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  1. Article ; Online: Health-related quality of life and self-reported health status in adolescents with chronic health conditions before transfer of care to adult health care: an international cohort study.

    Kallio, Mira / Tornivuori, Anna / Miettinen, Päivi J / Kolho, Kaija-Leena / Relas, Heikki / Culnane, Evelyn / Loftus, Hayley / Sawyer, Susan M / Kosola, Silja

    BMC pediatrics

    2024  Volume 24, Issue 1, Page(s) 163

    Abstract: Background: Heath-related quality of life (HRQoL) is lower in adolescents with chronic health conditions compared to healthy peers. While there is evidence of some differences according to the underlying condition and gender, differences by measure and ... ...

    Abstract Background: Heath-related quality of life (HRQoL) is lower in adolescents with chronic health conditions compared to healthy peers. While there is evidence of some differences according to the underlying condition and gender, differences by measure and country are poorly understood. In this study we focus on the differences in HRQoL in adolescents with various chronic medical conditions in the year before transfer of care to adult health services. We also study the associations of two different HRQoL measurements to each other and to self-reported health.
    Methods: We recruited 538 adolescents from New Children`s Hospital, Helsinki, Finland, and the Royal Children`s Hospital, Melbourne, Australia in 2017-2020. We used two validated HRQoL measurement instruments, Pediatric Quality of Life Inventory (PedsQL) and 16D, and a visual analog scale (VAS) for self-reported health status.
    Results: In total, 512 adolescents (50.4% female, mean age 17.8 [SD 1.2] years), completed the survey measures. Higher HRQoL was reported in males than females in both countries (PedsQL 79.4 vs. 74.1; 16D 0.888 vs. 0.846), and in adolescents from Finland than Australia (80.6 vs. 72.2 and 0.905 vs. 0.825, p < 0.001 for all). Adolescents with diabetes, rheumatological, nephrological conditions and/or organ transplants had higher HRQoL than adolescents with neurological conditions or other disease syndromes (p < 0.001). PedsQL and 16D scores showed a strong correlation to each other (Spearman correlation coefficient r = 0.81). Using the 7-point VAS (1-7), 52% (248 of 479) considered their health status to be good (6-7) and 10% (48 of 479) rated it poor (1-2). Better self-reported health was associated with higher HRQoL.
    Conclusions: The HRQoL of transition aged adolescents varies between genders, diagnostic groups, and countries of residence. The association between self-reported health and HRQoL suggests that brief assessment using the VAS could identify adolescents who may benefit from in-depth HRQoL evaluation.
    Trial registration: Trial registration name The Bridge and registration number NCT04631965 ( https://clinicaltrials.gov/ct2/show/NCT04631965 ).
    MeSH term(s) Adolescent ; Adult ; Aged ; Child ; Female ; Humans ; Male ; Chronic Disease ; Cohort Studies ; Delivery of Health Care ; Health Status ; Quality of Life ; Self Report ; Surveys and Questionnaires
    Language English
    Publishing date 2024-03-08
    Publishing country England
    Document type Clinical Trial ; Journal Article
    ZDB-ID 2041342-7
    ISSN 1471-2431 ; 1471-2431
    ISSN (online) 1471-2431
    ISSN 1471-2431
    DOI 10.1186/s12887-024-04629-x
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: Transition readiness and anxiety among adolescents with a chronic condition and their parents: A cross-sectional international study.

    Tornivuori, Anna / Kallio, Mira / Culnane, Evelyn / Pasanen, Miko / Salanterä, Sanna / Sawyer, Susan / Kosola, Silja

    Journal of advanced nursing

    2023  Volume 80, Issue 2, Page(s) 756–764

    Abstract: Aims: To evaluate associations of age, transition readiness and anxiety in adolescents with chronic conditions and to compare perceptions of adolescents and their parents regarding health self-management and transition readiness.: Design: Cross- ... ...

    Abstract Aims: To evaluate associations of age, transition readiness and anxiety in adolescents with chronic conditions and to compare perceptions of adolescents and their parents regarding health self-management and transition readiness.
    Design: Cross-sectional international study, reported following STROBE guidelines.
    Methods: Adolescents and young adults (N = 512, mean age 17.7) with a chronic medical condition and their parents (N = 322) from Finland and Australia. Data were collected through surveys (between September 2017 and December 2020). Adolescents reported the duration of their condition. Age at survey was defined by the response date of the questionnaires. Validated questionnaires were used to measure transition readiness (Am I ON TRAC? for Adult Care) and anxiety related to transition of care (State-Trait Anxiety Inventory short form). Perceptions of health self-management and transition readiness were compared in adolescent/parent dyads. Associations were explored using Spearman's correlation.
    Results: Duration of condition and age at survey correlated weakly with transition readiness knowledge and behaviour. Higher transition readiness knowledge scores correlated with higher behaviour scores. Higher transition readiness behaviour scores were associated with lower levels of anxiety. Adolescents were less anxious than their parents and adolescents and parents mostly agreed about health self-management and transition readiness.
    Conclusion: Transition readiness should be determined by an assessment of knowledge, self-management and psychosocial skills instead of age alone. Further research should address how well transition readiness predicts positive health outcomes after the transfer of care.
    Implications for patient care: Transition readiness and self-management skills should be formally assessed because positive feedback may decrease the anxiety of both adolescents and their parents regarding the transfer of care.
    Reporting method: We have adhered to the STROBE statement, using STROBE checklist for cross-sectional studies.
    Patient or public involvement statement: No patient or public involvement.
    Trial and protocol registration: ClinicalTrials.org NCT04631965.
    MeSH term(s) Young Adult ; Humans ; Adolescent ; Cross-Sectional Studies ; Transition to Adult Care ; Surveys and Questionnaires ; Anxiety ; Chronic Disease ; Parents/psychology
    Language English
    Publishing date 2023-09-10
    Publishing country England
    Document type Journal Article
    ZDB-ID 197634-5
    ISSN 1365-2648 ; 0309-2402
    ISSN (online) 1365-2648
    ISSN 0309-2402
    DOI 10.1111/jan.15860
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: Disease control and psychiatric comorbidity among adolescents with chronic medical conditions: a single-centre retrospective study.

