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Martha A Grootenhuis

Martha A Grootenhuis
princess Maxima Centre for Pediatric Oncology · Psycho-Oncology

Professor

About

455
Publications
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Publications

Publications (455)
Article
Background A pediatric cancer diagnosis is overwhelming and stressful for the whole family. Patient‐centered communication during the diagnostic conversation can support medical and psychosocial adaptation to the disease. Treatment of pediatric leukemia has become increasingly complex and requires a specific skillset from clinicians in effectively...
Article
Recordings of patient–doctor interactions is a recommended method in communication research. However, concerns are expressed regarding audio‐recording of conversations with vulnerable patients. Our study examined experiences of children, parents, and oncologists with recording diagnostic conversations in the pediatric acute leukemia setting. Result...
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Objective: This article aims to share the lessons we have learned during 25 years of development, research, and implementation related to a psychosocial group intervention for children with chronic illness and their families called Op Koers (“On Track” in English). Method: Using the National Institutes of Health Stage Model for Behavioral Intervent...
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Purpose As patient-reported outcome measures (PROMs) are increasingly used in clinical practice for screening, monitoring, and management, the potential for response bias has been raised (e.g., over-reporting problems for attention, under-reporting to avoid treatment changes/discontinuation). We investigated whether patients systematically bias the...
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Background Many studies highlight poor health‐related quality of life (HRQoL) in children treated for brain tumours and their parents. However, little is known about the extent to which their informational, healthcare and communication needs regarding HRQoL are met during medical outpatient consultations. Aim To explore the experiences of families...
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Background: Children and adolescents treated for a brain tumor suffer from more fatigue than survivors of other types of childhood cancer. As tumor location might be predictive of fatigue, our aim was to investigate the longitudinal development of fatigue in children with brain tumors and risk factors for fatigue separately for different tumor loca...
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Introduction The aim of the current study was to investigate whether subtypes of chronic fatigue (CF) can be identified in childhood cancer survivors (CCS), and if so, to determine the characteristics of participants with a specific subtype. Methods Participants were included from the nationwide DCCSS LATER cohort. The Checklist Individual Strengt...
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This study explored the experiences and needs of adolescents, ranging from 12 to 18 years old, who have recently been diagnosed with cancer and participated in a nationwide germline genetic sequencing study within the context of pediatric oncology. The 21 adolescents in this qualitative interview study viewed genetic sequencing as an integral part...
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Background Pediatric brain tumor patients are at risk of developing neurocognitive impairments and associated white matter alterations. In other populations, post-traumatic stress symptoms (PTSS) impact cognition and white matter. This study aims to investigate the effect of PTSS on neurocognitive functioning and limbic white matter in pediatric br...
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Objective Parents of children with cancer are at risk for developing psychosocial problems. The present study aims to evaluate the effect of an online group intervention (Op Koers Online, in English: On Track Online) on psychosocial wellbeing and coping skills. Methods Parents of a child with cancer (diagnosis <5 years ago) participated in a rando...
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Background Dexamethasone is important in the treatment for pediatric acute lymphoblastic leukemia (ALL) but induces muscle atrophy with negative consequences for muscle mass, muscle strength, and functional abilities. The aim of this study was to establish the effect of a dexamethasone course on sarcopenia and physical frailty in children with ALL,...
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Background The authors developed a pain monitoring app offering educational information, and real‐time health care professional feedback on clinically significant pain (>4 numeric rating scale [NRS]‐11) for children with cancer to reduce pain at home. Methods This monocenter, nonblinded randomized controlled trial enrolled Dutch children (0–18 yea...
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Background: The purpose of this study was to determine factors associated with chronic fatigue (CF) in childhood cancer survivors (CCS). Patients and methods: Participants were included from the Dutch Childhood Cancer Survivor Study (DCCSS) LATER cohort, a nationwide cohort of CCS (!5 years after diagnosis) and siblings as controls. Fatigue severit...
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Objectives Health-related quality of life (HRQoL) is impaired in paediatric patients with acute lymphoblastic leukaemia (ALL). Over the past decades, ALL treatment has successfully been adjusted to the risk of relapse, which is now reflected by the stratification of patients into three risk groups who receive treatment of differing intensities. Thi...
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Background & aims: Children with acute lymphoblastic leukemia (ALL) receive high doses dexamethasone during treatment, which induce acute side effects. The aims of the current study were to determine the influence of a five-day dexamethasone course on changes in leptin, fat mass, BMI, hunger, sleep and fatigue and to explore associations between t...
