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2. Chronic fatigue in childhood cancer survivors is associated with lifestyle and psychosocial factors; a DCCSS LATER study

Author

Penson, A., Walraven, I., Bronkhorst, E., Grootenhuis, M.A., Maurice-Stam, H., de Beijer, I., van der Heiden-van der Loo, M., Tissing, W.J.E., van der Pal, H.J.H., de Vries, A.C.H., Bresters, D., Ronckers, C.M., van den Heuvel-Eibrink, M.M., Neggers, S., Versluys, B.A.B., Louwerens, M., Pluijm, S.M.F., Blijlevens, N., van Dulmen-den Broeder, E., Kremer, L.C.M., Knoop, H., and Loonen, J.

Published
2023
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4. Duizeligheid

Author

Maarsingh, O. R., Stam, H., van Vugt, V. A., de Jongh, T.O.H., editor, de Vries, H., editor, Knottnerus, B.J., editor, Keurlings, P.A.J., editor, Damen, J., editor, and Reinders, M.E., editor

Published
2021
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5. Health-related quality of life in Dutch adult survivors of childhood cancer: A nation-wide cohort study

Author

van Erp, L.M.E., Maurice-Stam, H., Kremer, L.C.M., Tissing, W.J.E., van der Pal, H.J.H., de Vries, A.C.H., van den Heuvel-Eibrink, M.M., Versluys, B.A.B., Loonen, J.J., Bresters, D., Louwerens, M., van der Heiden-van der Loo, M., van den Berg, M.H., Ronckers, C.M., van der Kooi, A.L.L.F., van Gorp, M., van Dulmen-den Broeder, E., and Grootenhuis, M.A.

Published
2021
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10. Frailty and sarcopenia within the earliest national Dutch childhood cancer survivor cohort (DCCSS-LATER)

Author

Atteveld, Jenneke van, Winter, D.T.C. de, Pluimakers, V.G., Fiocco, M., Nievelstein, R.A., Hobbelink, M.G., Kremer, L.C.M., Grootenhuis, M.A., Maurice-Stam, H., Tissing, W.J.E., Vries, A.C.M. de, Loonen, J.J., Dulmen-den Broeder, E. van, Pal, H.J. van der, Pluijm, S.M.F., Heiden-van der Loo, M., Versluijs, A.B., Louwerens, M., Bresters, D., Santen, H.M. van, Hoefer, I., Berg, S.A. van den, Hartogh, J. den, Hoeijmakers, J.H.J., Neggers, S.J., Heuvel-Eibrink, M.M. van den, Pediatrics, CCA - Cancer Treatment and quality of life, Amsterdam Reproduction & Development (AR&D), Clinical Chemistry, Internal Medicine, and Molecular Genetics

Subjects
Psychiatry and Mental health, All institutes and research themes of the Radboud University Medical Center, Health (social science), SDG 3 - Good Health and Well-being, Geriatrics and Gerontology, Family Practice, Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18]
Abstract