    Kallio, Mira / Tornivuori, Anna / Miettinen, Päivi / Kolho, Kaija-Leena / Culnane, Evelyn / Sawyer, Susan / Kosola, Silja

    BMJ paediatrics open

    2023  Volume 7, Issue 1

    Abstract: Background: To investigate disease control, psychiatric comorbidity, substance use and their possible associations in adolescents with chronic medical conditions before transfer to adult healthcare.: Methods: We collected clinical data from the year ... ...

    Abstract Background: To investigate disease control, psychiatric comorbidity, substance use and their possible associations in adolescents with chronic medical conditions before transfer to adult healthcare.
    Methods: We collected clinical data from the year preceding transfer of care and psychiatric data from the records of the paediatric hospital in Helsinki, Finland (population base 1.7 million). Participants were grouped into three disease and/or adherence control categories (good, some evidence of concern, poor) based on clinical data from the medical records of the year preceding the transfer of care. Participants completed the Adolescent's Substance Use Measurement Questionnaire before transfer of care and were divided into four risk subgroups accordingly.
    Results: In total, 253 adolescents (mean age 17.3 years, SD 1.2) from six paediatric subspecialties participated in this study. Disease control and/or adherence were rated as good in 28% (n=70), moderate in 42% (n=105) and poor in 30% (n=76) in the year before participants transferred to adult health services. A quarter of participants had at least one psychiatric diagnosis during adolescence. Adolescents with concomitant psychiatric diagnoses more often had poor disease control of their chronic medical condition than adolescents with only a medical condition (44% vs 26%; n=25 of 59 vs 51 of 194, respectively). More than half of adolescents (56%) were abstinent or used substances infrequently; 10% (n=26) reported hazardous substance use.
    Conclusions: Psychiatric comorbidity in adolescents with chronic medical conditions is common. Its negative association with disease control and possible substance use should be considered in the transition process to adult health services.
    MeSH term(s) Adult ; Humans ; Adolescent ; Child ; Retrospective Studies ; Comorbidity ; Substance-Related Disorders/epidemiology ; Chronic Disease ; Finland/epidemiology
    Language English
    Publishing date 2023-02-04
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ISSN 2399-9772
    ISSN (online) 2399-9772
    DOI 10.1136/bmjpo-2022-001605
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: Bridge study protocol: an international, observational cohort study on the transition of healthcare for adolescents with chronic conditions.

    Kosola, Silja / Culnane, Evelyn / Loftus, Hayley / Tornivuori, Anna / Kallio, Mira / Telfer, Michelle / Miettinen, Päivi J / Kolho, Kaija-Leena / Aalto, Kristiina / Raivio, Taneli / Sawyer, Susan

    BMJ open

    2021  Volume 11, Issue 6, Page(s) e048340

    Abstract: Introduction: More than 10% of adolescents live with a chronic disease or disability that requires regular medical follow-up as they mature into adulthood. During the first 2 years after adolescents with chronic conditions are transferred to adult ... ...

    Abstract Introduction: More than 10% of adolescents live with a chronic disease or disability that requires regular medical follow-up as they mature into adulthood. During the first 2 years after adolescents with chronic conditions are transferred to adult hospitals, non-adherence rates approach 70% and emergency visits and hospitalisation rates significantly increase. The purpose of the Bridge study is to prospectively examine associations of transition readiness and care experiences with transition success: young patients' health, health-related quality of life (HRQoL) and adherence to medical appointments as well as costs of care. In addition, we will track patients' growing independence and educational and employment pathways during the transition process.
    Methods and analysis: Bridge is an international, prospective, observational cohort study. Study participants are adolescents with a chronic health condition or disability and their parents/guardians who attended the New Children's Hospital in Helsinki, Finland, or the Royal Children's Hospital (RCH) in Melbourne, Australia. Baseline assessment took place approximately 6 months prior to the transfer of care and follow-up data will be collected 1 year and 2 years after the transfer of care. Data will be collected from patients' hospital records and from questionnaires completed by the patient and their parent/guardian at each time point. The primary outcomes of this study are adherence to medical appointments, clinical health status and HRQoL and costs of care. Secondary outcome measures are educational and employment outcomes.
    Ethics and dissemination: The Ethics Committee for Women's and Children's Health and Psychiatry at the Helsinki University Hospital (HUS/1547/2017) and the RCH Human Research Ethics Committee (38035) have approved the Bridge study protocol. Results will be published in international peer-reviewed journals and summaries will be provided to the funders of the study as well as patients and their parents/guardians.
    Trial registration number: NCT04631965.
    MeSH term(s) Adolescent ; Adult ; Humans ; Young Adult ; Australia ; Child Health ; Chronic Disease ; Delivery of Health Care ; Finland ; Observational Studies as Topic ; Prospective Studies ; Quality of Life ; Women's Health
    Language English
    Publishing date 2021-06-21
    Publishing country England
    Document type Clinical Trial Protocol ; Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2599832-8
    ISSN 2044-6055 ; 2044-6055
    ISSN (online) 2044-6055
    ISSN 2044-6055
    DOI 10.1136/bmjopen-2020-048340
    Database MEDical Literature Analysis and Retrieval System OnLINE

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