Factors related to the readiness of Brazilian chronic pediatric patients to transition to care in adult clinics

Carrara, Fernanda Souza Angotti; Piotto, Daniela Gerent Petry; Silva, Ilana Izidoro da; Len, Cláudio Arnaldo; Clemente, Gleice; Chiba, Sônia Mayumi; Sdepanian, Vera Lúcia; Braga, Josefina Aparecida Pellegrini; Figueiredo, Maria Stella; Andrade, Maria Cristina de; Maia, Marta Liliane de Almeida; Abreu, Ana Lúcia Cardoso Santos; Silva, Celia Maria Camelo; Terreri, Maria Teresa

doi:10.1016/j.jped.2022.10.006

Cited by 3 publications

(4 citation statements)

References 26 publications

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“…HRQoL is now measured in clinical trials and observational studies, focusing on physical, mental, emotional, social, and other healthrelated aspects. [36][37][38][39] In pediatric populations, it is important to gather reports from both patients and caregivers to provide complementary information, and strengthen the assessment of disease and treatment effects on HRQoL. 40,41 The total score mean from the PedsQL-SCD in our study was 65.7…”

Section: Discussionmentioning

confidence: 74%

“…Recently, there has been great interest in the scientific community in the concept of HRQoL and how it relates to other clinical outcomes. HRQoL is now measured in clinical trials and observational studies, focusing on physical, mental, emotional, social, and other health‐related aspects 36–39 . In pediatric populations, it is important to gather reports from both patients and caregivers to provide complementary information, and strengthen the assessment of disease and treatment effects on HRQoL 40,41 …”

Section: Discussionmentioning

confidence: 99%

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Translation, transcultural adaptation, and validation of PedsQL 3.0 Sickle Cell Disease Module into Brazilian Portuguese

Olival,

Vilela,

Hankins

et al. 2024

Pediatric Blood & Cancer

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IntroductionDespite the high prevalence of sickle cell disease (SCD) in Brazil, no studies have described the validation of an SCD‐specific health‐related quality‐of‐life (HRQoL) instrument in children. We validated PedsQL 3.0 Sickle Cell Disease Module (PedsQL‐SCD) for Brazilian Portuguese, and cross‐validated it with PedsQL 4.0 Generic Core Scale (PedsQL‐GCS) in children with SCD.MethodsPedsQL‐SCD was translated and culturally adapted using forward and reverse translations. PedsQL‐SCD and PedsQL‐GCS were tested in children and adolescents with SCD aged 2–18 years and their caregivers. Validity was assessed using the Pearson and intraclass correlation coefficients, and reliability measured with Cronbach's alpha.ResultsPedsQL‐SCD was validated in 206 children with SCD (median age 14 years, range: 8–18) and 201 caregivers. Among patients and caregivers, the mean total score for PedsQL‐SCD was 65.7 and 64.1, respectively. The mean total score for PedsQL‐GCS was 73.1 and 68.9 among patients and caregivers, respectively. The internal consistency for PedsQL‐SCD and PedsQL‐GCS was good; Cronbach's alpha coefficients ranged from .59–.93 to .64–.83 among patients and from .60–.95 to .65–.85 among caregivers, respectively. Most intercorrelations between PedsQL‐SCD and PedsQL‐GCS, for patients and caregivers, had medium to large effect sizes (range: .23–.63 and .27–.64, respectively). Pain and pain impact domains of PedsQL‐SCD and physical dimension of PedsQL‐GCS had the highest cross‐correlation (.63 and .6 for patients; .63 and .64 for caregivers, respectively), confirming convergent construct validity.ConclusionPedsQL‐SCD is a valid, culturally appropriate measure to assess HRQoL in children with SCD in Brazil and is well‐correlated PedsQL‐GCS.

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Section: Discussionmentioning

confidence: 74%

Section: Discussionmentioning

confidence: 99%

Translation, transcultural adaptation, and validation of PedsQL 3.0 Sickle Cell Disease Module into Brazilian Portuguese

Olival,

Vilela,

Hankins

et al. 2024

Pediatric Blood & Cancer

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“…[5][6][7][8] In addition, it is known how difficult it is for adolescents and young adults with chronic diseases to become self-sufficient and be able to deal independently with their illnesses. 9,10 There is no ideal transition model, and many pediatric rheumatology services do not have an established transition program. A survey from Brazil (112 pediatric rheumatologists interviewed, response rate = 68%) showed that only 13% of centers had well-established transition programs.…”

