A Decade of Efforts to Add Value to Child Health Research Practices.

OBJECTIVE: To identify practices that add value to improve the design, conduct, and reporting of child health research and reduce research waste. STUDY DESIGN: In order to categorize the contributions of members of Standards for Research (StaR) in Child Health network, we developed a novel Child Health Improving Research Practices (CHIRP) framework comprised of 5 domains meant to counteract avoidable child health research waste and improve quality: 1) address research questions relevant to children, their families, clinicians, and researchers; 2) apply appropriate research design, conduct and analysis; 3) ensure efficient research oversight and regulation; 4) Provide accessible research protocols and reports; and 5) develop unbiased and usable research reports, including 17 responsible research practice recommendations. All child health research relevant publications by the 48 original StaR standards' authors over the last decade were identified, and main topic areas were categorized using this framework. RESULTS: A total of 247 publications were included in the final sample: 100 publications (41%) in domain 1 (3 recommendations), 77 publications (31%) in domain 2 (3), 35 publications (14%) in domain 3 (4), 20 publications (8%) in domain 4 (4), and 15 publications (6%) in domain 5 (3). We identified readily implementable "responsible" research practices to counter child health research waste and improve quality, especially in the areas of patients and families' engagement throughout the research process, developing Core Outcome Sets, and addressing ethics and regulatory oversight issues. CONCLUSION: While most of the practices are readily implementable, increased awareness of methodological issues and wider guideline uptake is needed to improve child health research. The CHIRP Framework can be used to guide responsible research practices that add value to child health research.

Determining the unmet needs of patients with intracranial meningioma-a qualitative assessment.

BACKGROUND: Meningiomas are the most common primary benign brain neoplasms, but despite their commonality, the supportive needs of this patient population have been overlooked. The aim of this study is to identify unmet needs of meningioma patients, caregivers, and health care providers. METHODS: We adopted a patient-centered approach by using qualitative interviewing with patients diagnosed with a meningioma who have undergone treatment in the last 10 years since the date of their interview. Informal caregivers (family and/or friends) of the patient population and health care providers who are normally involved in the management and care of meningioma patients were also interviewed. Interview transcripts were subjected to thematic analysis. RESULTS: Of the 50 participants interviewed, there were 30 patients, 12 caregivers, and 8 health care professionals. Thematic analysis revealed 4 overarching themes: (1) access to targeted postoperative care, (2) financial struggles for patients and their families, (3) lack of information specific to meningiomas and postsurgical management, and (4) lack of psychosocial support. CONCLUSION: This study identified supportive needs specific to the meningioma patient population, which predominantly falls within the postoperative phase. The postoperative journey of this patient population could potentially extend to the rest of the patient's life, which necessitates resources and information directed to support postoperative recovery and management. The development of directly relevant supportive resources that support meningioma patients in their postoperative recovery is necessary to improve the health-related quality of life in this patient population.