ABSTRACT
Aims The London Post COVID Syndrome Pathway was set up in October in 2020 in order to meet the needs of children affected by persistent symptoms after SARS-CoV-2 infection. The UK CLoCk study (1), 11-17 years, showed high symptom prevalence, increasing from time of testing to 3 months (35.4% to 66.5% in SARS-CoV-2 positive cases and 8.3% to 53.3% in controls). ONS (2) data from a large, randomly selected population survey (April 2020 to August 2021) reported symptom prevalence 4-8 weeks after infection of 3.3% in primary aged children (vs 3.6% in negative controls) and 4.6% (vs 2.9%) in secondary aged. The Zoe Kings study (3) showed 1.8% of children had symptoms beyond 8 weeks after infection. The COVID pandemic has affected ethnic minorities and those in deprived communities the most. Here, we aimed to describe referral patterns and ascertain factors influencing inequalities in access to care. Methods We collected demographic and clinical data from our Post COVID clinics, from October 2020 to January 2022. Deprivation deciles were based on the Index of Multiple Deprivation (IMD 2019). Decile 1 represents the most deprived 10% (decile) in England and Decile 10 represents the least deprived 10%. Analyses were descriptive. Results A total of 86 patients were referred with persistent symptoms (median age 14, range 7-18). The female:male ratio was 1.5:1 (52:34). Ethnicity data was available for n=74. Of those 5% identified from Black backgrounds (expected 13.30%);9% Asian (vs 18.50%);12% Other Ethnic Groups (vs 3.40%), 7% Mixed Ethnic Groups (vs 5%) and 53% White (vs 59.80%). Median IMD score was 6, with mode =7 (London mean 3, mode =1). Conclusion Our data suggests children from more affluent (less deprived) areas are accessing the service, with an underrepresentation of males. A small number of patients were referred compared to those reporting persistent symptoms in national surveys. This may be due to a relatively lower number having impairment and/or a lack of awareness amongst professionals. Ethnicity data shows a lower number than expected Black (40% less) and Asian (50% less) backgrounds are accessing support. Since schools re-opened in September 2021 reduced school attendance has been reported for many children. Persistent symptoms are common post viral infection, and most children recover. However, for some these can be debilitating. If children have reduced school attendance due to persistent symptoms they need prompt access to care. Our study raises concern about access to Post COVID services for all children (particularly males and those from minority backgrounds), raising lack of awareness amongst GPs and schools as a possibility. Proactive case finding is needed, particularly in hardly-reached groups. NHS England has recommended a lead for supporting equality to help this and is in post. The numbers of children accessing care is smaller than the number reporting symptoms, an area that requires further study.
ABSTRACT
Most children are diagnosed with Klinefelter's as part of investigating learning and behavioural difficulties or during prenatal screening. Klinefelter's is the most common chromosomal abnormality affecting men (1 in 650) and is associated with a large spectrum of clinical manifestations including learning, behavioural and developmental delays. The optimal management of this condition involves many different specialties, as seen in the development of adult Klinefelter multidisciplinary team (KSMDT) clinics. Unfortunately, young patients are often outside the remit of these adult clinics, and often experience major gaps and delays to the patient pathway, with a lack of coordination in areas such as hormone replacement therapy, psychological & educational support and fertility counselling. Based on this, a national survey was carried out to assess the needs of young (16-20) Klinefelter Syndrome patients which led to the setting up a young person's KSMDT clinic model for KS. We report on the patient and clinician reported feedback in the first 6 months of this clinic. The structure of the pilot young person's KSMDT clinic included input from endocrinologists, a fertility team of urologists & reproductive medicine doctors, a psychology team involving both clinical and educational psychology, a neurodisability team, genetics specialists as well as a specialist pharmacist and a patient liaison. Each consult was specifically structured to the patient's priorities, with both the patient and parent invited to attend and to separately indicate these priorities. Ten patients (mean age 17, range 16 – 20) were seen in the first clinic. To assess the quality of care received in the clinic, an 8 -point feedback questionnaire was given to each patient & parent attending the clinic to fill out at the end of the clinic. The form included a space for feedback for each speciality involved. The feedback forms were reviewed by 2 individual researchers and entries were assessed using an adapted Likert scale (0 – 5). Clinicians involved in the clinic were also encouraged to attend and rate the other specialties, the effectiveness of MDT clinic. All patients & parents were satisfied about the structure of clinic, the provision and management plans. 94% of patients indicated they were very satisfied (score = 5) about endocrine consultation compared to 100%, 90% and 88% in genetic, neurodisability/psychology and fertility consultations respectively. Key factors influencing these positive results included the presence of detailed fertility counseling, access to patient support groups and having a transition plan to the adult KSMDT clinic. Clinician feedback was positive with all members agreeing that the pre and post clinic MDTs allowed effective discussion of complex issues such as hormone initiation, future fertility as well as socio-educational factors affecting the well-being of the patient. The overall patient and clinician feedback for the young person's KSMDT clinic was uniformly positive, with the multispecialty approach allowing communication with and between all relevant specialities on the same day, avoiding the need to come for multiple separate appointments across different sites (especially relevant during the Covid era). A fully fledged clinic is now running based on the feedback and insight provided from the pilot process, with a seamless transition of these young patients to our adult KSMDT clinic to continue to support them. Work supported by industry: no. [ FROM AUTHOR] Copyright of Journal of Sexual Medicine is the property of Elsevier B.V. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full . (Copyright applies to all s.)