Unidades de transición para pacientes con patología reumática: revisión de la literatura

Castrejón, Isabel

doi:10.1016/j.reuma.2011.06.008

Cited by 10 publications

(6 citation statements)

References 35 publications

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“…Several studies also used physical, psychosocial and rheumatic specific health status as outcome measure for the success of implementing a transition program [ 11 , 16 – 19 ]. However, there is no gold standard for successful transition [ 1 , 5 , 15 , 18 , 20 ]. Additionally, it is also unclear as to whose perception the success should be measured -success as perceived by the young person and/or parent and/or professional - and at which time point success of transition should be measured.…”

Section: Introductionmentioning

confidence: 99%

Successful implementation of a clinical transition pathway for adolescents with juvenile-onset rheumatic and musculoskeletal diseases

Walter¹,

Kamphuis²,

Pelt³

et al. 2018

Pediatr Rheumatol

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BackgroundIn 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.MethodsYoung people with any jRMD transferred from the pediatric to the adult rheumatology department in our academic center were eligible to enroll in this quantitative cross-sectional observational study between 2009 and 2015. Notably in 2012, we created a dedicated adolescent JIA-clinic, located at the adult rheumatology department. Electronic patient records from all young people that were transferred between 2009 and 2015 were reviewed for drop-out of care. Young people were asked to rate a VAS for ‘satisfaction with transition’ and to complete the “on your own feet transfer experience scale” (OYOF-TES)-questionnaire regarding their experiences and satisfaction with transition. Self-management skills were measured with the “on your own feet self-efficacy scale” (OYOF-SES)-questionnaire.ResultsOne hundred fifty-four young people were transferred to the adult department, of which 76 were transferred to the dedicated adolescent JIA-clinic. The mean age at transfer was 17.8 years for YP transferred to the adult clinic and 15.2 years for transfer to the adolescent clinic. Drop-out of care rate one year after transfer was 5.1% in the adult clinic and 1.3% in the adolescent JIA-clinic. Response rate of the returned questionnaires was 61% for the adolescent JIA clinic and 36% for the adult clinic. There was no difference between responders and non-responders in demographics and disease type besides age (non-responders were significantly younger). Young people transferred to the adult and adolescent JIA-clinic both had high scores on the satisfaction scale (7.7 and 7.5 on the VAS-scale and 72.0 and 74.5 on the OYOF-TES). Self-efficacy scores were high for both groups, with OYOF-SES 59.7 for those transferred to the adult clinic and 58.2 for those transferred to the adolescent JIA-clinic.ConclusionThe implementation of the clinical transition pathway has led to a substantial improvement of patient care during the transitional process leading to low drop-out of care rate and high scores on satisfaction with transition. High scores on the self-reported self-efficacy scale suggests confidence of young people to have achieved sufficient skills to successfully manage their disease.Electronic supplementary materialThe online version of this article (10.1186/s12969-018-0268-3) contains supplementary material, which is available to authorized users.

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Section: Introductionmentioning

confidence: 99%

Successful implementation of a clinical transition pathway for adolescents with juvenile-onset rheumatic and musculoskeletal diseases

Walter¹,

Kamphuis²,

Pelt³

et al. 2018

Pediatr Rheumatol

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“…This has been recognised in rheumatology for over a decade [ 2 ]. Unfortunately, while there have been some encouraging advances in youth-friendly care [ 3 ], many young people remain inadequately prepared to manage their condition in adulthood [ 4 , 5 ]. Difficulties around medication are particularly evident, with suboptimal adherence reported in several studies [ 5 – 7 ].…”

