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2. Positive and negative survivor-specific psychosocial consequences of childhood cancer: the DCCSS-LATER 2 psycho-oncology study

Author

Maas, Anne, Maurice-Stam, Heleen, van der Aa-van Delden, Alied M., van Dalen, Elvira C., van Dulmen-den Broeder, Eline, Tissing, Wim J. E., Loonen, Jacqueline J., van der Pal, Helena J. H., de Vries, Andrica C. H., van den Heuvel-Eibrink, Marry M., Janssens, Geert O., Ronckers, Cécile, Neggers, Sebastian, Bresters, Dorine, Louwerens, Marloes, Versluys, Birgitta A. B., van der Heiden-van der Loo, Margriet, Kremer, Leontien C. M., van Gorp, Marloes, and Grootenhuis, Martha A.

Published
2024
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3. The impact of clinically relevant health conditions on psychosocial outcomes in survivors of childhood cancer: results of the DCCSS-LATER study

Author

Maas, Anne, Maurice-Stam, Heleen, Feijen, Lieke E.A.M., Teepen, Jop C., van der Aa-van Delden, Alied M., Streefkerk, Nina, van Dulmen-den Broeder, Eline, Tissing, Wim J. E., Loonen, Jacqueline J., van der Pal, Helena J. H., de Vries, Andrica C. H., van den Heuvel-Eibrink, Marry M., Ronckers, Cécile, Neggers, Sebastian, Bresters, Dorine, Louwerens, Marloes, Versluys, Birgitta A. B., van der Heiden-van der Loo, Margriet, Kremer, Leontien C. M., and Grootenhuis, Martha

Published
2024
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9. The course of health-related quality of life after the diagnosis of childhood cancer: a national cohort study

Author

van Gorp, Marloes, Irestorm, Elin, Twisk, Jos W. R., Dors, Natasja, Mavinkurve-Groothuis, Annelies, Meeteren, Antoinette Y. N. Schouten van, de Bont, Judith, van den Bergh, Esther M. M., van der Meer, Wietske van de Peppel, Beek, Laura R., Aarsen, Femke K., Streefkerk, Nienke, van Litsenburg, Raphaele R. L., and Grootenhuis, Martha A.

Published
2023
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11. A joint international consensus statement for measuring quality of survival for patients with childhood cancer

Author

van Kalsbeek, Rebecca J., Hudson, Melissa M., Mulder, Renée L., Ehrhardt, Matthew, Green, Daniel M., Mulrooney, Daniel A., Hakkert, Jessica, den Hartogh, Jaap, Nijenhuis, Anouk, van Santen, Hanneke M., Schouten-van Meeteren, Antoinette Y. N., van Tinteren, Harm, Verbruggen, Lisanne C., Conklin, Heather M., Jacola, Lisa M., Webster, Rachel Tillery, Partanen, Marita, Kollen, Wouter J. W., Grootenhuis, Martha A., Pieters, Rob, and Kremer, Leontien C. M.

Published
2023
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15. Author Correction: A joint international consensus statement for measuring quality of survival for patients with childhood cancer

Author

van Kalsbeek, Rebecca J., Hudson, Melissa M., Mulder, Renée L., Ehrhardt, Matthew, Green, Daniel M., Mulrooney, Daniel A., Hakkert, Jessica, den Hartogh, Jaap, Nijenhuis, Anouk, van Santen, Hanneke M., Schouten-van Meeteren, Antoinette Y. N., van Tinteren, Harm, Verbruggen, Lisanne C., Conklin, Heather M., Jacola, Lisa M., Webster, Rachel Tillery, Partanen, Marita, Kollen, Wouter J. W., Grootenhuis, Martha A., Pieters, Rob, and Kremer, Leontien C. M.

Published
2024
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16. Hydrocortisone to reduce dexamethasone-induced neurobehavioral side-effects in children with acute lymphoblastic leukaemia—results of a double-blind, randomised controlled trial with cross-over design

Author

van Hulst, Annelienke M., van den Akker, Erica L.T., Verwaaijen, Emma J., Fiocco, Marta, Rensen, Niki, van Litsenburg, Raphaële R.L., Pluijm, Saskia M.F., Zwaan, C. Michel, van Santen, Hanneke M., Pieters, Rob, Evers, Andrea W.M., Grootenhuis, Martha A., and van den Heuvel-Eibrink, Marry M.