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Background: Comprehensive insight in the longitudinal development of health-related quality of life (HRQOL) after childhood cancer diagnosis could improve quality of care. Thus, we aimed to study the course and biopsychosocial determinants of HRQOL in a unique national cohort of children with cancer. Methods: HRQOL of 2154 children with cancer w...
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Background During treatment for acute lymphoblastic leukaemia (ALL), children are prone to musculoskeletal deterioration. However, non‐invasive tools to measure muscle mass and intramuscular alterations are limited. In this study we explored the feasibility of muscle ultrasound in children with ALL. Additionally, we analysed whether automated ultra...
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Background/objectives: Children treated for cancer are at risk to develop cognitive problems. Insight in underlying associations with emotional functioning and fatigue can be used to optimize interventions. We therefore aim to study emotional functioning, fatigue, and cognitive functioning in children postcancer treatment and investigate whether f...
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Objective: To describe psychosocial outcomes among adult siblings of very long-term childhood cancer survivors (CCS), to compare these outcomes to reference populations and to identify factors associated with siblings' psychosocial outcomes. Methods: Siblings of survivors (diagnosed <18 years old, between 1963 and 2001, >5 years since diagnosis)...
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The aim of treating childhood cancer remains to cure all. As survival rates improve, long-term health outcomes increasingly define quality of care. The International Childhood Cancer Outcome Project developed a set of core outcomes for most types of childhood cancers involving relevant international stakeholders (survivors; pediatric oncologists; o...
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Purpose: Dexamethasone, the preferred corticosteroid in most treatment protocols for pediatric acute lymphoblastic leukemia (ALL), can induce undesirable side effects. Neurobehavioral and sleep problems are frequently reported, but the interpatient variability is high. We therefore aimed to identify determinants for parent-reported dexamethasone-i...
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Purpose Numerous studies investigated generic psychosocial outcomes in survivors of childhood cancer (CCS). The present study aimed to describe survivor-specific psychosocial consequences in CCS, and to identify socio-demographic and medical associated factors. Methods CCS from the Dutch Childhood Cancer Survivor Study (DCCSS)-LATER cohort (diagno...
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Background: Childhood cancer survivors appear to be at increased risk of frailty and sarcopenia, but evidence on the occurrence of and high-risk groups for these aging phenotypes is scarce, especially in European survivors. The aim of this cross-sectional study was to assess the prevalence of and explore risk factors for pre-frailty, frailty, and...
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Background: Dexamethasone is a cornerstone of paediatric acute lymphoblastic leukaemia (ALL) treatment, although it can induce serious side-effects. Our previous study suggests that children who suffer most from neurobehavioural side-effects might benefit from physiological hydrocortisone in addition to dexamethasone treatment. This study aimed to...
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Background: In the last decades, pediatric patient engagement has received growing attention and its importance is increasingly acknowledged. Pediatric patient engagement in health care can be defined as the involvement of children and adolescents in the decision-making of daily clinical care, research and intervention development. Although more a...
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Purpose We aimed to systematically identify and characterize existing digital health tools for pain monitoring in children with cancer, and to assess common barriers and facilitators of implementation. Methods A comprehensive literature search (PubMed, Cochrane, Embase, and PsycINFO) was carried out to identify published research on mobile apps an...
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Aim: Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life. Methods: A grounded theory study was performed, using semi-structured interviews with parents during th...
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Background: Adverse late health outcomes after multimodal treatment for pediatric cancer are diverse and of prime interest. Currently available evidence and survivorship care guidelines are largely based on studies addressing side-effects of two dimensional planned radiotherapy. Aims: The Dutch pediatric 3D-planned radiotherapy (3D-RT) study aim...
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In addition to optimising survival of children with rhabdomyosarcoma (RMS), more attention is now focused on improving their quality of life (QOL) and reducing symptoms during treatment, palliative care or into long-term survivorship. QOL and ongoing symptoms related to the disease and its treatment are outcomes that should ideally be patient-repor...
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Background: Young adult childhood cancer survivors (YACCS) are a vulnerable group in need of psychosocial support, but tailored interventions are lacking. Aim: To examine feasibility and satisfaction, and to explore preliminary effectiveness of an online group intervention (Op Koers Online for YACCS) aimed at teaching active coping skills and pr...
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Objective Fatigue is one of the most prevalent and distressing symptoms reported by survivors of childhood cancer. There is currently a lack of longitudinal studies on cancer-related fatigue, and especially on the relationship between the course of fatigue during treatment and fatigue at follow-up. The purpose of the current study was therefore to...
