Pseudoretinoblastoma: Distribution Based on Gender, Age, and Laterality

Abstract Purpose: To investigate the distribution of pseudoretinoblastoma (PSRB) cases based on gender, age, and lateralityMethods: The clinical records of 607 patients (851 eyes) who were referred for suspicion of retinoblastoma between October 1998 and May 2021 were retrospectively evaluated. Patients were stratified by age as follows: ≤1 year, >1-3 years, >3-5 years, and >5 years.Results: PSRB conditions were detected in 190/607 (31.3%) patients. Of 190 patients, 129 (67.9%) were males and 61 (32.1%) were females (p=0.001). The 3 most common diagnoses were persistent fetal vasculature (PFV; 16.3%), Coats disease (15.3%), and optic nerve head drusen (ONHD; 5.3%). In males, the 3 most common diagnoses were Coats disease (20.2%), PFV (14.0%), and chorioretinal coloboma (6.2%). The 3 most common diagnoses in females included PFV (21.3%), retinal dysplasia, congenital glaucoma, and combined hamartoma (each accounting for 6.6%). PFV was the most common diagnosis in ≤1 year old patient group (26.6%). Coats disease and PFV were the most common diagnoses in >1-3 years old patient group (16.7%, for each diagnosis). Coats disease was the most common diagnosis in >3-5 years old (30.8%) and >5 years old patient groups (13.1%). PSRBs were unilateral in 121/190 (63.7%) patients and bilateral in 69/190 (36.3%). The most common unilateral and bilateral diagnoses were Coats disease (24.0%) and PFV (24.6%) respectively.Conclusion: In our study, 31.3% of patients referred for suspicion of retinoblastoma received the diagnosis of PSRB. PSRB spectrum encompasses different diseases, the distribution of which differ depending on gender, age, and laterality.

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Definitely Maybe: New Governance of Uncertainty and Risk in Patient Group Involvement with UK Guidance on Testing for Lyme Disease

Science Technology and Society ◽

10.1177/0971721820960246 ◽

2021 ◽

pp. 097172182096024

Author(s):

Alex Faulkner ◽

Kate Bloor ◽

Vahsti Hale

Keyword(s):

Lyme Disease ◽

Patient Group ◽

New Governance ◽

Difficult Patient ◽

Consultation Process ◽

Diagnostic Uncertainty ◽

Policy Actors ◽

Patient Groups ◽

Evidence Review ◽

The Uk

States that claim responsibility for citizens’ healthcare try to deal with knowledge uncertainties while preserving a duty of care. Production of clinical guidelines in disputed medical conditions or where uncertainty is high, is difficult. Patient groups may advocate non-credentialed evidence, contribute to debates and form alliances with established policy actors. In this context, Lyme disease, especially highly contested ‘chronic’ Lyme disease is a good case with which to examine how official governance institutions are managing diagnostic uncertainty and evidence for tests. The healthcare state has been provoked to develop extensive policy for Lyme disease. In the UK, national Health Technology Assessment agency, NICE, began a consultation process in 2016. NICE and other policy actors are moving towards more participatory modes of decision-making. The article analyses NICE’s recently published guidelines and consultation documents; patient groups’ contributions; observations of consultations and of evidence review processes; and recent Department of Health systematic reviews, including patient group participation. We draw on concepts of participatory governance, patient group activism and guideline involvement. We find an increased level of participation by patient groups in recent policy and evidence review processes, and hence legitimation of them as ‘stakeholders’, alongside a strengthened state position on pre-existing diagnostic and testing standards.

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