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  • 1
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    Online Resource
    Late Endocrine Effects After HSCT in Children With Nonmalignant Diseases; A Single Center Cohort Analysis
    The Endocrine Society ; 2021
    In:  Journal of the Endocrine Society Vol. 5, No. Supplement_1 ( 2021-05-03), p. A668-A669
    Details
    In: Journal of the Endocrine Society, The Endocrine Society, Vol. 5, No. Supplement_1 ( 2021-05-03), p. A668-A669
    Abstract: Endocrine complications are amongst the most frequent late effects after pediatric hematopoietic stem cell transplantation (HSCT) for malignant diseases. Little is known about the prevalence and risk factors of endocrine complications in children transplanted for nonmalignant diseases. This retrospective study included 134 males and 63 females transplanted for a non-malignant disease between 1997 and 2018 with at least 2 years of follow up. Endocrine late effects and growth were evaluated. Gonadal dysfunction was defined as transient or permanent elevation of gonadotropins or hypogonadotropic hypogonadism. Median age at HSCT was 5.7 years (IQR 2.8-11.3) and median follow-up was 6.2 years (IQR 3.0-10.4). Underlying diseases were inborn errors of immunity (n=74), hemoglobinopathies (n=66) and bone marrow failure (n=57). The majority of patients had received busulfan-based conditioning (46%) or treosulfan-based conditioning (34%). Gonadal dysfunction occurred in 24/44 (post)pubertal female patients (55%) and was permanent in 19/44 (43%). 22/44 received hormonal substitution, which could be discontinued in 7. In females who received busulfan-based conditioning 16/17 (94%) developed gonadal dysfunction compared to 5/15 (33%) patients with treosulfan-based conditioning; the odds ratio for permanent gonadal dysfunction was 18.7 (3.61-135, p=0.001). Gonadal dysfunction occurred in 28/66 (post)pubertal male patients (42%) and was permanent in 23/66 (35%). 6/66 received hormonal substitution, which could be discontinued in 1. Gonadal dysfunction was more common in males (post)pubertal at HSCT, 14/21 (67%), compared to those prepubertal at HSCT, 14/45 (31%), p=0.014. 3/15 treated with a treosulfan-based regimen (20%) developed gonadal dysfunction, all transient, versus 19/39 with a busulfan-based regimen (49%), with 2 transient. 29/187 patients developed hypothyroidism (16%), 7 patients received thyroxine treatment (4%). All patients with persistent primary hypothyroidism (n=6) had positive TPO-antibodies. 17 patients received growth hormone treatment and were excluded from analysis. In patients without growth hormone treatment near adult height (NAH) was -1.2 SDS (median, IQR -2.0- -0.3) below mean parental height (MPH) in males and -0.4 SDS (median, IQR -1.6-0.3) in females. NAH below -2 SDS was seen in 13/43 males (30%) and 2/36 females (6%). The majority of these patients already had a height below -2 SDS before HSCT (73%). In conclusion, this study on late endocrine effects after HSCT in children with nonmalignant diseases indicates frequent gonadal dysfunction, present in 55% of females and 42% of males. In this cohort, risk of gonadal dysfunction in females was higher after busulfan-based conditioning than treosulfan-based conditioning. Careful long-term endocrine follow-up is indicated.