Contains fulltext : 291552.pdf (Publisher’s version ) (Open Access) 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 sarcopenia in a national cohort of Dutch childhood cancer survivors diagnosed between 1963 and 2001. METHODS: Eligible individuals (alive at the time of study, living in the Netherlands, age 18-45 years, and had not previously declined to participate in a late-effects study) from the Dutch Childhood Cancer Survivor Study (DCCSS-LATER) cohort were invited to take part in this cross-sectional study. We defined pre-frailty and frailty according to modified Fried criteria, and sarcopenia according to the European Working Group on Sarcopenia in Older People 2 definition. Associations between these conditions and demographic and treatment-related as well as endocrine and lifestyle-related factors were estimated with two separate multivariable logistic regression models in survivors with any frailty measurement or complete sarcopenia measurements. FINDINGS: 3996 adult survivors of the DCCSS-LATER cohort were invited to participate in this cross-sectional study. 1993 non-participants were excluded due to lack of response or a decline to participate and 2003 (50·1%) childhood cancer survivors aged 18-45 years were included. 1114 (55·6%) participants had complete frailty measurements and 1472 (73·5%) participants had complete sarcopenia measurements. Mean age at participation was 33·1 years (SD 7·2). 1037 (51·8%) participants were male, 966 (48·2%) were female, and none were transgender. In survivors with complete frailty measurements or complete sarcopenia measurements, the percentage of pre-frailty was 20·3% (95% CI 18·0-22·7), frailty was 7·4% (6·0-9·0), and sarcopenia was 4·4% (3·5-5·6). In the models for pre-frailty, underweight (odds ratio [OR] 3·38 [95% CI 1·92-5·95]) and obesity (OR 1·67 [1·14-2·43]), cranial irradiation (OR 2·07 [1·47-2·93]), total body irradiation (OR 3·17 [1·77-5·70]), cisplatin dose of at least 600 mg/m(2) (OR 3·75 [1·82-7·74]), growth hormone deficiency (OR 2·25 [1·23-4·09]), hyperthyroidism (OR 3·72 [1·63-8·47]), bone mineral density (Z score ≤-1 and >-2, OR 1·80 [95% CI 1·31-2·47]; Z score ≤-2, OR 3·37 [2·20-5·15]), and folic acid deficiency (OR 1·87 [1·31-2·68]) were considered significant. For frailty, associated factors included age at diagnosis between 10-18 years (OR 1·94 [95% CI 1·19-3·16]), underweight (OR 3·09 [1·42-6·69]), cranial irradiation (OR 2·65 [1·59-4·34]), total body irradiation (OR 3·28 [1·48-7·28]), cisplatin dose of at least 600 mg/m(2) (OR 3·93 [1·45-10·67]), higher carboplatin doses (per g/m(2); OR 1·15 [1·02-1·31]), cyclophosphamide equivalent dose of at least 20 g/m(2) (OR 3·90 [1·65-9·24]), hyperthyroidism (OR 2·87 [1·06-7·76]), bone mineral density Z score ≤-2 (OR 2·85 [1·54-5·29]), and folic acid deficiency (OR 2·04 [1·20-3·46]). Male sex (OR 4·56 [95%CI 2·26-9·17]), lower BMI (continuous, OR 0·52 [0·45-0·60]), cranial irradiation (OR 3·87 [1·80-8·31]), total body irradiation (OR 4·52 [1·67-12·20]), hypogonadism (OR 3·96 [1·40-11·18]), growth hormone deficiency (OR 4·66 [1·44-15·15]), and vitamin B12 deficiency (OR 6·26 [2·17-1·81]) were significantly associated with sarcopenia. INTERPRETATION: Our findings show that frailty and sarcopenia occur already at a mean age of 33 years in childhood cancer survivors. Early recognition and interventions for endocrine disorders and dietary deficiencies could be important in minimising the risk of pre-frailty, frailty, and sarcopenia in this population. FUNDING: Children Cancer-free Foundation, KiKaRoW, Dutch Cancer Society, ODAS Foundation. 01 april 2023

Published
2023
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11. Antiplatelet and Anticoagulant Drugs Do Not Affect Visual Outcome in Neovascular Age-Related Macular Degeneration in the BRAMD Trial

Author

Schlingemann, R.O., Verbraak, F.D., van Schooneveld, M., Wezel, M., Stam, H., Jansen-Kok, C., Althoff, A., Bakker, D., van der Zee, A., Stam, M., De Vries, D.J., Vingerling, J.R., Naus- Postema, N.C., De Roon Hertoge, K.L., Klaver, C.C.W., Kilic, E., Noordzij, Y., Noordzij, J., Vermij, A., Hooghart, A., Dijkman, G., Boesten, I., Kiewiet de Jonge, C., Kromhart- de Haas, M., Mollinger, C., Zwaan, J.W., Brink, L., Boolman, A., Hooymans, J.M.M., Kamminga, N., Huiskamp, A., Postma, G., Meinen, M., Uwantege, L., Luurtsema, H.R., Eisses, J.F., Ronardel de Lavalette, V.W., Van De Pol, J.P., Hoyng, C.B., de Vries, A., Huntink, E., Kalisingh, A., Hoeks, L., Hermans, H., Rotteveel, A., Weeda, J., Van Ast, C., van der Linden, M., Klaver, H., van Hierden, R., Coops, A., Corstanje, K., Jansen, M., van den Berg, N., Rulo, A., Gerbrandy, F., Tromp, A., Lopes Cardozol, O., Zola, E., Van Leeuwen, B., Dantuma, G., Koning, S., van Baekel, M., Selders, M., Zandee, M., Goudriaan, M., Langen, A., van de Mortel, R.W.H., Tetteroo, A., de Groot, Y., Dijkgraaf, M.G.W., De Haan, R., Zwinderman, A.H., Schauwvlieghe, A.M.E., Mehmedovic, S., van Dalen, J.J.W., Corten, I., Veenstra, E., Strubel, Y., Peto, T., Blows, P., Ringens, P.J., Geskus, R., van Leeuwen, R., Buitendijk, Gabriëlle H.S., Schauwvlieghe, Ann-Sofie M.E., Vingerling, Johannes R., Schlingemann, Reinier O., and Klaver, Caroline C.W.

