Evaluation of the impact of patient involvement in health technology assessments: A scoping review.

OBJECTIVES: While involving patients in health technology assessment (HTA) has become increasingly common and important around the world, little is known about the optimal methods of evaluating patients' involvement (PI) in HTA. This scoping review was undertaken to provide an overview of currently available methods for the evaluation of PI, specifically the impact of PI on HTA recommendations. METHODS: A literature search was conducted using nine databases as well as a grey literature search of the websites of 26 organizations related to the conduct, practice or research of HTA to identify articles, reports and abstracts related to the evaluation of PI impact in HTA. RESULTS: We identified 1,248 unique citations, six of which met our eligibility criteria. These six records (five articles, and one report) were all published after 2012. Four assessed the impact of patient experience submissions on final HTA recommendations; one evaluated the impact of direct involvement on HTA committees, and one assessed impact of multiple forms of involvement. Methods of evaluation included quantitative analyses of reimbursement decisions, qualitative interviews with those directly involved in an assessment, surveys of patient groups and committee members, and the review of HTA reports. CONCLUSIONS: Quantitative evaluation of PI based on associations with funding decisions may not be feasible or fully capture the relevant impact of PI in the assessment of health technologies. Rather, a combination of both qualitative and quantitative strategies may allow for the most comprehensive assessment of the impact of PI on HTA recommendations when possible.

Priorities for caregiver research in cancer care: an international Delphi survey of caregivers, clinicians, managers, and researchers.

PURPOSE: With an increased investment in psychosocial caregiving research, it becomes critical to establish the need for data of key stakeholders and future strategic directions. The purpose of this international Delphi study was to engage caregivers, clinicians, researchers, and managers to identify priority topics for caregiver research in cancer care. METHODS: A three-round, online Delphi survey took place. In round 1, stakeholders generated caregiver research topics by answering an open-ended question. Content analysis of stakeholders' answers identified topics to be included in the round 2 survey to rate their importance. The round 3 survey included topics with less than 80% agreement for stakeholders to reconsider in light of other participants' responses. RESULTS: In round 1, eighty-six topics were generated by 103 clinicians, 63 researchers, 61 caregivers, and 22 managers and grouped into 10 content areas: impact of cancer, support programs, vulnerable caregivers, technology, role in health care, caregiver-centered care, knowledge translation, environmental scan, financial cost of caregiving, and policy. Across rounds 2 and 3, nine topics achieved consensus for all stakeholder panels (e.g., home care interventions), with three of these emphasizing more research needed on the financial impact of informal caregiving (e.g., financial impact of "burnout" for caregivers and society). Of note, vulnerable caregivers and use of technology were content areas prioritized particularly by managers and researchers, but not caregivers. CONCLUSION: By establishing a confluence of perspectives around research priorities, this study ensures the interests of key stakeholders are integrated in strategic directions, increasing the likelihood of research capable of influencing practice, education, and policy.

Toward a resolution of inconsistencies in the phonological deficit theory of reading disorders: phonological reading difficulties are more severe in high-IQ poor readers.

This study examined whether high- and low-IQ poor readers differed in patterns of reading performance. Ten-year-old poor readers with IQ scores of 110 and higher showed difficulty in taking a phonological approach to reading, failing to show an advantage in reading high-frequency regular versus irregular words and showing impaired nonword reading accuracy for their reading age. However, poor readers with IQ scores of 90 and below showed a more phonological approach to reading, with better reading of regular than irregular words of both high and low frequency, and with nonword reading skills slower than, but as accurate as, those of reading-age controls. We concluded that the high-IQ poor readers experienced difficulty in taking a phonological approach to reading, whereas the low-IQ poor readers had much less marked phonological problems, supporting Stanovich's phonological-core variable-difference model.