    Type of Medium: Online Resource
    ISSN: 2472-1972
    URL: Article
    DOI: 10.1210/jendso/bvab048.1364
    Language: English
    Publisher: The Endocrine Society
    Publication Date: 2021
    detail.hit.zdb_id: 2881023-5
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  • 2
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    Online Resource
    The value of using patient‐reported outcomes for health screening during long‐term follow‐up after paediatric stem cell transplantation for nonmalignant diseases
    Wiley ; 2024
    In:  Health Expectations Vol. 27, No. 1 ( 2024-02)
    Details
    In: Health Expectations, Wiley, Vol. 27, No. 1 ( 2024-02)
    Abstract: The assessment of using patient‐reported outcomes (PROs) within comprehensive care follow‐up programmes, specifically focused on health screening, remains largely unexplored. PROs were implemented in our late effects and comprehensive care programme after paediatric hematopoietic stem cell transplantation (HSCT) for nonmalignant diseases. The programme focuses solely on screening of physical and mental health and on discussing PROs during the consultation. Methods The primary method of this study was semistructured interviews to explore the perspective of both patients and healthcare providers' (HCP) on the use of PROs, which were thematically analyzed. Additionally, an explorative quantitative approach with patient‐reported experience measures (PREMS) was used, with a pretest–posttest design, to assess whether the use of PROs was accompanied by more patient‐centred care. Results From the patient‐interviews ( N = 15) four themes were extracted: use of PROs (1) help to discuss topics; (2) make the patients feel understood; (3) create a moment of self‐reflection; and (4) make consultations more efficient. Pre‐ and postimplementation analysis of PREMs ( N = 40) did not show significant differences in terms of patient‐centeredness. Conclusion Our results demonstrate the added value of integrating PROs for health screening purposes within the long‐term follow‐up programme after paediatric HSCT, as perceived by both patient and HCP. With the active use of PROs, patients are stimulated to consciously assess their health status. Patient Contribution This study included patients as participants. Caregivers were approached if patients were below a certain age. Additionally, preliminary results were shared with all patients (including nonparticipants) during a patient conference day.
    Type of Medium: Online Resource
    ISSN: 1369-6513 , 1369-7625
    URL: Issue
    URL: Article
    DOI: 10.1111/hex.v27.1
    DOI: 10.1111/hex.13902
    Language: English
    Publisher: Wiley
    Publication Date: 2024
    detail.hit.zdb_id: 2006357-X
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  • 3
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    Long‐term parental distress after pediatric hematopoietic stem cell transplantation for nonmalignant diseases
    Wiley ; 2023
    In:  Pediatric Blood & Cancer Vol. 70, No. 11 ( 2023-11)
    Details
    In: Pediatric Blood & Cancer, Wiley, Vol. 70, No. 11 ( 2023-11)
    Abstract: Survival rates have continued to increase for pediatric hematopoietic stem cell transplantation (HSCT) for nonmalignant diseases. Despite the crucial role of caregivers in this high‐intensity treatment, knowledge about long‐term parental impact is lacking. Procedure This cross‐sectional study assessed parental distress and everyday problems in parents of patients 2 years and older after pediatric HSCT for a nonmalignant disease using Distress Thermometer for Parents (DT‐P), and compared outcomes to matched Dutch parents of healthy children and Dutch parents of children with a chronic condition (CC). Results Median follow‐up was 5.3 years (interquartile range [IQR]: 2.9–8.6). Underlying diseases were inborn errors of immunity ( N  = 30), hemoglobinopathies ( N  = 13), and bone marrow failure ( N  = 27). Mothers of pediatric HSCT recipients ( N  = 70) reported comparable overall distress levels to mothers of healthy children, but experienced more distress related to parenting problems, specifically managing their child's emotions, discussing disease consequences, and fostering independence. Fathers of HSCT recipients ( N  = 45) reported higher overall distress levels and had more emotional distress compared to fathers of healthy children. Conclusions Overall, parental distress and everyday problems of parents of HSCT recipients are comparable to those of parents of children with CC. However, there is ongoing parental burden, both emotional and in parenting, long‐term after HSCT compared to parents of healthy children, and the type of burden differs between mothers and fathers. These results indicate that individualized parental supportive care should not remain restricted to the acute hospitalization phase, but also be actively offered during long‐term follow‐up after pediatric HSCT.