Published
2018
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12. Psychosocial functioning of parents of Dutch long-term survivors of childhood cancer

Author

Gorp, M. van, Joosten, M.M.H., Maas, A., Drenth, B.L., Aa-van Delden, A. van der, Kremer, L.C.M., Dulmen-den Broeder, E. van, Tissing, W.J.E., Loonen, J.J., Pal, H.J.H. van der, Vries, A.C.H. de, Heuvel-Eibrink, M.M. van den, Ronckers, C., Bresters, D., Louwerens, M., Neggers, S.J.C.C.M., Heiden-van der Loo, M. van der, Maurice-Stam, H., Grootenhuis, M.A., Dutch LATER Study Grp, Pediatrics, Guided Treatment in Optimal Selected Cancer Patients (GUTS), Paediatric Oncology, Paediatric Pulmonology, CCA - Cancer Treatment and Quality of Life, ARD - Amsterdam Reproduction and Development, Child and Adolescent Psychiatry & Psychosocial Care, CCA - Cancer Treatment and quality of life, and Amsterdam Reproduction & Development (AR&D)

Subjects
parents, Experimental and Cognitive Psychology, survivors of childhood cancer, pediatric oncology, Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18], health-related quality of life, Psychiatry and Mental health, All institutes and research themes of the Radboud University Medical Center, Oncology, SDG 3 - Good Health and Well-being, psychosocial outcomes, illness cognitions, post-traumatic growth, psycho-oncology, post-traumatic stress
Abstract

Contains fulltext : 291391.pdf (Publisher’s version ) (Open Access) OBJECTIVE: To describe health-related quality of life (HRQoL), post-traumatic stress and post-traumatic growth of parents of long-term survivors of childhood cancer (CCS) 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 Adult's HRQoL (e.g., sleep and aggressive emotions), Self-Rating Scale for Post-traumatic Stress Disorder, Post-traumatic Growth Inventory, and Illness Cognition Questionnaire. HRQoL domain scores were compared to references using Mann-Whitney U tests. Correlations between post-traumatic stress, growth and HRQoL were evaluated. Medical characteristics of their child and illness cognitions were studied as associated factors of HRQOL, post-traumatic stress and growth. p

Published
2023
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14. Clinical evaluation of late outcomes in Dutch childhood cancer survivors: Methodology of the DCCSS LATER 2 study.

Author

Feijen, E.A.M., Teepen, J.C., Dulmen-den Broeder, E. van, Heuvel-Eibrink, M.M. van den, Heiden-van der Loo, M., Pal, H.J. van der, Vries, A.C.M. de, Louwerens, M., Bresters, D., Versluys, B., Ridder, H. de, Veening, M., Leeuwen, F.E. van, Grootenhuis, M., Maurice-Stam, H., Santen, H.M. van, Neggers, S.J., Pluijm, S., Hartogh, J. den, Ronckers, C.M., Tissing, W.J.E., Groot-Loonen, J.J., Kremer, L.C.M., Feijen, E.A.M., Teepen, J.C., Dulmen-den Broeder, E. van, Heuvel-Eibrink, M.M. van den, Heiden-van der Loo, M., Pal, H.J. van der, Vries, A.C.M. de, Louwerens, M., Bresters, D., Versluys, B., Ridder, H. de, Veening, M., Leeuwen, F.E. van, Grootenhuis, M., Maurice-Stam, H., Santen, H.M. van, Neggers, S.J., Pluijm, S., Hartogh, J. den, Ronckers, C.M., Tissing, W.J.E., Groot-Loonen, J.J., and Kremer, L.C.M.

