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Shared Decision Making With Young People at Ultra High Risk of Psychotic Disorder.

ABSTRACT: Introduction: While the majority of young people who meet the criteria for being considered at increased risk of psychosis do not go on to develop a psychotic disorder, young people are currently being identified and treated in early intervention services. Ethical concerns have been raised concerning the decision about whether or not to provide treatment, and if so, what type of treatment. This study sought to support young people themselves to make these decisions with support from their clinician through a shared decision-making approach, facilitated by an online decision aid. Methods: This project used the International Patient Decision Aid Standards (IPDAS) to guide the development and piloting of an online decision aid across two phases: (1) qualitative, semi-structured focus groups with young people who were past clients and clinicians from an early psychosis service; and (2) pilot testing of the decision aid with clinicians and young people who were current clients to finalize the development. Results: Issues discussed by clinicians in the focus group were grouped into three main areas: (1) engagement phase; (2) assessment and priorities for treatment; and (3) initial and ongoing decision making. Clients focused on the context in which the decisions were made, including as they experienced initial feelings of resistance, and then acceptance of efforts made to describe and treat their mental health challenges. Clients highlighted the need for collaboration between themselves and their clinician, and the need to be equipped with the knowledge and tools to take care of themselves. These focus group data were used to refine the online decision aid. Pilot testing revealed that while it was overall useful and relevant, important limitations were noted by both clients and clinicians. Discussion: The use of a decision aid to facilitate shared decision making (SDM) in this area is feasible and has utility for both clients and clinicians. Use of such a tool can help to address the need to uphold the rights of young people as decision makers about their own care. Future efforts should embed decision aids within complex SDM interventions, and research to understand issues relating to implementation of these interventions.

SUBMITTER: Simmons MB

PROVIDER: S-EPMC8481955 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundShared decision making is a process where patients and clinicians collaborate to make treatment choices based on the patients' preferences and best available evidence. The implementation of shared decision making remains limited for patients with psychotic disorders despite being recommended at policy level, being advocated as ethical right and wanted by the patient's. A barrier to implementation that is often mentioned is reduced decision-making capacity among patients. The challenges of implementing shared decision making highlights a need for more knowledge on shared decision making for these patients. Moreover, the association between patient-related characteristics and shared decision making is unclear, and further research have been suggested. More knowledge of factors associated with involvement in shared decision making can enhance understanding and help to empower patients in the decision-making process. The current study examined the extent of reported shared decision making among patients with a psychotic disorder in mental health care and factors associated with shared decision making.MethodsThis study included 305 participants with a psychotic disorder from 39 clinical inpatient and outpatient sites across Norway. Shared decision making was assessed using the CollaboRATE survey. A linear mixed model was estimated to assess characteristics associated with shared decision making scores.ResultsThe CollaboRATE mean score was 6.3 (ranging from 0 to 9), the top score was 14.1% and increased global satisfaction with services was significantly associated with a higher level of shared decision making (regression coefficient 0.27, 95% confidence interval (0.23; 0.32), p < 0.001).ConclusionsThe low top score shows that few patients felt that they received the highest possible quality of shared decision making, indicating that many patients found room for improvement. This suggests that services for patients with psychotic disorders should be designed to give them a greater role in decision making. Shared decision making might play a key role in mental health care, ensuring that patients with psychotic disorders are satisfied with the services provided.Trial registrationNCT03271242, date of registration: 5 Sept. 2017.

