Experiences of transition to adult care and readiness to self-manage care in young people with perinatal HIV in England

Transcription

1 Experiences of transition to adult care and readiness to self-manage care in young people with perinatal HIV in England Ali Judd, Marthe Le Prevost, Elizabeth Chappell, Lindsay Thompson, Caroline Foster, Katie Rowson, Kate Sturgeon, Susie Brice, Di M. Gibb, on behalf of the Adolescents and Adults Living with Perinatal HIV (AALPHI) Steering Committee

2 Conflicts of interest Nothing to disclose

3 Background Few data on young people s own experiences of transition or readiness to self-manage care Self-efficacy in healthcare navigation is essential to maximise retention & adherence English as a second language, lower socio-economic status, poor literacy In UK no criteria for transition/ flexible approach Family clinic adult Paediatric adult Paediatric adolescent We describe transition experiences of young people with perinatal HIV in the AALPHI cohort in England

4 1 NICE, 2016; 2 Foster C, CHIVA 2017 Methods Inclusion: age yrs, perinatal HIV, 13 clinics, Follow-up interviews in , asked by researcher about transition experiences Transition questions adapted from the Pediatric HIV/AIDS Cohort Study (PHACS) (THANK YOU!) National transition guidelines only introduced in HIV-specific guideline focuses on readiness & transition plan 2 Not everyone completed this section of questions Descriptive statistics summarised data, and chi 2 tests compared proportions

5 Transition questions 1. Paediatric care: discussions about transition 2. Adult care: type of transition, preparedness, choice What is better or worse than paediatric care 3. Everyone: Self-management of care/ association with adherence Satisfaction with current care

6 Where were patients seen? n Paediatric Adolescent clinic in paediatrics Adolescent clinic in adult care Adult clinic Paediatric, n=45 (34%) Adult, n=87 (66%)

7 Demographics (n=132) Paediatric (n=45) Adult (n=87) % or median [IQR] Male 44% 32% Age 16 [16, 17] 20 [19, 22] Black ethnicity 78% 87% Born outside UK 56% 46% Occupation Full-time education 100% 89% Employment or neither - 11% Live with parents 100% 84% Death of one/both biol. parents 23% 30% Last time attended clinic: 6 months ago 96% 95% >6 months ago 4% 5%

8 (1) Paediatric care: discussions about transition 89% already had discussions with paediatric providers about transitioning to adult care First transition discussions were at a median age of 15 [IQR 14, 16] years

9 (2) Adult care: type/preparedness/choice Variable Direct transfer (n=64) Shared care (n=20) Median age at transfer 17 [16, 18] 16 [15, 17] Median number shared visits - 3 [2, 4] Moved hospital 22% 25% Level of preparedness at time of transfer 60% Who chose adult clinic Very Quite Not very Not at all 40% 20% 0% Participant chose (± family) Family chose Neither chose

10 (2) Adult care: better or worse than paediatrics? Times of clinic Staff Clinic environment Amount of responsibility you have Flexibility of appointment times Amount of support you are given Staff's understanding of your needs How well services meet your needs Advice given on educational needs Better No difference Worse 0% 20% 40% 60% 80% 100%

11 60% 40% 20% 0% (3) Everyone: self-management of care 100% Paediatric 80% Adult Composite score For each question: Yes = 1 No = 0

12 (3) Everyone: self-management composite score Paediatric care percent Adolescent/adult care Main predictor of improved self management was older age

13 Does (3) Everyone: self-management and adherence being able to name HIV medication No being able to know the number of pills having a higher composite score predict either missing 1 dose in the last 3 days OR >2 days in the last month?

14 (3) Everyone: satisfaction with current care 100% 80% 60% 40% Paediatric Adult 20% 0% Happy with clinic Happy with staff

15 Conclusions Transition discussions occurred before transfer and most felt prepared at transfer Adult care was no worse than paediatric care The proportion self-managing care was generally higher in adult care Could improve on naming ART, CD4, VL, side effects Not the first wave of UK adolescents transitioning

16 Acknowledgements We thank all young people, parents and staff from the clinics and voluntary services in AALPHI. UCL Project team: S. Brice, A. Judd, M. Le Prevost, K. Rowson, K. Sturgeon, L. Thompson. Investigators: M. Conway, K. Doerholt, D. Dunn, C. Foster, D. Gibb, A. Judd (PI), S. Kinloch, N. Klein, H. Lyall, D. Melvin, D. Pillay, K. Prime, T. Rhodes, C. Sabin, M. Sharland, C. Thorne, P. Tookey. UCL Data Services: C. Diaz Montana, K. Fairbrother, M. Rauchenberger, N. Tappenden, S. Townsend. Neurocognitive subgroup: A. Arenas-Pinto, C. Foster, A. Judd, D. Melvin, A. Winston. Steering Committee chairs: D. Gibb, C. Foster. NHS clinics (named alphabetically): LONDON: Chelsea and Westminster NHS Foundation Trust, F. Boag, P. Seery; Great Ormond Street Hospital NHS Foundation Trust, M, Clapton, J. Flynn; Guys and St Thomas NHS Foundation Trust, A. Callahgan, A, Mukela; Imperial College Healthcare NHS Trust, S. Ayres, C. Foster; King s College Hospital NHS Foundation Trust, E. Fuller, E. Hamlyn; Mortimer Market Centre, Central and North West London NHS Foundation Trust, R. Gilson, T. Peake; Newham University Hospital, V. Apea; North Middlesex University Hospital NHS Trust, J. Daniels, C. Wood; Royal Free London NHS Foundation Trust, T. Fernandez, S. Kinloch; St George s University Hospitals NHS Foundation Trust, S. Storey, K. Prime. REST OF ENGLAND: Alder Hey Children s NHS Foundation Trust, S. Paulus, A. Riordan; Birmingham Heartlands, Heart of England NHS Foundation Trust J. Daglish, C. Robertson; Bristol Royal Infirmary, University Hospitals Bristol NHS Foundation Trust, J. Bernatoniene, L. Hutchinson, University Hospitals Bristol NHS Foundation Trust, M. Gompel, L. Jennings; Leeds Teaching Hospitals NHS Trust, M. Dowie, S. O Riordan; University Hospitals of Leicester NHS Trust, W. Ausalut, S. Bandi; North Manchester General Hospital, Pennine Acute Hospitals NHS Trust, P. McMaster, C. Murphy; Royal Liverpool and Broadgreen University Hospitals NHS Trust, M. Chaponda, S Paulus. Voluntary services (named alphabetically): Blue Sky Trust, C. Dufton, B. Oliver; Body and Soul, J. Marsh; Faith in People, I. Clowes; Positively UK, B. Osoro; Metro Charity, B. Driver. Funding: Monument Trust and PENTA Foundation.