Abstract

Item does not contain fulltext, 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 6165 five-year survivors diagnosed during 1963-2001, we invited 4735 eligible survivors in 2016, as well as siblings and parents of survivors. Gaps in evidence identified during development of surveillance guidelines were translated into clinical research questions for 16 outcome-specific subprojects. The regular care visit to the LATER outpatient clinic forms the backbone of outcome assessment complemented with research-defined measurements (physical examination, clinical tests, questionnaires). Furthermore, blood/saliva samples were taken for deoxyribonucleic acid (DNA) extraction. RESULTS: In total, 2519 (53.2%) survivors participated in the LATER 2 study. When comparing participants with nonparticipants, we observed that males, CNS survivors, and those treated with surgery only were less likely to participate. Of the participating survivors, 49.3% were female. Median time since childhood cancer diagnosis was 26.9 years (range 14.8-54.7 years) and median attained age was 34.4 years (range 15.4-66.6 years). CONCLUSIONS: The high-quality data generated in the LATER 2 study will provide valuable insights into risks of and risk factors for clinical and physical and psychosocial health outcomes and factors for early recognition of those health outcomes in long-term childhood cancer survivors. This will contribute to fill in important gaps in knowledge and improve the quality of life and care for childhood cancer survivors.

Published
2023

15. Frailty and sarcopenia within the earliest national Dutch childhood cancer survivor cohort (DCCSS-LATER): a cross-sectional study.

Author

Atteveld, Jenneke van, Winter, D.T.C. de, Pluimakers, V.G., Fiocco, M., Nievelstein, R.A., Hobbelink, M.G., Kremer, L.C.M., Grootenhuis, M.A., Maurice-Stam, H., Tissing, W.J.E., Vries, A.C.M. de, Loonen, J.J., Dulmen-den Broeder, E. van, Pal, H.J. van der, Pluijm, S.M.F., Heiden-van der Loo, M., Versluijs, A.B., Louwerens, M., Bresters, D., Santen, H.M. van, Hoefer, I., Berg, S.A. van den, Hartogh, J. den, Hoeijmakers, J.H.J., Neggers, S.J., Heuvel-Eibrink, M.M. van den, Atteveld, Jenneke van, Winter, D.T.C. de, Pluimakers, V.G., Fiocco, M., Nievelstein, R.A., Hobbelink, M.G., Kremer, L.C.M., Grootenhuis, M.A., Maurice-Stam, H., Tissing, W.J.E., Vries, A.C.M. de, Loonen, J.J., Dulmen-den Broeder, E. van, Pal, H.J. van der, Pluijm, S.M.F., Heiden-van der Loo, M., Versluijs, A.B., Louwerens, M., Bresters, D., Santen, H.M. van, Hoefer, I., Berg, S.A. van den, Hartogh, J. den, Hoeijmakers, J.H.J., Neggers, S.J., and Heuvel-Eibrink, M.M. van den

Abstract

01 april 2023, Item does not contain fulltext, 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 sarcopenia in a national cohort of Dutch childhood cancer survivors diagnosed between 1963 and 2001. METHODS: Eligible individuals (alive at the time of study, living in the Netherlands, age 18-45 years, and had not previously declined to participate in a late-effects study) from the Dutch Childhood Cancer Survivor Study (DCCSS-LATER) cohort were invited to take part in this cross-sectional study. We defined pre-frailty and frailty according to modified Fried criteria, and sarcopenia according to the European Working Group on Sarcopenia in Older People 2 definition. Associations between these conditions and demographic and treatment-related as well as endocrine and lifestyle-related factors were estimated with two separate multivariable logistic regression models in survivors with any frailty measurement or complete sarcopenia measurements. FINDINGS: 3996 adult survivors of the DCCSS-LATER cohort were invited to participate in this cross-sectional study. 1993 non-participants were excluded due to lack of response or a decline to participate and 2003 (50·1%) childhood cancer survivors aged 18-45 years were included. 1114 (55·6%) participants had complete frailty measurements and 1472 (73·5%) participants had complete sarcopenia measurements. Mean age at participation was 33·1 years (SD 7·2). 1037 (51·8%) participants were male, 966 (48·2%) were female, and none were transgender. In survivors with complete frailty measurements or complete sarcopenia measurements, the percentage of pre-frailty was 20·3% (95% CI 18·0-22·7), frailty was 7·4% (6·0-9·0), and sarcopenia was 4·4% (3·5-5·6). In the models for pre-frailty, underweigh