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Objective: To describe HRQoL, post-traumatic stress and post-traumatic growth of parents of long-term survivors of childhood cancer and study associated factors. Methods: Parents of survivors of the Dutch Childhood Cancer Survivor Study LATER cohort below 30 years and diagnosed 1986-2001 were invited to complete the TNO-AZL Questionnaire for Adu...
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Introduction: Adverse events (AE) of treatment are prevalent and diverse in head and neck rhabdomyosarcoma (HNRMS) survivors. These AEs are often reported by physicians; however, patients' perceptions of specific AE are not well known. In this study, we explored patient-reported outcomes measuring appearance, health-related quality of life (HRQOL)...
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Objectives: Children with cancer often experience sleep problems, which are associated with many negative physical and psychological health outcomes, as well as with a lower quality of life. Therefore, interventions are strongly required to improve sleep in this population. We evaluated interactive education with respect to sleep hygiene with a so...
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Purpose The study aimed to compare the psychosocial development of young adult survivors of childhood cancer (YACCS) with a norm group of young adults from the general population. Methods From 2017 to 2020, 558 YACCS (18–30 years, 51% female, 10.9% CNS cancer) who participated in the Dutch Childhood Cancer Survivor Study (DCCSS) LATER cohort (diag...
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Insomnia symptoms and daytime fatigue commonly occur in pediatric oncology, which significantly impact physical and psychosocial health. This study evaluated the prevalence of insomnia only, daytime fatigue only, the co-occurrence of insomnia–daytime fatigue symptoms, and associated risk factors. Childhood cancer patients (n = 565, 12–26 years old,...
Preprint
Background. Children with a brain tumor are at risk of developing sleep problems. It remains unclear whether these problems arise at an early or later stage, and insights can facilitate timely interventions. The aim of this study is to examine sleep problems and contributing factors shortly after diagnosis. Methods. Children 6-16 years with a newly...
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Background Engaging patients in health care, research and policy is essential to improving patient‐important health outcomes and the quality of care. Although the importance of patient engagement is increasingly acknowledged, clinicians and researchers still find it difficult to engage patients, especially paediatric patients. To facilitate the eng...
Preprint
BACKGROUND Pain is one of the most common and distressing symptoms during childhood cancer treatment, yet pain management is still suboptimal in the home setting. Over the past years, there has been an increase in the amount of digital health tools that have been developed to monitor pain in this population, with the ultimate goal of improving pain...
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This study's aim is to evaluate the psychometric properties of the pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) sleep disturbance (SD), sleep-related impairment (SRI), and fatigue item banks in Dutch children and adolescents since they are yet to be validated in this population. Children and adolescents aged 8-18 year...
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Background: Early detection and management of late effects of treatment and their impact on health-related quality of life (HRQOL) has become a key goal of childhood cancer survivorship care. One of the most prevalent late effects is chronic fatigue (CF). The current study aimed to investigate the association between CF and HRQOL in a nationwide c...
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Surviving childhood cancer and surviving cancer in adolescence or young adulthood may present with psychosocial similarities and differences. A clearer delineation for these 2 groups is warranted.
Preprint
Background Childhood cancer survivors face late health problems; despite advances in research, details on risk remain unclear. We describe the methodological aspects of the Dutch Childhood Cancer Survivor Study (DCCSS) cross-sectional clinical study (LATER 2 study). Procedure From the multi-center DCCSS LATER cohort of 6,165 five-year survivors dia...
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In this cross-sectional study, we aimed to assess the reliability, validity, and efficiency of the Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Global Health scale (PGH-7) to reduce patient burden when assessing overall health in clinical practice. In total, 1082 children (8–18), representative of the Dutch population...
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Background Studies about support needs of young adult childhood cancer survivors (YACCS) previously focused mainly on information needs. This study assessed support needs and associated factors (sociodemographic, medical, and psychosocial functioning) in Dutch YACCS. Methods YACCS (aged 18–30, diagnosed ≤ 18 years, time since diagnosis ≥ 5 years)...
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We aimed to describe the opinions of health care providers in pediatric oncology regarding social robots and to examine differences in their opinions based on their background characteristics. Health care providers working in pediatric oncology care were approached globally to participate online in a cross-sectional questionnaire study with multipl...
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This multi-center cohort-study examined late mortality among 6,165 Dutch five-year childhood cancer survivors diagnosed 1963-2001. Clinical details and cause of death were based on medical records. Mortality was 12-fold that of the general population, with 51.3 additional deaths per 10,000 person-years (21.9 yrs median follow-up). Cumulative mortal...