    Type of Medium: Online Resource
    ISSN: 1545-5009 , 1545-5017
    URL: Issue
    URL: Article
    DOI: 10.1002/pbc.v70.11
    DOI: 10.1002/pbc.30638
    Language: English
    Publisher: Wiley
    Publication Date: 2023
    detail.hit.zdb_id: 2130978-4
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  • 4
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    Online Resource
    Data_Sheet_1.docx
    Frontiers Media SA ; 2022
    In:  Frontiers in Psychology Vol. 13 ( 2022-8-18)
    Details
    In: Frontiers in Psychology, Frontiers Media SA, Vol. 13 ( 2022-8-18)
    Abstract: Coaching is a systematic and goal-oriented one-on-one intervention by a coach aimed to guide clients in their professional and personal development. Previous research on coaching has demonstrated effects on a number of positive outcomes, including well-being and performance, yet little is known about the processes that underlie these outcomes, such as the type of questions coaches use. Here, we focus on three different types of coaching questions, and aim to uncover their immediate and sustained effects for affect, self-efficacy, and goal-directed outcomes, using a between-subjects experiment. One hundred and eighty-three medical residents and PhD students from various medical centers and healthcare organizations in the Netherlands were recruited to participate in a self-coaching writing exercise, where they followed written instructions rather than interacting with a real coach. All participants were randomly allocated to one of three conditions: either one of two solution-focused coaching conditions (i.e., the success or miracle condition) or a problem-focused coaching condition. Self-report questionnaires were used to measure key outcomes of coaching, that is positive and negative affect, self-efficacy, goal orientation, action planning (i.e., quantity and quality) and goal attainment. Two follow-up measurements assessed if the effects of the self-coaching exercise led to problem-solving actions within an initial follow-up period of 14 days and a subsequent follow-up period of 10 days. Findings showed that participants experienced more positive affect, less negative affect, and higher approach goal orientation after the solution-focused coaching exercise compared to the problem-focused coaching exercise. In all conditions, goal attainment increased as a consequence of the self-coaching intervention. We discuss the implications of our findings for the science and practice of contemporary coaching.
    Type of Medium: Online Resource
    ISSN: 1664-1078
    URL: Article
    URL: Article
    DOI: 10.3389/fpsyg.2022.895439
    DOI: 10.3389/fpsyg.2022.895439.s001
    Language: Unknown
    Publisher: Frontiers Media SA
    Publication Date: 2022
    detail.hit.zdb_id: 2563826-9
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  • 5
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    Keep the fire burning: a survey study on the role of personal resources for work engagement and burnout in medical residents and specialists in the Netherlands
    BMJ ; 2019
    In:  BMJ Open Vol. 9, No. 11 ( 2019-11), p. e031053-
    Details
    In: BMJ Open, BMJ, Vol. 9, No. 11 ( 2019-11), p. e031053-
    Abstract: The high prevalence of burnout among medical residents and specialists raises concerns about the stressful demands in healthcare. This study investigated which job demands and job resources and personal resources are associated with work engagement and burnout and whether the effects of these demands and resources differ for medical residents and specialists. Design In a survey study among residents and specialists, we assessed job demands, job resources, personal resources, work engagement and burnout symptoms using validated questionnaires (January to December 2017). Results were analysed using multivariate generalised linear model, ordinary least squares regression analyses and path analyses. Setting Five academic and general hospitals in the Netherlands. Participants A total number of 124 residents and 69 specialists participated in this study. Participants worked in the fields of pediatrics, internal medicine and neurology. Results The associations of job and personal resources with burnout and work engagement differed for residents and specialists. Psychological capital was associated with burnout only for specialists ( b =−0.58, p 〈 0.001), whereas psychological flexibility was associated with burnout only for residents ( b =−0.31, p 〈 0.001). Colleague support ( b =0.49, p 〈 0.001) and self-compassion ( b =−0.33, p=0.004) were associated with work engagement only for specialists. Conclusion This study suggests that particularly personal resources safeguard the work engagement and lessen the risk of burnout of residents and specialists. Both residents and specialists benefit from psychological capital to maintain optimal functioning. In addition, residents benefit from psychological flexibility, while specialists benefit from colleague support. Personal resources seem important protective factors for physicians’ work engagement and well-being. When promoting physician well-being, a one-size-fits-all approach might not be effective but, instead, interventions should be tailored to the specific needs of specialists and residents.