Section: Introductionmentioning

confidence: 99%

“Sometimes I feel like a pharmacist”: identity and medication use among adolescents with juvenile arthritis

et al. 2016

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BackgroundTaking medicines as intended is difficult for everybody, but young people going through adolescence have greater problems than adults and younger children. One of the most important things that happen during the teenage years is the development of individual identities, which might not remain constant during this time and can be affected deeply by the diagnosis of a long-term condition. The aim of this study was to examine the relationships between identity and medication use among young people with juvenile arthritis.MethodsA prospective qualitative study was undertaken to collect private online ‘blog’ style data from young people (aged 11–19 years) with juvenile arthritis, and their parents, to examine their views about their condition, identity, medication and use of health services. Participants were identified from a large paediatric hospital in the UK.ResultsYoung people (n = 21) with a median age 14 years (range 11–17 years) posted a median (range) of 8 (1–36) blogs and parents (n = 6) posted 4 (1–12) blogs. Young people gave a strong sense of both private and public identity that was intertwined with their arthritis and treatment. It was evident that young people’s self-care was intrinsically linked to their attempts to maintain a sense of individually and socially constructed definitions of normality. The act of taking medication, and the consequences (positive or negative) of that act, had an impact both personally and socially.ConclusionsYoung people with juvenile arthritis reflect on their medication as a factor affecting their perception of themselves. Acknowledging the roles of both personal and social identity will be important in any strategies to support optimal medication use. This includes an understanding of the identity transformations that young people can experience and how decision-making may be affected by their attempts to retain pre-diagnosis identities and/or develop new social identities.

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“…The purpose of transition units is to provide guidance for patients and their families so that affected adolescents will become independent adults who actively participate in maintaining their health and are fully integrated in society [3]. Implementation of these units in pediatric rheumatology departments yields clear benefits for patients with childhood-onset rheumatic diseases, particularly JIA, as has been reported in several studies.…”

Section: Introductionmentioning

confidence: 99%

Analysis of employment rate and social status in young adults with childhood-onset rheumatic disease in Catalonia

2015

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BackgroundRheumatic diseases of childhood, in particular juvenile idiopathic arthritis, are chronic conditions associated with considerable morbidity and mortality that can have repercussions on aspects of adult life. The aim of this study was to determine the employment rate and social status of patients with childhood-onset rheumatic disease attending a pediatric rheumatology transition unit.MethodsA census was taken of patients seen in the Pediatric Rheumatology Transition Unit of Hospital Vall d’Hebron (Barcelona, Spain). We collected demographic and clinical variables and determined the patients’ functional capacity. All patients seen during the period of September to December 2013 underwent a survey containing items related to their social situation, maximum academic level achieved, and working life. Correlations were sought between clinical variables associated with a poor prognosis and the patients’ job performance. The data were analyzed and compared with those of an age-matched cohort from the general population of Catalonia.ResultsOf 130 patients included in the census, 96 responded to the survey. Steinbrocker grade III and IV disability (poorer functional capacity) (p = 0.0025) and longer disease duration (p = 0.017) were significantly related to greater difficulty getting a job. Patients with grade III and IV disability and those with more severe disease showed trends to having more problems carrying out work-related tasks. Our cohort included a higher percentage of students than the age-matched comparison population (50 % vs 24 %, respectively) (p = 0.0001); 82 % of patients had completed studies beyond the compulsory education level. The employment rate was lower in our patient cohort than in the comparison cohort (38.3 % vs 59.9 %) (p = 0.0001), whereas the percentage of unemployed was similar. Patients with milder disease had a higher probability of living with their parents up to a later age (OR = 3.2, 95 % CI 0.38-6.15; p = 0.029).ConclusionsDespite the advances in treatment, some patients with childhood-onset rheumatic disease encounter difficulties in their later social and working life. In our cohort, the time period needed to complete their studies tended to be longer, and incorporation into the workforce occurred at a later age. Our findings reinforce the idea that psychological support and vocational guidance are important factors in the management of these patients.

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Unidades de transición para pacientes con patología reumática: revisión de la literatura

Cited by 10 publications

References 35 publications

Successful implementation of a clinical transition pathway for adolescents with juvenile-onset rheumatic and musculoskeletal diseases

Successful implementation of a clinical transition pathway for adolescents with juvenile-onset rheumatic and musculoskeletal diseases

“Sometimes I feel like a pharmacist”: identity and medication use among adolescents with juvenile arthritis

Analysis of employment rate and social status in young adults with childhood-onset rheumatic disease in Catalonia

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