During the COVID-19 Pandemic

2021 ◽  
pp. JDNP-D-20-00078
Author(s):  
Sybilla Myers ◽  
Christopher Kennedy
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Shared Decision Making ◽  
Cognitive Theory ◽  
Well Being ◽  
Mobile App ◽  
Shared Decision ◽  
Patient Centered ◽  
The Social

BackgroundPerceived health-related quality of life (HRQOL) is fundamental to well-being and is a meaningful way to measure physical and mental health.Local ProblemNo standard method exists for measuring perceived HRQOL during the COVID-19 pandemic in participants as they attempt to improve their self-determined wellness goals. An implementation plan that considers the social distancing limitations imposed can be used to predict an individual’s likelihood of long-term success.MethodsDuring the four, 2-week plan-do-study-act (PDSA) cycles, the Social Cognitive Theory model informed the implementation of the four core interventions. To guide iterative changes, the data was analyzed through Excel and run charts.InterventionsThe four core interventions were the shared decision-making tool (SDMT), health mobile app tool (HMAT), wellness tracker tool (WTT), and the team engagement plan.ResultsAmong 28 participants, perceived quality of life increased by 70%, engagement in shared decision-making increased to 82%, app use and confidence increased to 85%, and goal attainment reached 81%.ConclusionsThe SDMT, health app, and wellness tracker created a methodical plan of accountability for increasing participant wellness. The contextual barrier of the COVID-19 pandemic added a negative wellness burden which was mitigated by creating a patient-centered culture of wellness.

scholarly journals The Association Between Patients' eHealth Literacy and Satisfaction With Shared Decision-making and Well-being: Multicenter Cross-sectional Study (Preprint)

2020 ◽  
Author(s):  
Richard Huan Xu ◽  
Ling-Ming Zhou ◽  
Eliza Lai-Yi Wong ◽  
Dong Wang
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Regression Models ◽  
Well Being ◽  
Shared Decision ◽  
Background Characteristics ◽  
Cross Sectional ◽  
Ehealth Literacy ◽  
High Level ◽  
The Relationship

BACKGROUND Although previous studies have shown that a high level of health literacy can improve patients’ ability to engage in health-related shared decision-making (SDM) and improve their quality of life, few studies have investigated the role of eHealth literacy in improving patient satisfaction with SDM (SSDM) and well-being. OBJECTIVE This study aims to assess the relationship between patients’ eHealth literacy and their socioeconomic determinants and to investigate the association between patients’ eHealth literacy and their SSDM and well-being. METHODS The data used in this study were obtained from a multicenter cross-sectional survey in China. The eHealth Literacy Scale (eHEALS) and Investigating Choice Experiments Capability Measure for Adults were used to measure patients’ eHealth literacy and capability well-being, respectively. The SSDM was assessed by using a self-administered questionnaire. The Kruskal-Wallis one-way analysis of variance and Wilcoxon signed-rank test were used to compare the differences in the eHEALS, SSDM, and Investigating Choice Experiments Capability Measure for Adults scores of patients with varying background characteristics. Ordinary least square regression models were used to assess the relationship among eHealth literacy, SSDM, and well-being adjusted by patients’ background characteristics. RESULTS A total of 569 patients completed the questionnaire. Patients who were male, were highly educated, were childless, were fully employed, were without chronic conditions, and indicated no depressive disorder reported a higher mean score on the eHEALS. Younger patients (SSDM<sub>≥61 years</sub>=88.6 vs SSDM<sub>16-30 years</sub>=84.2) tended to show higher SSDM. Patients who were rural residents and were well paid were more likely to report good capability well-being. Patients who had a higher SSDM and better capability well-being reported a significantly higher level of eHealth literacy than those who had lower SSDM and poorer capability well-being. The regression models showed a positive relationship between eHealth literacy and both SSDM (<i>β</i>=.22; <i>P</i>&lt;.001) and well-being (<i>β</i>=.26; <i>P</i>&lt;.001) after adjusting for patients’ demographic, socioeconomic status, lifestyle, and health status variables. CONCLUSIONS This study showed that patients with a high level of eHealth literacy are more likely to experience optimal SDM and improved capability well-being. However, patients’ depressive status may alter the relationship between eHealth literacy and SSDM. CLINICALTRIAL

scholarly journals Treatment Choice in Adolescents With Cleft Lip and/or Palate: The Importance of Shared Decision-Making

2019 ◽  
Vol 56 (9) ◽  
pp. 1220-1229
Author(s):  
Francesca Wogden ◽  
Alyson Norman ◽  
Louise Dibben
Keyword(s):  
Decision Making ◽  
Young People ◽  
Shared Decision Making ◽  
Cleft Lip ◽  
Well Being ◽  
Medical Decision ◽  
Shared Decision ◽  
Pediatric Dentist ◽  
Semistructured Interviews ◽  
Inductive Thematic Analysis