    Type of Medium: Online Resource
    ISSN: 2044-6055 , 2044-6055
    URL: Article
    DOI: 10.1136/bmjopen-2019-031053
    Language: English
    Publisher: BMJ
    Publication Date: 2019
    detail.hit.zdb_id: 2599832-8
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  • 6
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    Medical students’ career decision-making stress during clinical clerkships
    Ubiquity Press, Ltd. ; 2022
    In:  Perspectives on Medical Education Vol. 11, No. 6 ( 2022-12-07), p. 350-358
    Details
    In: Perspectives on Medical Education, Ubiquity Press, Ltd., Vol. 11, No. 6 ( 2022-12-07), p. 350-358
    Abstract: Objectives Many medical students experience career decision-making stress in the final phase of training. Yet, the factors that induce or reduce career decision- making stress and how progression in their clerkships relates to these factors are unknown. This knowledge gap limits the possibilities for medical schools to develop and implement interventions targeting students’ career decision-making stress. This study explores content, process, and context factors that may affect career decision-making stress. Methods Using cross-sectional survey data from medical master students (n= 507), we assessed content (future work self ), process (choice irreversibility, time pressure, career decision-making self-efficacy), and context (supervisory support, medical school support, study load, competition) factors and their relationships with career decision-making stress. The hypothesized relationships were tested with structural equation modelling.  Results A clearer future work self and higher career decision self-efficacy were associated with lower career decision-making stress, while experienced time pressure, competition, and study load were associated with higher career decision-making stress. Choice-irreversibility beliefs, supervisory support, and medical school support were unrelated to career decision-making stress. As students’ clerkships progressed, they gained a clearer future work self, but also experienced more time pressure. Discussion Clinical clerkships help students to form a clearer future work self, which can diminish career decision-making stress. Yet, students also experience more time pressure as the period of clerkships lengthens, which can increase career decision-making stress. A school climate of high competition and study load seems to foster career decision-making stress, while school support hardly seems effective in diminishing this stress.
    Type of Medium: Online Resource
    ISSN: 2212-277X
    URL: Article
    DOI: 10.1007/s40037-022-00734-8
    Language: Unknown
    Publisher: Ubiquity Press, Ltd.
    Publication Date: 2022
    detail.hit.zdb_id: 2670231-9
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  • 7
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    Improving access to healthcare for paediatric sickle cell disease patients: a qualitative study on healthcare professionals’ views
    Springer Science and Business Media LLC ; 2021
    In:  BMC Health Services Research Vol. 21, No. 1 ( 2021-12)
    Details
    In: BMC Health Services Research, Springer Science and Business Media LLC, Vol. 21, No. 1 ( 2021-12)
    Abstract: In well-resourced countries, comprehensive care programs have increased life expectancy of patients with sickle cell disease, with almost all infants surviving into adulthood. However, families affected by sickle cell disease are more likely to be economically disenfranchised because of their racial or ethnic minority status. As every individual child has the right to the highest attainable standard of health under the United Nations Convention on the Rights of the Child, it is essential to identify both barriers and facilitators with regard to the delivery of adequate healthcare. Optimal healthcare accessibility will improve healthcare outcomes for children with sickle cell disease and their families. Healthcare professionals in the field of sickle cell care have first-hand experience of the barriers that patients encounter when it comes to effective care. We therefore hypothesised that these medical professionals have a clear picture of what is necessary to overcome these barriers and which facilitators will be most feasible. Therefore, this study aims to map best practises and lessons learnt in order to attain more optimal healthcare accessibility for paediatric patients with sickle cell disease and their families. Methods Healthcare professionals working with young patients with sickle cell disease were recruited for semi-structured interviews. An interview guide was used to ensure the four healthcare accessibility dimensions were covered. The interviews were transcribed and coded. Based on field notes, initial codes were generated, to collate data (both barriers and solutions) to main themes (such as “transportation”, or “telecommunication”). Through ongoing thematic analysis, definitive themes were formulated and best practices were reported as recommendations. Quotations were selected to highlight or illustrate the themes and link the reported results to the empirical data. Results In 2019, 22 healthcare professionals from five different university hospitals in the Netherlands were interviewed. Participants included (paediatric) haematologists, nurses and allied health professionals. Six themes emerged, all associated with best practices on topics related to the improvement of healthcare accessibility for children with sickle cell disease and their families. Firstly, the full reimbursement of invisible costs made by caregivers. Secondly, clustering of healthcare appointments on the same day to help patients seeing all required specialists without having to visit the hospital frequently. Thirdly, organisation of care according to shared care principles to deliver specialised services as close as possible to the patient’s home without compromising quality. Fourthly, optimising verbal and written communication methods with special consideration for families with language barriers, low literacy skills, or both. Fifthly, improving the use of eHealth services tailored to users’ health literacy skills, including accessible mobile telephone contact between healthcare professionals and caregivers of children with sickle cell disease. Finally, increasing knowledge and interest in sickle cell disease among key stakeholders and the public to ensure that preventive and acute healthcare measures are understood and safeguarded in all settings. Conclusion This qualitative study describes the views of healthcare professionals on overcoming barriers of healthcare accessibility that arise from the intersecting vulnerabilities faced by patients with sickle cell disease and their families. The recommendations gathered in this report provide high-income countries with a practical resource to meet their obligations towards individual children under the United Nations Convention on the Rights of the Child.