Published
2023
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18. Psychosocial developmental milestones of young adult survivors of childhood cancer

Author

Maurice-Stam, Heleen, van Erp, Loes M. E., Maas, Anne, van Oers, Hedy A., Kremer, Leontien C. M., van Dulmen-den Broeder, Eline, Tissing, Wim J. E., Loonen, Jacqueline J., van der Pal, Helena J. H., Beek, Laura R., de Vries, Andrica C. H., van den Heuvel-Eibrink, Marry M., Ronckers, Cécile M., Bresters, Dorine, Louwerens, Marloes, van der Heiden-van der Loo, Margriet, Huizinga, Gea A., and Grootenhuis, Martha A.

Published
2022
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24. Risk and Protective Factors of Psychosocial Functioning in Survivors of Childhood Cancer: Results of the DCCSS‐LATER Study.

Author

Maas, Anne, Maurice‐Stam, Heleen, Feijen, E. A. M, Teepen, Jop C., van der Aa‐van Delden, Alied M., Streefkerk, Nina, van Dulmen‐den Broeder, Eline, Tissing, Wim J. E., Loonen, Jacqueline J., van der Pal, Helena J. H., de Vries, Andrica C. H., van den Heuvel‐Eibrink, Marry M., Ronckers, Cécile, Neggers, Sebastian, Bresters, Dorine, Louwerens, Marloes, Versluys, Birgitta A. B., van der Heiden‐van der Loo, Margriet, Kremer, Leontien C. M., and Grootenhuis, Martha

Abstract

Objective: This study examines the association between psychosocial risk and protective factors and a wide range of psychosocial outcomes including emotional, social, cognitive, and physical domains in childhood cancer survivors (CCS). Methods: CCS from the Dutch Childhood Cancer Survivor Study (DCCSS)‐LATER cohort (diagnosed 1963–2001) part 2 (age ≥ 18 years, diagnosed < 18 years, ≥ 5 years since diagnosis) completed questionnaires on psychosocial risk and protective factors (Benefit and Burden Scale, Illness Cognition Questionnaire, Rosenberg Self‐Esteem Scale, and Impact of Cancer Scale), and psychosocial outcomes (Hospital Anxiety and Depression Scale, Self‐Rating Scale for Post‐Traumatic Stress Disorder, TNO‐AZL Questionnaire for Adult Health‐Related Quality of Life, and Short Form‐36). Associations were assessed with regression analysis, adjusting for attained age, sex, number of health conditions, and time since diagnosis, while correcting for multiple testing (p < 0.004). Results: A total of 1382 CCS participated, all diagnosed ≥ 15 years ago. The mean age of participating CCS was 36 years, and 51% were female. Perceived benefit and burden, acceptance, and helplessness, self‐esteem and social support were associated with the psychosocial outcomes. In the models including all psychosocial factors, most associations with psychosocial outcomes were seen for self‐esteem (10×), and perceived burden (9×). Self‐esteem (all β ≤ 0.47) and perceived burden (all β ≤ 0.38) demonstrated strongest associations of medium/large size. Conclusions: Perceptions of childhood cancer, illness cognitions, self‐esteem, and social support play a role in explaining psychosocial functioning in CCS, outweighing the influence of socio‐demographic and medical variables. Addressing negative perceptions and reducing feelings of helplessness, while promoting acceptance, self‐esteem, and social support, could provide intervention targets for CCS who encounter psychosocial challenges. [ABSTRACT FROM AUTHOR]

Published
2024
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34. The development of fatigue after treatment for pediatric brain tumors does not differ between tumor locations

Author

P&O Programma's, Flex en UMCU-breed, Endocrinologie patientenzorg, Brain, Cancer, Child Health, Highfield Research Group, Speerpunt, Zorg en O&O, Irestorm, Elin, Schouten-van Meeteren, Antoinette Y.N., van Gorp, Marloes, Twisk, Jos W.R., van Santen, Hanneke M., Partanen, Marita, Grootenhuis, Martha A., van Litsenburg, Raphaele R.L., P&O Programma's, Flex en UMCU-breed, Endocrinologie patientenzorg, Brain, Cancer, Child Health, Highfield Research Group, Speerpunt, Zorg en O&O, Irestorm, Elin, Schouten-van Meeteren, Antoinette Y.N., van Gorp, Marloes, Twisk, Jos W.R., van Santen, Hanneke M., Partanen, Marita, Grootenhuis, Martha A., and van Litsenburg, Raphaele R.L.