Published
2023

16. Psychosexual development, sexual functioning and sexual satisfaction in long-term childhood cancer survivors: DCCSS-LATER 2 sexuality substudy.

Author

Priboi, C., Gorp, M. van, Maurice-Stam, H., Michel, G., Kremer, L.C.M., Tissing, W.J.E., Loonen, J.J., Pal, H.J.H. van der, Vries, A.C.H. de, Heuvel-Eibrink, M.M. van den, Ronckers, C.M., Bresters, D., Louwerens, M., Neggers, S.J.C.C.M., Heiden-van der Loo, M. van der, Dulmen-den Broeder, E. van, Grootenhuis, M., Priboi, C., Gorp, M. van, Maurice-Stam, H., Michel, G., Kremer, L.C.M., Tissing, W.J.E., Loonen, J.J., Pal, H.J.H. van der, Vries, A.C.H. de, Heuvel-Eibrink, M.M. van den, Ronckers, C.M., Bresters, D., Louwerens, M., Neggers, S.J.C.C.M., Heiden-van der Loo, M. van der, Dulmen-den Broeder, E. van, and Grootenhuis, M.

Abstract

01 augustus 2023, Contains fulltext : 295951.pdf (Publisher’s version ) (Open Access), OBJECTIVES: Childhood cancer may negatively impact childhood cancer survivors' (CCS) sexuality. However, this is an understudied research area. We aimed to describe the psychosexual development, sexual functioning and sexual satisfaction of CCS, and identify determinants for these outcomes. Secondarily, we compared the outcomes of a subsample of emerging adult CCS to the Dutch general population. METHODS: From the Dutch Childhood Cancer Survivor Study LATER cohort (diagnosed 1963-2001), 1912 CCS (18-71 years, 50.8% male) completed questions on sexuality, psychosocial development, body perception, mental and physical health. Multivariable linear regressions were used to identify determinants. Sexuality of CCS age 18-24 (N = 243) was compared to same-aged references using binomial tests and t-tests. RESULTS: One third of all CCS reported hindered sexuality due to childhood cancer, with insecure body the most often reported reason (44.8%). Older age at study, lower education, surviving central nervous system cancer, poorer mental health and negative body perception were identified as determinants for later sexual debut, worse sexual functioning and/or sexual satisfaction. CCS age 18-24 showed significantly less experience with kissing (p = 0.014), petting under clothes (p = 0.002), oral (p = 0.016) and anal sex (p = 0.032) when compared to references. No significant differences with references were found for sexual functioning and sexual satisfaction, neither among female CCS nor male CCS age 18-24. CONCLUSIONS: Emerging adult CCS reported less experience with psychosexual development, but similar sexual functioning and sexual satisfaction compared to references. We identified determinants for sexuality, which could be integrated in clinical interventions for CCS at risk for reduced sexuality.

Published
2023

17. Psychosocial outcomes in long-term Dutch adult survivors of childhood cancer: The DCCSS-LATER 2 psycho-oncology study.

Author

Maas, A, Maurice-Stam, H., Kremer, L.C.M., Aa-van Delden, A. van der, Dulmen-den Broeder, E. van, Tissing, W.J.E., Loonen, J.J., Pal, H.J.H. van der, Vries, A.C.H. de, Heuvel-Eibrink, M.M. van den, Ronckers, C., Neggers, S., Bresters, D., Louwerens, M., Heiden-van der Loo, M. van der, Gorp, M. van, Grootenhuis, M., Maas, A, Maurice-Stam, H., Kremer, L.C.M., Aa-van Delden, A. van der, Dulmen-den Broeder, E. van, Tissing, W.J.E., Loonen, J.J., Pal, H.J.H. van der, Vries, A.C.H. de, Heuvel-Eibrink, M.M. van den, Ronckers, C., Neggers, S., Bresters, D., Louwerens, M., Heiden-van der Loo, M. van der, Gorp, M. van, and Grootenhuis, M.