    Type of Medium: Online Resource
    ISSN: 1472-6963
    URL: Article
    DOI: 10.1186/s12913-021-06245-2
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 2050434-2
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  • 8
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    Online Resource
    Physician exhaustion and work engagement during the COVID-19 pandemic: A longitudinal survey into the role of resources and support interventions
    Public Library of Science (PLoS) ; 2023
    In:  PLOS ONE Vol. 18, No. 2 ( 2023-2-1), p. e0277489-
    Details
    In: PLOS ONE, Public Library of Science (PLoS), Vol. 18, No. 2 ( 2023-2-1), p. e0277489-
    Abstract: Physicians increasingly show symptoms of burnout due to the high job demands they face, posing a risk for the quality and safety of care. Job and personal resources as well as support interventions may function as protective factors when demands are high, specifically in times of crisis such as the COVID-19 pandemic. Based on the Job Demands-Resources theory, this longitudinal study investigated how monthly fluctuations in job demands and job and personal resources relate to exhaustion and work engagement and how support interventions are associated with these outcomes over time. Methods A longitudinal survey consisting of eight monthly measures in the period 2020–2021, completed by medical specialists and residents in the Netherlands. We used validated questionnaires to assess job demands (i.e., workload), job resources (e.g., job control), personal resources (e.g., psychological capital), emotional exhaustion, and work engagement. Additionally, we measured the use of specific support interventions (e.g., professional support). Multilevel modeling and longitudinal growth curve modeling were used to analyze the data. Results 378 medical specialists and residents were included in the analysis (response rate: 79.08%). Workload was associated with exhaustion ( γ = .383, p 〈 .001). All job resources, as well as the personal resources psychological capital and self-judgement were associated with work engagement ( γs ranging from -.093 to .345, all p s 〈 .05). Job control and psychological capital attenuated the workload-exhaustion relationship while positive feedback and peer support strengthened it (all p s 〈 .05). The use of professional support interventions (from a mental health expert or coach) was related to higher work engagement ( estimate = .168, p = .032) over time. Participation in organized supportive group meetings was associated with higher exhaustion over time ( estimate = .274, p = .006). Conclusions Job and personal resources can safeguard work engagement and mitigate the risk of emotional exhaustion. Professional support programs are associated with higher work engagement over time, whereas organized group support meetings are associated with higher exhaustion. Our results stress the importance of professional individual-level interventions to counteract a loss of work engagement in times of crisis.