Published
2024

35. Unraveling the relations between post-traumatic stress symptoms, neurocognitive functioning, and limbic white matter in pediatric brain tumor patients

Author

Beeldverwerking ISI, Brain, Cancer, MS Radiologie, Circulatory Health, Child Health, Leenders, Anne E M, Kremer-Hooft van Huijsduijnen, Eva, Robalo, Bruno, van Male, Rosa, De Luca, Alberto, Kemps, Rachèl, Hoving, Eelco, Lequin, Maarten H, Grootenhuis, Martha A, Partanen, Marita, Beeldverwerking ISI, Brain, Cancer, MS Radiologie, Circulatory Health, Child Health, Leenders, Anne E M, Kremer-Hooft van Huijsduijnen, Eva, Robalo, Bruno, van Male, Rosa, De Luca, Alberto, Kemps, Rachèl, Hoving, Eelco, Lequin, Maarten H, Grootenhuis, Martha A, and Partanen, Marita

Published
2024

36. The cumulative burden of self-reported, clinically relevant outcomes in long-term childhood cancer survivors and implications for survivorship care: A DCCSS LATER study

Author

Klinische Fysica RT, Speerpunt, Zorg en O&O, Cancer, Child Health, SCT patientenzorg, Haematologie patientenzorg, Endocrinologie patientenzorg, Brain, PMC Medisch specialisten, Streefkerk, Nina, Teepen, Jop C., Feijen, Elizabeth A.M., Jóźwiak, Katarzyna, van der Pal, Helena J.H., Ronckers, Cecile M., De Vries, Andrica C.H., Van der Heiden-van Der Loo, Margriet, Hollema, Nynke, van den Berg, Marleen, Loonen, Jacqueline, Grootenhuis, Martha A., Bresters, Dorine, Versluys, A. Brigitta, van Dulmen-den Broeder, Eline, van den Heuvel-Eibrink, Marry M., van Leeuwen, Flora E., Neggers, Sebastian J.C.M.M., Van Santen, Hanneke M., Hawkins, Mike, Hauptmann, Michael, Yoneoka, Daisuke, Korevaar, Joke C., Tissing, Wim J.E., Kremer, Leontien C.M., Klinische Fysica RT, Speerpunt, Zorg en O&O, Cancer, Child Health, SCT patientenzorg, Haematologie patientenzorg, Endocrinologie patientenzorg, Brain, PMC Medisch specialisten, Streefkerk, Nina, Teepen, Jop C., Feijen, Elizabeth A.M., Jóźwiak, Katarzyna, van der Pal, Helena J.H., Ronckers, Cecile M., De Vries, Andrica C.H., Van der Heiden-van Der Loo, Margriet, Hollema, Nynke, van den Berg, Marleen, Loonen, Jacqueline, Grootenhuis, Martha A., Bresters, Dorine, Versluys, A. Brigitta, van Dulmen-den Broeder, Eline, van den Heuvel-Eibrink, Marry M., van Leeuwen, Flora E., Neggers, Sebastian J.C.M.M., Van Santen, Hanneke M., Hawkins, Mike, Hauptmann, Michael, Yoneoka, Daisuke, Korevaar, Joke C., Tissing, Wim J.E., and Kremer, Leontien C.M.

