| Literature DB >> 30075795 |
Margot Walter1, Sylvia Kamphuis2, Philomine van Pelt3, Annemarie de Vroed3, Johanna M W Hazes3.
Abstract
BACKGROUND: In 2008 a clinical transition pathway for young people with juvenile-onset rheumatic and musculoskeletal diseases (jRMD) aiming at improving transitional care was instituted. Historical data on drop-out rate in our clinic was 35%, one year before the implementation of the transition pathway. This study aims to I) evaluate the effectiveness of the clinical transition pathway, II) evaluate the experiences and satisfaction of YP with the transitional process and evaluate their perceived self-management skills.Entities:
Keywords: Clinical transition pathway; Juvenile-onset rheumatic and musculoskeletal diseases; Outcome research; Transition; Young people
Mesh:
Year: 2018 PMID: 30075795 PMCID: PMC6091100 DOI: 10.1186/s12969-018-0268-3
Source DB: PubMed Journal: Pediatr Rheumatol Online J ISSN: 1546-0096 Impact factor: 3.054
Demographics of YP transferred from pediatric rheumatology to the adult rheumatology clinic and the adolescent JIA-clinic between 2009 and 2015
| YP transferred to the adult clinic ( | YP transferred to the adolescent JIA-clinic ( | |
|---|---|---|
| Transfer period | 2009–2015 | 2012–2015 |
| Gender Female (%) | 71% | 56% |
| Mean age (SD) at time of study inclusion | 22.2 (2.4) | 18.6 (2.3) |
| Mean age (SD) at transfer | 17.8 (1.5) | 15.2 (2.1) |
| Diagnosis ( | ||
| • JIA – oligoarticular | • 21 / 27 | • 26 / 37 |
| • JIA – polyarticular | • 15 / 19 | • 21 /30 |
| • JIA – PSA | • 3 / 4 | • 3 /4 |
| • JIA – ERA | • 8 / 10 | • 7 /10 |
| • SLE | • 15 / 19 | • 1 /2 |
| • Other (e.g. GPA, FMF) | • 16 / 21 | • 12 /17 |
| Disease activity before transfer (median, IQR) | ||
| • Number of tender joints | • 0 (0–0) | • 0 (0–0) |
| • Number of swollen joints | • 0 (0–0) | • 0 (0–0) |
| • ESR | • 8 (3–17) | • 8 (3–15) |
| Disease activity after transfer | ||
| • Number of tender joints | • 0.(0–0) | • 0 (0–1) |
| • Number of swollen joints | • 0.(0–0) | • 0 (0–1) |
| • ESR | • 9 (4–19) | • 8 (3–15) |
Abbreviations: JIA Juvenile Idiopathic Arthritis, PsA Psoriatic Arthritis, ERA Enthesitis Related Arthritis, SLE Systemic Lupus Erythematosus, GPA Granulomatosis with Polyangiitis, FMF Familial Mediterranean Fever
Drop-out rate of YP and the presence ITP after transfer to adult rheumatology clinic and adolescent JIA clinic
| YP transferred to the adult clinic | YP transferred to the adolescent JIA clinic | ||
|---|---|---|---|
| Drop-out rate after 1 year (% / | 5.1% (4 of 78) | 1.3% (1 of 76) | 0.18 |
| Drop-out rate after 2 years (% / | 6.7% (5 of 74) # | 2.7% (2 of 75) | 0.51 |
| Drop-out rate after 3 years (% / | 5.7% (4 of 69) # | 0% (0 of 73) | 0.10 |
| Total drop-out rate (1–3 years after transfer) | 16.6% (13 of 78) | 3.9% (3 of 76) | |
| Presence of ITP at transfer (%) | 55% | 94% | < 0.01* |
Abbreviations: YP Young People, JIA Juvenile Idiopathic Arthritis *: P-value < 0.05 was considered statically significant #: drop-out rate for year 2 and year 3: the number of remaining patients in care were taken as the total number of patients in that year of follow up
Questionnaire results of YP transferred to the adult or adolescent JIA-clinic
| Questionnaires | Responders transferred to the adult clinic | Responders transferred to the adolescent JIA clinic | |
|---|---|---|---|
| VAS satisfaction with transition ± (mean, SD) | 7.7 (0.8) | 7.5 (1.9) | 0.79 |
| OYOF-TES ± ± (mean, SD) | 72.0 (14.7) | 74.5 (12.1) | 0.44 |
| Treatment recommendations in the adult care setting are similar to those I used to receive in pediatric care (agreed,%) | 85.7 | 79.5 | 0.51 |
| There was good collaboration between pediatric and adult care (agreed,%) | 78.6 | 80 | 0.88 |
| OYOF-SES ± ± ± (mean, SD) | 59.7 (2.9) | 58.2 (5.0) | 0.42 |
| Independent visits physician (yes) | 69% | 47% | 0.06 |
| Independent visits nurse (yes) | 75% | 44% | 0.01* |
| Important topics discussed (yes) | 97% | 96% | 0.83 |
| I order my medication at the pharmacy by myself (yes) | 83% | 52% | 0.008* |
| Thinking about taking medication by myself (yes) | 90% | 80% | 0.27 |
| Forgetting medication (yes) | 52% | 80% | 0.01* |
| Making appointments independently (yes) | 86% | 42% | < 0.01* |
| Transfer discussed on time (yes) | 75% | 79% | 0.78 |
| Education negatively influenced by the disease? | 0.76 | ||
| • No | • 30% | • 29% | |
| • Repeating a class | • 23% | • 19% | |
| • Lower level | • 12% | • 12% | |
| • More absenteeism | • 19% | • 29% | |
| • Other | • 15% | • 12% | |
| Taking the disease into account at choice for vocation (yes) | 59% | 42% | 0.13 |
| Restriction in career options by the disease (yes) | 48% | 25% | 0.96 |
*: p-value * < 0.05 was considered statically significant
±: VAS satisfaction with transition: score range 1–10, higher score reflects higher satisfaction
±±: score-range of OYOF-TES 18–90, higher score reflects higher satisfaction of YP with transition
± ± ±: score-range of OYOF-SES 10–64, higher score reflects higher self-efficacy of YP
Abbreviations: YP Young People, JIA Juvenile Idiopathic Arthritis, VAS visual analogue scale, OYOF-TES on your own feet transfer experience scale, OYOF-SES on your own feet self-efficacy scale