    Type of Medium: Online Resource
    ISSN: 1932-6203
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    DOI: 10.1371/journal.pone.0277489
    DOI: 10.1371/journal.pone.0277489.g001
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    Language: English
    Publisher: Public Library of Science (PLoS)
    Publication Date: 2023
    detail.hit.zdb_id: 2267670-3
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  • 9
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    Turning the tide: a quasi-experimental study on a coaching intervention to reduce burn-out symptoms and foster personal resources among medical residents and specialists in the Netherlands
    BMJ ; 2021
    In:  BMJ Open Vol. 11, No. 1 ( 2021-01), p. e041708-
    Details
    In: BMJ Open, BMJ, Vol. 11, No. 1 ( 2021-01), p. e041708-
    Abstract: Physician burn-out is increasing, starting already among residents. The consequences of burn-out are not limited to physicians’ well-being, they also pose a threat to patient care and safety. This study investigated the effectiveness of a professional coaching intervention to reduce burn-out symptoms and foster personal resources in residents and specialists. Design In a controlled field experiment, medical residents and specialists received six coaching sessions, while a control group did not undergo any treatment. The authors assessed burn-out symptoms of exhaustion and cynicism, the personal resources psychological capital, psychological flexibility and self-compassion, as well as job demands and job resources with validated questionnaires (January 2017 until August 2018). The authors conducted repeated measures analyses of variance procedures to examine changes over time for the intervention and the control group. Setting Four academic hospitals in the Netherlands. Participants A final sample of 57 residents and specialists volunteered in an individual coaching programme. A control group of 57 physicians did not undergo any treatment. Intervention Coaching was provided by professional coaches during a period of approximately 10 months aiming at personal development and growth. Results The coaching group (response rate 68%, 57 physicians, 47 women) reported a reduction in burn-out symptoms and an increase in personal resources after the coaching intervention, while no such changes occurred in the control group (response rate 35%, 42 women), as indicated by significant time × group interactions, all p 〈 0.01. Specifically, physicians increased their psychological capital (η p 2 =0.139), their self-compassion (η p 2 =0.083), and reported significantly less exhaustion (η p 2 =0.126), the main component of the burn-out syndrome. Conclusion This study suggests that individual coaching is a promising route to reduce burn-out symptoms in both residents and specialists. Moreover, it strengthens personal resources that play a crucial role in the prevention of burn-out.
    Type of Medium: Online Resource
    ISSN: 2044-6055 , 2044-6055
    URL: Article
    DOI: 10.1136/bmjopen-2020-041708
    Language: English
    Publisher: BMJ
    Publication Date: 2021
    detail.hit.zdb_id: 2599832-8
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  • 10
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    Online Resource
    Silent cerebral infarcts in patients with sickle cell disease: a systematic review and meta-analysis
    Springer Science and Business Media LLC ; 2020
    In:  BMC Medicine Vol. 18, No. 1 ( 2020-12)
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    In: BMC Medicine, Springer Science and Business Media LLC, Vol. 18, No. 1 ( 2020-12)
    Abstract: Silent cerebral infarcts (SCIs) are the most common neurological complication in children and adults with sickle cell disease (SCD). In this systematic review, we provide an overview of studies that have detected SCIs in patients with SCD by cerebral magnetic resonance imaging (MRI). We focus on the frequency of SCIs, the risk factors involved in their development and their clinical consequences. Methods The databases of Embase, MEDLINE ALL via Ovid, Web of Science Core Collection, Cochrane Central Register of Trials via Wiley and Google Scholar were searched from inception to June 1, 2019. Results The search yielded 651 results of which 69 studies met the eligibility criteria. The prevalence of SCIs in patients with SCD ranges from 5.6 to 80.6% with most studies reported in the 20 to 50% range. The pooled prevalence of SCIs in HbSS and HbSβ 0 SCD patients is 29.5%. SCIs occur more often in patients with the HbSS and HbSβ 0 genotype in comparison with other SCD genotypes, as SCIs are found in 9.2% of HbSC and HbSβ + patients. Control subjects showed a mean pooled prevalence of SCIs of 9.8%. Data from included studies showed a statistically significant association between increasing mean age of the study population and mean SCI prevalence. Thirty-three studies examined the risk factors for SCIs. The majority of the risk factors show no clear association with prevalence, since more or less equal numbers of studies give evidence for and against the causal association. Conclusions This systematic review and meta-analysis shows SCIs are common in patients with SCD. No clear risk factors for their development were identified. Larger, prospective and controlled clinical, neuropsychological and neuroimaging studies are needed to understand how SCD and SCIs affect cognition.
    Type of Medium: Online Resource
    ISSN: 1741-7015
    URL: Article
    DOI: 10.1186/s12916-020-01864-8
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2020
    detail.hit.zdb_id: 2131669-7
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