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Background: Sleep disorders negatively impact adolescent and young adult childhood cancer patients' physical and psychosocial health. Early recognition improves timely treatment. We therefore studied the prevalence of subjective sleep disorders, risk factors and sleep treatment needs after completion of childhood cancer treatment. Methods: Child...
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We compared psychosocial functioning of children with cancer and their caregivers in several phases of the coronavirus disease 2019 (COVID-19) pandemic to before COVID-19. One or more questionnaires on health-related quality of life (HRQoL) or fatigue of children or distress of their caregivers was available from 1644 families. In children with can...
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Introduction The KLIK Patient Reported Outcome Measures (PROM) portal (www.hetklikt.nu) has been implemented since 2011 in clinical practice in over 20 Dutch hospitals. Patients and/or parents complete PROMs before the outpatient consultation and answers are subsequently discussed by clinicians during consultation. This study aims to provide insigh...
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Background Fatigue is often reported by patients with childhood cancer both during and after cancer treatment. Several instruments to measure fatigue exist, although none are specifically validated for use in childhood cancer survivors (CCS). The aim of the current study was to present norm values and psychometric properties of the Checklist Indivi...
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Purpose This study assessed adherence to, feasibility of, and barriers and facilitators of implementation of an app developed to monitor and follow-up with pain in children with cancer at home. Methods Children (8–18 years) receiving cancer treatment (all diagnoses) or their parents (of children aged 0–7 years) used the KLIK Pain Monitor app for 3...
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Background To reduce the burden of completing Patient-Reported Outcome Measures (PROMs), PROMIS® Computerized Adaptive Tests (CATs) are being implemented in pediatric clinical practice. We aimed to develop recommendations for visual feedback options for PROMIS CATs on individual item and domain score level as an evidence-based feedback recommendati...
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Background The objective of this study was to compare the health‐related quality of life (HRQOL) of Dutch adult male and female childhood cancer survivors (CCSs) to general population references and to study medical determinants. Methods CCSs from the Dutch Childhood Cancer Survivor Study LATER cohort (1963‐2001) part 2, who were 18 years old or o...
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PurposeSince 2011, the evidence-based KLIK Patient Reported Outcome Measure (PROM) portal has been implemented in clinical practice in > 20 Dutch hospitals. Patients and/or parents complete PROMs on Health Related Quality of Life, symptoms and psychosocial functioning before their outpatient consultation. Answers are converted into an ePROfile and...
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PurposeThe KLIK Patient-Reported Outcome Measure (PROM) portal is an evidence-based intervention implemented in clinical practice in > 25 Dutch hospitals for patients (children and adults) who regularly visit the outpatient clinic. Implementation science frameworks can be used to understand why implementation succeeded or failed, to structure barri...
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Background Cancer‐related fatigue is a debilitating late effect after treatment for childhood cancer. The prevalence of fatigue in childhood cancer survivors (CCSs) and associated factors for fatigue has varied widely in previous studies. Two important aspects of cancer‐related fatigue, its severity and chronicity, are often not assessed. This stud...
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Background Dexamethasone, a highly effective drug in treating pediatric acute lymphoblastic leukemia (ALL), can induce serious neurobehavioral side effects. These side effects are experienced by patients and parents as detrimental with respect to health related quality of life (HRQoL). Based on previous studies, it has been suggested that neurobeha...
Preprint
We compared psychosocial functioning of children with cancer and their caregivers in several phases of the COVID-19 pandemic to before COVID-19. One or more questionnaires on health-related quality of life (HRQoL) or fatigue of children or distress of their caregivers was available from 1644 families. In children with cancer, HRQoL was stable throu...
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BACKGROUND Survivors of childhood brain tumours are at risk of poor health-related quality of life (HRQoL). Appropriate and relevant measures can be used to monitor HRQoL so that timely interventions may be made for issues thus identified. We had previously selected patient-reported outcome measures (PROMs) with good psychometric properties that ha...
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Purpose Optimal sleep helps parents and children cope with life-threatening disease. However, hospital-surroundings are noisy, negatively affecting sleep quality and quantity. We aimed to determine sleep quantity; sleep satisfaction; their relation to infusionpump alarms in pediatric cancer patients and parents; and sleep quality and daytime impair...
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Purpose It is important to support families in dealing with the distress that comes along with the diagnosis and treatment of childhood cancer. Therefore, we developed a playful tool that families can use at home to support their family functioning and safeguard their normal family life. We pilot tested this new tool called Mr.V and describe how fa...