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confidence: 99%

“…Optimizing this process is not an easy task, because it depends on several factors including practice's style of health professionals, structure of pediatric and adult services, and adaptation of patients and caregivers to the transition process 5–8 . In addition, it is known how difficult it is for adolescents and young adults with chronic diseases to become self-sufficient and be able to deal independently with their illnesses 9,10 …”

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confidence: 99%

Transition From Pediatric to Adult Rheumatology Care

Borgia,

De Cunto,

Terreri

et al. 2024

J Clin Rheumatol

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Background/Purpose Adequate transition from pediatric to adult care is associated with better adherence to treatment and better outcomes in pediatric patients with chronic diseases. There are little data on transition programs, outcomes, use of transition guidelines, and available tools in pediatric rheumatology centers from Latin America (LATAM). In this study, we described the characteristics of transition programs from 3 pediatric rheumatology centers. We also introduced results of the first survey examining the transition experience in countries from LATAM. Methods The experience and implementation process of transition programs from 3 pediatric rheumatology centers were described. A survey based on a questionnaire created by Chira et al (J Rheumatol. 2014;41:768–779) from the Childhood Arthritis and Rheumatology Research Alliance was also administrated to pediatric rheumatology centers from LATAM. Results A total of 49 (68%) pediatric rheumatologists answered the survey. Most centers do not have an official and written transition program and reported a need for more tools and resources in their services to facilitate the transition experience. Conclusions Transition guidelines culturally tailored to developing countries are needed in LATAM.

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Patient–caregiver dyad concordance of transition readiness assessment for adolescent with cancer: A network analysis

Ma,

Bai,

et al. 2024

Journal of Advanced Nursing

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AimsThe concordance of adolescents with cancer and caregivers was examined, and the core elements of transition readiness were identified.MethodsIn this cross‐sectional study, 196 adolescent–caregiver dyads completed the Chinese version of Self‐Management and Transition to Adulthood with Rx = Treatment Questionnaire and its parent version between March 2023 and August 2023. Intraclass correlation coefficients, paired t‐tests and network analysis were used for data analysis.ResultsCaregivers reported slightly lower scores for transition readiness than adolescents (3.28 vs. 3.32). Healthcare engagement and provider communication were core elements in transition readiness networks. At the dyad level, agreement between adolescents' and caregivers' transition readiness ranged from poor to fair (intraclass correlation coefficients 0.103–0.486), and a significant difference in structure was found between the two networks.ConclusionsCaregivers tended to underestimate adolescents' transition readiness. Attaining better concordance between adolescents and family caregivers is critical to aligning roles and responsibilities in the transition process.Implications for Paediatric Cancer CareThis study extends the evidence on the variation in adolescents' transition readiness, clarifying the complex associative relationships among the elements of transition readiness, which can be potential pathways for improving transition readiness. Second, this study is the first to assess transition readiness from a dyad's perspective. The findings highlighted the patient–caregiver incongruence in rating patients' transition readiness, suggesting that targeted dyadic interventions should be developed and implemented to improve patient–caregiver transition readiness concordance, facilitate effective communication and mutuality between patients and caregivers, and contribute to their collaboration during the transition of adolescents and optimization of outcomes.What problem did the study address? Increased long‐term survival rates of survivors of paediatric cancer highlighted the significant need for care continuity. Transitional readiness is an important predictor of adolescent survivor's ability to adapt to a long‐term survival period. Assessments of adolescents' transition readiness are limited and overlook the synergies between family caregivers and adolescents in the transition period. What Were the Main Findings? The levels of agreement on rating transition readiness varied from poor to fair among adolescent–caregiver dyads, and caregivers tended to underestimate adolescents' transition readiness. The findings highlighted the patient–caregiver incongruence in rating patients' transition readiness. Targeted dyadic interventions should be developed and implemented to improve patient–caregiver's transition readiness concordance, and facilitate effective communication and mutuality between patients and caregivers. Reporting MethodStudy methods and results reported in adherence to the STROBE checklist.Patient or Public ContributionNo patients or members of the public were involved in the study.Contribution to the Wider Global Clinical CommunityThe main findings introduce pathways for improving transition readiness, which can enhance healthcare transition among other medical populations.

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Factors related to the readiness of Brazilian chronic pediatric patients to transition to care in adult clinics

Cited by 3 publications

References 26 publications

Translation, transcultural adaptation, and validation of PedsQL 3.0 Sickle Cell Disease Module into Brazilian Portuguese

Translation, transcultural adaptation, and validation of PedsQL 3.0 Sickle Cell Disease Module into Brazilian Portuguese

Transition From Pediatric to Adult Rheumatology Care

Patient–caregiver dyad concordance of transition readiness assessment for adolescent with cancer: A network analysis

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