Published
2024

38. Different subtypes of chronic fatigue in childhood cancer survivors:A DCCSS LATER study

Author

Penson, Adriaan, Walraven, Iris, Bronkhorst, Ewald, Grootenhuis, Martha A., Maurice-Stam, Heleen, Loo, Margriet van der Heiden van der, Tissing, Wim J.E., van der Pal, Helena J.H., de Vries, Andrica C.H., Bresters, Dorine, Ronckers, Cécile M., van den Heuvel-Eibrink, Marry M., Neggers, Sebastian, Versluys, Birgitta A.B., Louwerens, Marloes, Pluijm, Saskia M.F., Blijlevens, Nicole, van Dulmen-den Broeder, Eline, Kremer, Leontien C.M., Knoop, Hans, Loonen, Jacqueline, Penson, Adriaan, Walraven, Iris, Bronkhorst, Ewald, Grootenhuis, Martha A., Maurice-Stam, Heleen, Loo, Margriet van der Heiden van der, Tissing, Wim J.E., van der Pal, Helena J.H., de Vries, Andrica C.H., Bresters, Dorine, Ronckers, Cécile M., van den Heuvel-Eibrink, Marry M., Neggers, Sebastian, Versluys, Birgitta A.B., Louwerens, Marloes, Pluijm, Saskia M.F., Blijlevens, Nicole, van Dulmen-den Broeder, Eline, Kremer, Leontien C.M., Knoop, Hans, and Loonen, Jacqueline

Abstract

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 Strength (CIS) was completed to assess fatigue. Participants with CF (scored ≥35 on the fatigue severity subscale and indicated to suffer from fatigue for ≥6 months) were divided into subgroups using two-step cluster analysis based on the CIS concentration, motivation, and physical activity subscales. Differences between groups on demographics, psychosocial, lifestyle, and treatment-related variables were determined using ANOVA and chi-square analyses (univariable) and multinomial regression analysis (multivariable). Results: A total of 1910 participants participated in the current study (n = 450 with CF; n = 1460 without CF). Three CF subgroups were identified: Subgroup 1 (n = 133, 29% of participants) had CF with problems in physical activity; Subgroup 2 (n = 111, 25% of participants) had CF with difficulty concentrating; and Subgroup 3 (n = 206, 46% of participants) had multi-dimensional CF. Compared to Subgroup 1, Subgroup 2 more often reported sleep problems, limitations in social functioning, and less often have more than two comorbidities. Subgroup 3 more often reported depression, sleep problems, a lower self-esteem, and limitations in social functioning and a lower educational level compared to Subgroup 1. Conclusion: Different subgroups of CCS with CF can be identified based on fatigue dimensions physical activity, motivation and concentration. Results suggest that different intervention strategies, tailored for each subgroup, might be beneficial.

Published
2024

40. Pain monitoring app leads to less pain in children with cancer at home: Results of a randomized controlled trial.

Author

Simon, Julia D. H. P., Schepers, Sasja A., van Gorp, Marloes, Michiels, Erna M. C., Fiocco, Marta, Grootenhuis, Martha A., and Tissing, Wim J. E.

Subjects
CANCER pain, RANDOMIZED controlled trials, CHILDHOOD cancer, DUTCH people, MOBILE apps
Abstract

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 years old) receiving cancer treatment (≥3 months after diagnosis, ≥2 months treatment remaining). Children were randomly assigned to use the app or receive usual care (two parallel groups). We assessed whether use of the app yielded less clinically significant pain (aim 1) and whether it affected pain severity, duration, interference, pain management strategies, and parental emotional well‐being (aim 2). The app was also evaluated by families (aim 3). Results: A total of 94 children were randomized to use the app (15 drop‐outs), and 90 were to receive care as usual (11 drop‐outs). The app group (n = 79, mean age: 7.5 [5.1] years, 48% girls, 63% hemato‐oncology diagnosis) reported significantly less clinically significant pain compared to usual care (n = 79, mean age: 7.5 [5.4] years, 52% girls, 65% hemato‐oncology diagnosis) (odds ratio [OR], 0.38; 95% confidence interval [CI], 0.198–0.734]) (aim 1), as well as significantly lower pain severity (β = –0.27; 95% CI, –0.407 to –0.142). No differences were found for duration, interference, or management strategies. Parents in the app group reported significantly less distress compared to usual care (β = –0.84; 95% CI, –1.61 to –0.03]) (aim 2). Families generally evaluated the app positively (aim 3). Conclusions: Use of the app resulted in less clinically significant pain at home. The exact working mechanisms of the app should be further elucidated. Use of a pain monitoring app with educational information on pain (management) and real‐time health care professional feedback reduced clinically significant pain in children with cancer at home. [ABSTRACT FROM AUTHOR]

Published
2024
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41. Different subtypes of chronic fatigue in childhood cancer survivors: A DCCSS LATER study.