Abstract

Contains fulltext : 295976.pdf (Publisher’s version ) (Open Access), BACKGROUND: This study compares a comprehensive range of psychosocial outcomes of adult childhood cancer survivors (CCS) to general population-based references and identifies sociodemographic and medical risk factors. METHODS: CCS from the Dutch Childhood Cancer Survivor Study (DCCSS)-LATER cohort (diagnosed 1963-2001) part 2 (attained age ≥18 years, diagnosed <18 years, ≥5 years since diagnosis) completed the Rosenberg Self-Esteem Scale, Hospital Anxiety and Depression Scale, Distress Thermometer, Self-Rating Scale for Post-Traumatic Stress Disorder, and the Short Form-36 (Health Related Quality of Life). CCS' scores were compared with references using analysis of variances and logistic regression analysis, controlling for age and sex (p < .05). Risk factors for worse psychosocial outcomes were assessed with regression analyses (p < .05). RESULTS: CCS, N = 1797, mean age 35.4 years, 49.0% female, all ≥15 years since diagnosis, participated. Three percent reported posttraumatic stress disorder because of childhood cancer and 36.6% experienced clinical distress. CCS did not differ from references on self-esteem and anxiety but were less depressed (d = -.25), and scored poorer on all health-related quality of life scales, except for bodily pain (.01 ≤ d ≥ -.36). Female sex, lower educational attainment, not being in a relationship, and being unemployed were negatively associated with almost all psychosocial outcomes. Except for a central nervous system tumor diagnosis, few medical characteristics were associated with psychosocial outcomes. CONCLUSION: CCS appear resilient regarding mental health but have slightly poorer health-related quality of life than references. Sociodemographic characteristics and central nervous system tumors were related to most psychosocial outcomes, but no clear pattern was observed for other medical factors. Future studies should address additional factors in explaining CCS' psychosocial functioning, such as coping, social support, and ph

Published
2023

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

Author

Maas, A., Maurice-Stam, H., Aa-van Delden, A.M. van der, Dalen, E.C. van, Dulmen-den Broeder, E. van, Tissing, W.J.E., Loonen, J.J., Pal, H.J.H. van der, Vries, A.C.H. de, Heuvel-Eibrink, M.M. van den, Janssens, G.O., Ronckers, C., Neggers, S., Bresters, D., Louwerens, M., Versluys, B.A.B., Heiden-van der Loo, M. van der, Kremer, L.C.M., Gorp, M. van, Grootenhuis, M.A., and Dutch LATER Study Group

Subjects
Quality of life, Impact of cancer, Long-term survivorship, Childhood cancer survivors, Psychosocial
Abstract

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 (diagnosed 1963-2001) part 2 (age >= 18 years, diagnosed < 18 years, >= 5 years since diagnosis) completed the Benefit & Burden Scale (BBSC) and the Impact of Cancer-Childhood Cancer (IOC-CS). Items were scored on a 5-point Likert scale (range 1-5). We examined outcomes with descriptive statistics, and socio-demographic and medical associated factors with regression analyses, corrected for multiple testing (p < 0.004). Results: CCS, N = 1713, age mean (M) 36 years, 49% female, >= 15 years since diagnosis, participated. On average, CCS reported 'somewhat' Benefit (M = 2.9), and 'not at all' to 'a little' Burden (M = 1.5) of childhood cancer. Average scores on IOC-CS' positive impact scales ranged from 2.5 (Personal Growth) to 4.1 (Socializing), and on the negative impact scales from 1.4 (Financial Problems) to 2.4 (Thinking/Memory). Apart from cognitive problems, CCS reported challenges as worries about relationship status, fertility, and how cancer had affected siblings. Female sex was associated with more Personal Growth, and more negative impact. CCS more highly educated, partnered, and employed had higher positive and lower negative impact. CCS older at diagnosis reported more positive impact. CNS tumor survivors and those who had head/cranium radiotherapy had higher negative impact. CNS tumor survivors reported less positive impact. Conclusion and implications: The majority of CCS reported positive impact of cancer while most CCS reported little negative impact. While this may indicate resiliency in most CCS, health care providers should be aware that they can also experience survivor-specific challenges that warrant monitoring/screening, information provision and psychosocial support.

