Tools for assessing health research partnership outcomes and impacts: a systematic review.

OBJECTIVE: To identify and assess the globally available valid, reliable and acceptable tools for assessing health research partnership outcomes and impacts. METHODS: We searched Ovid MEDLINE, Embase, CINAHL Plus and PsycINFO from origin to 2 June 2021, without limits, using an a priori strategy and registered protocol. We screened citations independently and in duplicate, resolving discrepancies by consensus and retaining studies involving health research partnerships, the development, use and/or assessment of tools to evaluate partnership outcomes and impacts, and reporting empirical psychometric evidence. Study, tool, psychometric and pragmatic characteristics were abstracted using a hybrid approach, then synthesized using descriptive statistics and thematic analysis. Study quality was assessed using the quality of survey studies in psychology (Q-SSP) checklist. RESULTS: From 56 123 total citations, we screened 36 027 citations, assessed 2784 full-text papers, abstracted data from 48 studies and one companion report, and identified 58 tools. Most tools comprised surveys, questionnaires and scales. Studies used cross-sectional or mixed-method/embedded survey designs and employed quantitative and mixed methods. Both studies and tools were conceptually well grounded, focusing mainly on outcomes, then process, and less frequently on impact measurement. Multiple forms of empirical validity and reliability evidence was present for most tools; however, psychometric characteristics were inconsistently assessed and reported. We identified a subset of studies (22) and accompanying tools distinguished by their empirical psychometric, pragmatic and study quality characteristics. While our review demonstrated psychometric and pragmatic improvements over previous reviews, challenges related to health research partnership assessment and the nascency of partnership science persist. CONCLUSION: This systematic review identified multiple tools demonstrating empirical psychometric evidence, pragmatic strength and moderate study quality. Increased attention to psychometric and pragmatic requirements in tool development, testing and reporting is key to advancing health research partnership assessment and partnership science. PROSPERO CRD42021137932.

Qualitative studies conducted alongside randomized controlled trials in oncology: A scoping review of use and rigour of reporting.

BACKGROUND: Randomized controlled trials (RCTs) are the gold standard for generating evidence to inform clinical oncology practice. Knowledge gained through qualitative research methodologies can be complementary to that gained through RCTs. How qualitative research has been combined with RCTs in oncology has not been previously characterized. OBJECTIVE: This scoping review was conducted to summarize how qualitative research associated with RCTs in the oncology setting has been conducted and examine the quality of reporting. ELIGIBILITY CRITERIA: Manuscripts reporting on qualitative research linked with RCTs in the cancer context that involved patients (both adult and pediatric) and/or informal caregiver (friends/family) were included. SOURCES OF EVIDENCE: Peer-reviewed manuscripts indexed in MEDLINE (OVID) and CINAHL, published in English between 2008 and January 2019. CHARTING METHODS: Formal scoping review methods were followed. A data extraction tool informed by the research questions as well as the COnsolidated criteria for REporting Qualitative research (COREQ) was utilized. Extraction was conducted independently by two authors, with disagreements resolved by a third. RESULTS: Fifty-four articles were included. Assessing information sharing, diet/exercise, and psychotherapeutic interventions were the most common focuses of the RCTs. The most common focus of the qualitative component was on gaining insight into the experience of receiving the intervention or participating in RCT procedures. How the intervention impacted the cancer experience was not a common focus of the qualitative components. Some reports provided insufficient information to understand how the qualitative components aligned with the RCT components. The results of the qualitative and RCT components were not integrated to draw meaningful conclusions about the efficacy of the intervention under study in most cases. Reports focusing on only qualitative methods had higher median (Mdn) reporting of COREQ items compared to reports that included both the qualitative and RCT components (Mdn = 18 vs. Mdn = 14, respectively; p <0.001). CONCLUSIONS: This review identified that qualitative research has been combined with RCTs in the cancer context in a number of ways, most commonly to understand the experience of receiving study interventions or participating in trial procedures. Exploring how interventions impact other aspects of the cancer experience is an approach that should be considered in future work. Formalized guidelines for the design and reporting of investigations that combine qualitative and RCT approaches in the cancer context are expected to be of value. TWEETABLE ABSTRACT: Combining qualitative research with randomized controlled trials in oncology: an impornt opportunity for discovery.

Patient experiences living with split thickness skin grafts.

The standard of care for deep burns is autologous split thickness skin grafting. Although adequate to resurface a deep wound, the resulting skin is chronically abnormal. The purpose of this study was to describe the experience of patients with split thickness skin grafts to help guide future investigations related to skin regeneration. In this study, an interpretive description qualitative methodology was employed. Subjects participated in a two-part single patient interview that was recorded and transcribed. A nurse with experience in clinical burn care coded and interpreted the data. Participants were recruited through presentation to a university based outpatient burn clinic for follow up from autologous split thickness skin grafting. Eight male patients and four female patients 20-62 years old ranging 2-29 months post-skin grafting were enrolled in the study. The most significant concerns voiced by patients were identified and organized into five themes: (1) a new normal, (2) split thickness skin graft symptoms, (3) appearance of new skin, (4) coping, and (5) participation in future clinical trials. Participants reported that the abnormalities related to their split thickness skin grafts were significant enough that they would be willing to participate in a future clinical trial investigating new cell-based therapies.