Author

Penson, Adriaan, Walraven, Iris, Bronkhorst, Ewald, Grootenhuis, Martha A., Maurice‐Stam, Heleen, Loo, Margriet van der Heiden‐van der, Tissing, Wim J. E., van der Pal, Helena J. H., de Vries, Andrica C. H., Bresters, Dorine, Ronckers, Cécile M., van den Heuvel‐Eibrink, Marry M., Neggers, Sebastian, Versluys, Birgitta A. B., Louwerens, Marloes, Pluijm, Saskia M. F., Blijlevens, Nicole, van Dulmen‐den Broeder, Eline, Kremer, Leontien C. M., and Knoop, Hans

Published
2024
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42. Physical frailty deteriorates after a 5‐day dexamethasone course in children with acute lymphoblastic leukemia, results of a national prospective study

Author

Verwaaijen, Emma J., primary, van Hulst, Annelienke M., additional, Hartman, Annelies, additional, Pieters, Rob, additional, Fiocco, Marta, additional, Pluijm, Saskia M. F., additional, van Litsenburg, Raphaële R. L., additional, Grootenhuis, Martha A., additional, van den Akker, Erica L. T., additional, and van den Heuvel‐Eibrink, Marry M., additional

Published
2023
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44. Methodology of the DCCSS later fatigue study: a model to investigate chronic fatigue in long-term survivors of childhood cancer

Author

Penson, Adriaan, van Deuren, Sylvia, Bronkhorst, Ewald, Keizer, Ellen, Heskes, Tom, Coenen, Marieke J. H., Rosmalen, Judith G. M., Tissing, Wim J. E., van der Pal, Helena J. H., de Vries, Andrica C. H., van den Heuvel-Eibrink, Marry M., Neggers, Sebastian, Versluys, Birgitta A. B., Louwerens, Marloes, van der Heiden-van der Loo, Margriet, Pluijm, Saskia M. F., Grootenhuis, Martha, Blijlevens, Nicole, Kremer, Leontien C. M., van Dulmen-den Broeder, Eline, Knoop, Hans, and Loonen, Jacqueline

Published
2021
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46. Matching Psychosocial Support Needs of Parents of a Child with a Chronic Illness to a Feasible Intervention

Author

Douma, Miriam, Bouman, Charlotte P., van Oers, Hedy A., Maurice-Stam, Heleen, Haverman, Lotte, Grootenhuis, Martha A., and Scholten, Linde

Subjects
Parents -- Psychological aspects -- Social aspects -- Health aspects, Chronically ill children -- Family, Health care industry
Abstract

Objectives Parents of children with a chronic illness (CI) are at risk for psychosocial problems. The aim of this study was to refine an existing face-to-face intervention into an online psychosocial group intervention for parents by (1) exploring which themes are important, (2) determine what type of intervention parents would like and (3) assess parents' practical preferences. Methods Parents of children with a CI (0-18 years) were invited to complete an online questionnaire. To acquire more in-depth information, focus groups and telephone interviews were conducted. Descriptive statistics were used. Results 272 parents (mean age = 43.1 years, 85% female) participated. Three focus groups (15 parents) and seven telephone interviews were conducted. Most important themes were: the CI of the child, family functioning, taking care of yourself, relationships with others and practical support. Parents preferred a group with parents of children in the same age category. At first, parents preferred face-to-face contact. After an explanation and demonstration of an online intervention, parents became more positive about online support, mostly because they could participate from home. Conclusions for Practice Parents have a need for psychosocial support focusing on different themes. Professionals should explain and demonstrate an online intervention to parents. Based on these results, Op Koers Online for parents was developed. An RCT to assess feasibility and effectiveness of the intervention is currently running., Author(s): Miriam Douma [sup.1] , Charlotte P. Bouman [sup.1] , Hedy A. van Oers [sup.1] , Heleen Maurice-Stam [sup.1] , Lotte Haverman [sup.1] , Martha A. Grootenhuis [sup.1] [sup.2] , [...]

Published
2020
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