Objective: Limited research has studied the involvement of children in medical decision-making. The aim of the study was to understand the involvement of adolescents with cleft lip and/or palate (CL/P) in decisions about elective surgeries and treatments. Design: Parents and professionals completed mixed-methods questionnaires about the degree to which children had been involved in choices about elective treatments. Data were analyzed using content analysis. Young people aged 12 to 25 years were asked to take part in semistructured interviews. The data were analyzed using inductive thematic analysis. Setting: Questionnaire data collection took place online, and interview data were collected via messenger or telephone-based interviews. Participants: The study employed 30 participants; 11 young people (3 male, 8 female), 17 parents (13 mothers, 4 fathers), and 5 professionals (2 surgeons, 2 speech and language therapists, and 1 pediatric dentist). Results: Five main themes were identified. These reflected participants feeling that with increasing age should come increased involvement in decision-making and that it was important for adolescents to “have a voice” during decision-making. Parents, peers, and health professionals were identified as influencing decisions. Most adolescents reported overall satisfaction with their involvement in decision-making but sometimes felt “left in the dark” by professionals or under pressure from parents. A desire to improve speech and/or appearance was as an area where adolescents wanted to be more involved in decision-making. Conclusions: Shared decision-making is an important factor for psychological well-being by promoting autonomy and self-esteem among adolescents with CL/P.

Achieving shared treatment decisions

2017 ◽  
Author(s):  
Martin H.N. Tattersall ◽  
David W. Kissane
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Decision Aids ◽  
Treatment Options ◽  
Treatment Decision ◽  
Treatment Decisions ◽  
Shared Decision ◽  
Similar Treatment ◽  
Treatment Benefits ◽  
Patient Values

The respect of a patient’s autonomous rights within the model of patient-centred care has led to shared decision-making, rather than more paternalistic care. Understanding patient needs, preferences, and lifestyle choices are central to developing shared treatment decisions. Patients can be prepared through the use of question prompt sheets and other decision aids. Audio-recording of informative consultations further helps. A variety of factors like the patient’s age, tumour type and stage of disease, an available range of similar treatment options, and their risk-benefit ratios will impact on the use of shared decision-making. Modifiable barriers to shared decision-making can be identified. Teaching shared decision-making includes the practice of agenda setting, use of partnership statements, clarification of patient preferences, varied approaches to explaining potential treatment benefits and risks, review of patient values and lifestyle factors, and checking patient understanding–this sequence helps both clinicians and patients to optimally reach a shared treatment decision.

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.

“It’s important to me”: A qualitative analysis of shared decision-making and patient preferences in early-stage breast cancer patients.

2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 227-227
Author(s):  
Valerie Lawhon ◽  
Rebecca England ◽  
Audrey S. Wallace ◽  
Courtney Williams ◽  
Stacey A. Ingram ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Shared Decision Making ◽  
Patient Preferences ◽  
Early Stage ◽  
Treatment Decision ◽  
Treatment Decisions ◽  
Early Stage Breast Cancer ◽  
Shared Decision ◽  
Treatment Decision Making

227 Background: Shared decision-making (SDM) occurs when both patient and provider are involved in the treatment decision-making process. SDM allows patients to understand the pros and cons of different treatments while also helping them select the one that aligns with their care goals when multiple options are available. This qualitative study sought to understand different factors that influence early-stage breast cancer (EBC) patients’ approach in selecting treatment. Methods: This cross-sectional study included women with stage I-III EBC receiving treatment at the University of Alabama at Birmingham from 2017-2018. To understand SDM preferences, patients completed the Control Preferences Scale and a short demographic questionnaire. To understand patient’s values when choosing treatment, semi-structured interviews were conducted to capture patient preferences for making treatment decisions, including surgery, radiation, or systemic treatments. Interviews were audio-recorded, transcribed, and analyzed using NVivo. Two coders analyzed transcripts using a constant comparative method to identify major themes related to decision-making preferences. Results: Amongst the 33 women, the majority of patients (52%) desired shared responsibility in treatment decisions. 52% of patients were age 75+ and 48% of patients were age 65-74, with an average age of 74 (4.2 SD). 21% of patients were African American and 79% were Caucasian. Interviews revealed 19 recurrent treatment decision-making themes, including effectiveness, disease prognosis, physician and others’ opinions, side effects, logistics, personal responsibilites, ability to accomplish daily activities or larger goals, and spirituality. EBC patient preferences varied widely in regards to treatment decision-making. Conclusions: The variety of themes identified in the analysis indicate that there is a large amount of variability to what preferences are most crucial to patients. Providers should consider individual patient needs and desires rather than using a “one size fits all” approach when making treatment decisions. Findings from this study could aid in future SDM implementations.

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