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

Essen, Helle Sorensen von; Piil, Karin; Steffensen, Karina Dahl; Poulsen, Frantz Rom

doi:10.1093/nop/npaa042

Cited by 9 publications

(13 citation statements)

References 37 publications

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“…They included four studies in their review, and the conclusion was that most patients appreciate a SDM approach and that appropriate patient information and involvement can increase patients’ well-being. The use of a patient decision aid helped to increase knowledge, to decrease uncertainty, and affected the treatment decision-making of HGG patients [ 40 ]. Díaz et al analyzed, in 26 patients diagnosed with HGG, the correlation between the quality of information the patients received about their condition, treatment options and prognosis, and the level of anxiety they showed immediately after they have received this information.…”

Section: Discussionmentioning

confidence: 99%

A prospective study of shared decision-making in brain tumor surgery

2022

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Purpose Shared decision-making (SDM) is a key tenet of personalized care and is becoming an essential component of informed consent in an increasing number of countries. The aim of this study is to analyze patient and healthcare staff satisfaction with the SDM process before and after SDM was officially introduced as the standard of care. Decision grids are important tools in the SDM process, and we developed them for three different types of intracranial tumors. Methods This prospective study was conducted in a high-volume neuro-oncological center on all consecutive eligible patients undergoing consideration of treatment for intracranial glioma and metastases. Twenty-two patients participated before and 74 after the introduction of SDM. Six and 5 staff members respectively participated in the analysis before and after team training and the introduction of SDM. The main outcome was patient and healthcare staff satisfaction with the SDM process. Results Patients reported high satisfaction with the SDM process before (mean CollaboRATE score 26 of 27 points) and after (mean CollaboRATE score 26.3 of 27 points, p = 0.23) the introduction of SDM. Interestingly, staff attitude toward SDM improved significantly from 61.68 before to 90.95% after the introduction of SDM (p-value < 0.001). Decision grids that were developed for three different types of intracranial tumors are presented. Conclusions Team training in SDM and the introduction of techniques into daily practice can increase staff satisfaction with the SDM process. High levels of patient satisfaction were observed before, with a non-significant increase after the introduction of SDM. Decision grids are an important tool to facilitate the conveyance and understanding of complex information and to achieve SDM in daily clinical practice.

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Section: Discussionmentioning

confidence: 99%

A prospective study of shared decision-making in brain tumor surgery

2022

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“…We developed a PtDA following the development steps suggested by IPDAS, and then alpha tested it with potential users. To our knowledge, this is the first PtDA that has been developed to support patients with HGG and their families in decision making at disease recurrence [ 11 , 12 , 17 , 23 ]. The participants in the alpha test were generally positive towards the PtDA and its implementation in clinical practice.…”

Section: Discussionmentioning

confidence: 99%

“…The uncertainty concerning treatment outcomes and the trade-offs between benefits and disadvantages make it essential to involve patients and include their values and preferences in the decision-making process [ 9 ]. Based on this, an increasing focus on patient involvement and shared decision making (SDM) is emerging within neuro-oncology, suggesting that neuro-oncology patients want to be involved in SDM regarding their treatment and care [ 10 , 11 , 12 , 13 , 14 ].…”

Section: Introductionmentioning

confidence: 99%

“…The reduced decision-making capacity also translates into a dependency on family support and family involvement in decision making [ 7 , 8 ]. The research on SDM for patients with HGG is limited, however, and despite a thorough search, no decision support tools or PtDAs have been identified for this population [ 11 , 12 , 17 , 23 ].…”

Section: Introductionmentioning

confidence: 99%

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Development of a Patient Decision Aid to Support Shared Decision Making for Patients with Recurrent High-Grade Glioma

Essen

Poulsen

Dahlrot

et al. 2022

IJERPH

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When high-grade gliomas recur, patients, their families, and clinicians face difficult medical decisions. There is no curable treatment, and the treatment options all come with a risk of complications and adverse effects. The patients are often cognitively affected, and they need tailored decision support. The objective of this study was to develop a patient decision aid (PtDA) targeted at patients with recurrent high-grade gliomas. Based on existing knowledge and the International Patient Decision Aids Standards, the PtDA was developed through an iterative process. The PtDA was alpha-tested by potential users to assess its acceptability and usability. The development team comprised three clinicians, two patients, two family members, and a researcher. The fifth version of the PtDA was submitted to the alpha test. Eleven patients, nine family members, and eleven clinicians assessed the PtDA and found it acceptable. Three changes were made during the alpha test. Most participants perceived the PtDA to prepare patients for decision making and improve consultations. The involvement of potential users was emphasized during the development and alpha test process. The PtDA was assessed as useful and acceptable by patients, family members, and clinicians in the decision-making situation of recurrent high-grade glioma.

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“…Moreover, some treatment-related symptoms, such as nausea or hair loss, can be self-limiting, while other symptoms, such as depression, have an enduring impact on HRQoL during the stable phase [ 13 ]. Importantly, since many glioma patients wish to be involved in decision-making concerning their treatment and care, it is critical to involve patients in prioritizing which symptoms to treat [ 14 ]. Consequently, we need to improve our understanding of whether patients would consider engaging in symptom management interventions during the stable phase of the disease.…”

Section: Introductionmentioning

confidence: 99%