Project description:BackgroundShared decision-making (SDM) is a process whereby clinicians and patients work together to select treatments based on both the patient's preferences and clinical evidence. Although patients with psychotic disorders want to participate more in decisions regarding their care, they have limited opportunities to do so because of various barriers. Knowing about health professionals' experiences with SDM is important toward achieving successful implementation. The study aim was to describe and explore health professionals' SDM experiences with patients with psychotic disorders.MethodsThree focus group interviews were conducted, with a total of 18 health professionals who work at one of three Norwegian community mental health centres where patients with psychotic disorders are treated. We applied a descriptive and exploratory approach using qualitative content analysis.ResultsHealth professionals primarily understand the SDM concept to mean giving patients information and presenting them with a choice between different antipsychotic medications. Among the barriers to SDM, they emphasized that patients with psychosis have a limited understanding of their health situation and that time is needed to build trust and alliances. Health professionals mainly understand patients with psychotic disorders as a group with limited abilities to make their own decisions. They also described the concept of SDM with little consideration of presenting different treatment options. Psychological or social interventions were often presented as complementary to antipsychotic medications, rather than as an alternative to them.ConclusionHealth professionals' understanding of SDM is inconsistent with the definition commonly used in the literature. They consider patients with psychotic disorders to have limited abilities to participate in decisions regarding their own treatment. These findings suggest that health professionals need more theoretical and practical training in SDM.

Project description:INTRODUCTION:Surgical treatments are being offered to more patients than ever before, and increasingly to high-risk patients (typically multimorbid and over 75). Shared decision making is seen as essential practice. However, little is currently known about what 'good' shared decision making involves nor how it applies in the context of surgery for high-risk patients. This new study aims to identify how high-risk patients, their families and clinical teams negotiate decision making for major surgery. METHODS AND ANALYSIS:Focusing on major joint replacement, colorectal and cardiac surgery, we use qualitative methods to explore how patients, their families and clinicians negotiate decision making (including interactional, communicative and informational aspects and the extent to which these are perceived as shared) and reflect back on the decisions they made. Phase 1 involves video recording 15 decision making encounters about major surgery between patients, their carers/families and clinicians; followed by up to 90 interviews (with the same patient, carer and clinician participants) immediately after a decision has been made and again 3-6 months later. Phase 2 involves focus groups with a wider group of (up to 90) patients and (up to 30) clinicians to test out emerging findings and inform development of shared decision making scenarios (3-5 summary descriptions of how decisions are made). ETHICS AND DISSEMINATION:The study forms the first part in a 6-year programme of research, Optimising Shared decision-makIng for high-RIsk major Surgery (OSIRIS). Ethical challenges around involving patients at a challenging time in their lives will be overseen by the programme steering committee, which includes strong patient representation and a lay chair. In addition to academic outputs, we will produce a typology of decision making scenarios for major surgery to feed back to patients, professionals and service providers and inform subsequent work in the OSIRIS programme.

Project description:PurposeFertility preservation (FP) is an important issue for young survivors of breast cancer. Although international guidelines recommend pre-treatment fertility counseling for women with breast cancer, there is no standardized protocol or referral system for FP in South Korea. There are also barriers to discussing FP that make patient-centered decision making difficult. This study aimed to develop a shared decision making program for FP and compare the rates of FP procedures between the usual care and shared decision making groups. We hypothesized that multidisciplinary shared decision making for FP would increase the rate of FP procedures and patient satisfaction.MethodsThe multidisciplinary shared decision making for FP in young women with breast cancer (MYBC) is a multicenter, clustered, stepped-wedge, randomized trial. A total of 1100 patients with breast cancer, aged 19-40 years, from nine hospitals in South Korea, will be enrolled. They will be randomized at the institutional level and assigned to usual care and shared decision making groups. Four institutions, each of which can recruit more than 200 patients, will each become a cluster, whereas five institutions, each of which can recruit more than 50 patients, will become one cluster, for a total of five clusters. The shared decision making groups will receive multidisciplinary programs for FP developed by the investigator. The primary outcome is the rate of FP procedures; secondary outcomes include fertility results, satisfaction, and quality of life. Outcomes will be measured at enrollment, treatment initiation, and the 1-, 3-, and 5-year follow-ups after starting breast cancer treatment.DiscussionA multidisciplinary shared decision making program for FP is expected to increase fertility rates and satisfaction among young patients with breast cancer. This study will provide the evidence to implement a multidisciplinary system for patients with breast cancer.Trial registrationClinicalTrials.gov Identifier: NCT05139641. Registered on December 1, 2021.

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Shared Decision Making With Young People at Ultra High Risk of Psychotic Disorder.

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