Including the voice of paediatric patients: Cocreation of an engagement game

BackgroundEngaging patients in health care, research and policy is essential to improving patient‐important health outcomes and the quality of care. Although the importance of patient engagement is increasingly acknowledged, clinicians and researchers still find it difficult to engage patients, especially paediatric patients. To facilitate the engagement of children and adolescents in health care, the aim of this project is to develop an engagement game.MethodsA user‐centred design was used to develop a patient engagement game in three steps: (1) identification of important themes for adolescents regarding their illness, treatment and hospital care, (2) evaluation of the draft version of the game and (3) testing usability in clinical practice. Adolescents (12–18 years) were engaged in all steps of the development process through focus groups, interviews or a workshop. These were audio‐recorded, transcribed verbatim and analysed in MAXQDA.Results(1) The important themes for adolescents (N = 15) were included: visiting the hospital, participating, disease and treatment, social environment, feelings, dealing with staff, acceptation, autonomy, disclosure and chronically ill peers. (2) Then, based on these themes, the engagement game was developed and the draft version was evaluated by 13 adolescents. Based on their feedback, changes were made to the game (e.g., adjusting the images and changing the game rules). (3) Regarding usability, the pilot version was evaluated positively. The game helped adolescents to give their opinion. Based on the feedback of adolescents, some last adjustments (e.g., changing colours and adding a game board) were made, which led to the final version of the game, All Voices Count.ConclusionsWorking together with adolescents, All Voices Count, a patient engagement game was developed. This game provides clinicians with a tool that supports shared decision‐making to address adolescents'' wishes and needs.Patient or Public ContributionPaediatric patients, clinicians, researchers, youth panel of Fonds NutsOhra and patient associations (Patient Alliance for Rare and Genetic Diseases, Dutch Childhood Cancer Organization) were involved in all phases of the development of the patient engagement game—from writing the project plan to the final version of the game.     

Glial nodule encephalitis in the guinea pig: serial observations following cytomegalovirus infection

Summary Cytomegalovirus (CMV) encephalitis, characterized by microglial nodules, is a major neurological complication in AIDS. There is a clear need for a well-characterized laboratory model of CMV encephalitis. We report here the sequential virological, histopathological, and antibody responses of young guinea pigs inoculated intracerebrally with guinea pig CMV. Virus was found to peak in the brain in the 1st week, to peak in the spleen in the 2nd week, and to be cleared from the brain with the development of serum neutralizing antibody 3 to 4 weeks post infection. Leptomeningitis peaked at the end of the 1st week, independent of the changes found in the parenchyma. Diffuse and focal infiltration of systemic cells was found in the cortex. Microglial nodules consisting of swirled and elongated cells, sometimes in association with intranuclear inclusion bearing cells, were prominent. The parenchymal changes, including scattered foci of ependymitis and ventriculitis, were most prominent in the 2nd week post infection. This model should facilitate studies of the host defense response in the brain and of the role of antiviral therapy in CMV encephalitis.Supported by funds from the Medical Research Service of the Veterans Administration     

Psychometric methods for diagnosing and monitoring minimal hepatic encephalopathy —current validation level and practical use

Metabolic Brain Disease - Hepatic encephalopathy (HE) is cerebral dysfunction caused by liver failure and inflicts 30-40% of patients with liver cirrhosis during their disease course. Clinically...     

Can non-selective beta-blockers prevent hepatocellular carcinoma in patients with cirrhosis?

Hepatocellular carcinoma is the main liver-related cause of death in patients with compensated cirrhosis. The early phases are asymptomatic and the prognosis is poor, which makes prevention essential. We propose that non-selective beta-blockers decrease the incidence and growth of hepatocellular carcinoma via a reduction of the inflammatory load from the gut to the liver and inhibition of angiogenesis.