Patient and service user engagement in research: a systematic review and synthesized framework.

BACKGROUND: There is growing attention towards increasing patient and service user engagement (PSUE) in biomedical and health services research. Existing variations in language and design inhibit reporting and indexing, which are crucial to comparative effectiveness in determining best practices. OBJECTIVE: This paper utilizes a systematic review and environmental scan to derive an evidence-based framework for PSUE. DESIGN: A metanarrative systematic review and environmental scan/manual search using scientific databases and other search engines, along with feedback from a patient advisory group (PAG). ELIGIBLE SOURCES: English-language studies, commentaries, grey literature and other sources (including systematic and non-systematic reviews) pertaining to patient and public involvement in biomedical and health services research. DATA EXTRACTED: Study description (e.g. participant demographics, research setting) and design, if applicable; frameworks, conceptualizations or planning schemes for PSUE-related endeavours; and methods for PSUE initiation and gathering patients'/service users' input or contributions. RESULTS: Overall, 202 sources were included and met eligibility criteria; 41 of these presented some framework or conceptualization of PSUE. Sources were synthesized into a two-part framework for PSUE: (i) integral PSUE components include patient and service user initiation, reciprocal relationships, colearning and re-assessment and feedback, (ii) sources describe PSUE at several research stages, within three larger phases: preparatory, execution and translational. DISCUSSION AND CONCLUSIONS: Efforts at developing a solid evidence base on PSUE are limited by the non-standard and non-empirical nature of much of the literature. Our proposed two-part framework provides a standard structure and language for reporting and indexing to support comparative effectiveness and optimize PSUE.

Shared Decision Making in Pediatrics: A Systematic Review and Meta-analysis.

BACKGROUND: Little is known about the impact of interventions to support shared decision making (SDM) with pediatric patients. OBJECTIVES: To summarize the efficacy of SDM interventions in pediatrics on patient-centered outcomes. DATA SOURCES: We searched Ovid Medline, Ovid Embase, Ovid Cochrane Library, Web of Science, Scopus, and Ovid PsycInfo from database inception to December 30, 2013, and performed an environmental scan. STUDY ELIGIBILITY CRITERIA: We included interventions designed to engage pediatric patients, parents, or both in a medical decision, regardless of study design or reported outcomes. STUDY APPRAISAL AND SYNTHESIS METHODS: We reviewed all studies in duplicate for inclusion, data extraction, and risk of bias assessment. Meta-analysis was performed on 3 outcomes: knowledge, decisional conflict, and satisfaction. RESULTS: Sixty-one citations describing 54 interventions met eligibility criteria. Fifteen studies reported outcomes such that they were eligible for inclusion in meta-analysis. Heterogeneity across studies was high. Meta-analysis revealed SDM interventions significantly improved knowledge (standardized mean difference [SMD] 1.21, 95% confidence interval [CI] 0.26 to 2.17, P = .01) and reduced decisional conflict (SMD -1.20, 95% CI -2.01 to -0.40, P = .003). Interventions showed a nonsignificant trend toward increased satisfaction (SMD 0.37, 95% CI -0.04 to 0.78, P = .08). LIMITATIONS: Included studies were heterogeneous in nature, including their conceptions of SDM. CONCLUSIONS AND IMPLICATIONS OF KEY FINDINGS: A limited evidence base suggests that pediatric SDM interventions improve knowledge and decisional conflict, but their impact on other outcomes is unclear. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42013004761 (http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42013004761).

Study protocol: a systematic review of pediatric shared decision making.

BACKGROUND: Shared decision making in pediatrics is unique because it often involves active participation of both the child or adolescent patient and his or her caregiver(s) in the decision making process with the clinician or care team, and the extent to which the patient is involved is commensurate with their developmental level. However, little is known about the nature of pediatric-specific shared decision making interventions and their impact. METHODS/DESIGN: We will perform a systematic review with the objective of summarizing the nature of shared decision making practices, tools, techniques and technologies in the pediatric setting as well as their effects. A literature search will include Ovid MEDLINE, Ovid EMBASE, Ovid Cochrane Library, Web of Science, Scopus and Ovid PsycInfo databases in addition to consultation of a group of shared decision making experts to identify unpublished or in-progress works. We will include original research studies involving patients <18 years, their caregivers, or both, and summarize methods and approaches designed to engage participants in the health care decision making process with clinicians. Perinatal and research participation decisions will be excluded. Descriptions of participants involved, interventions used and the measured outcomes will be reported. Quality assessment will be performed according to the design of each study, where possible. DISCUSSION: We anticipate that the paucity of published quantitative data and the heterogeneous nature of the reported results will preclude quantitative analysis. In this event, a meta-narrative approach will be undertaken. TRIAL REGISTRATION: PROSPERO registration number: CRD42013004761.