Published
2023

19. Frailty and sarcopenia within the earliest national Dutch childhood cancer survivor cohort (DCCSS-LATER): a cross- sectional study

Author

Atteveld, J.E., Winter, D.T.C. de, Pluimakers, V.G., Fiocco, M., Nievelstein, R.A.J., Hobbelink, M.G.G., Kremer, L.C.M., Grootenhuis, M.A., Maurice-Stam, H., Tissing, W.J.E., Vries, A.C.H. de, Loonen, J.J., Broeder, E.V.D., Pal, H.H. van der, Pluijm, S.M.F., Loo, M.V.V., Versluijs, A.B., Louwerens, M., Bresters, D., Santen, H.M. van, Hoefer, I., denBerg, S.A.A. van, Hartogh, J. den, Hoeijmakers, J.H., Neggers, S.J.C.M.M., Heuvel-eibrink, M.M. van den, and Dutch LATER study grp

Abstract

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 sarcopenia in a national cohort of Dutch childhood cancer survivors diagnosed between 1963 and 2001.Methods Eligible individuals (alive at the time of study, living in the Netherlands, age 18-45 years, and had not previously declined to participate in a late-effects study) from the Dutch Childhood Cancer Survivor Study (DCCSS-LATER) cohort were invited to take part in this cross-sectional study. We defined pre-frailty and frailty according to modified Fried criteria, and sarcopenia according to the European Working Group on Sarcopenia in Older People 2 definition. Associations between these conditions and demographic and treatment-related as well as endocrine and lifestyle-related factors were estimated with two separate multivariable logistic regression models in survivors with any frailty measurement or complete sarcopenia measurements.Findings 3996 adult survivors of the DCCSS-LATER cohort were invited to participate in this cross-sectional study. 1993 non-participants were excluded due to lack of response or a decline to participate and 2003 (50.1%) childhood cancer survivors aged 18-45 years were included. 1114 (55.6%) participants had complete frailty measurements and 1472 (73.5%) participants had complete sarcopenia measurements. Mean age at participation was 33.1 years (SD 7.2). 1037 (51.8%) participants were male, 966 (48.2%) were female, and none were transgender. In survivors with complete frailty measurements or complete sarcopenia measurements, the percentage of pre-frailty was 20.3% (95% CI 18.0-22.7), frailty was 7.4% (6.0-9.0), and sarcopenia was 4.4% (3.5-5.6). In the models for pre-frailty, underweight (odds ratio [OR] 3.38 [95% CI 1.92-5.95]) and obesity (OR 1.67 [1.14-2.43]), cranial irradiation (OR 2.07 [1.47-2.93]), total body irradiation (OR 3.17 [1.77-5.70]), cisplatin dose of at least 600 mg/m2 (OR 3.75 [1.82-7.74]), growth hormone deficiency (OR 2.25 [1.23-4.09]), hyperthyroidism (OR 3.72 [1.63-8.47]), bone mineral density (Z score -2, OR 1.80 [95% CI 1.31-2.47]; Z score

Published
2023

21. Psychosocial developmental milestones of young adult survivors of childhood cancer

Author

Maurice-Stam, H., Erp, L.M.E. van, Maas, A, Oers, H.A. van, Kremer, L.C., Dulmen-den Broeder, E. van, Tissing, W.J.E., Loonen, J.J., Pal, H.J. van der, Beek, L.R., Vries, A.C.M. de, Heuvel-Eibrink, M.M. van den, Ronckers, C.M., Bresters, D., Louwerens, M., Heiden-van der Loo, M., Huizinga, G.A., and Grootenhuis, M.A.

Subjects
Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18]
Abstract

Contains fulltext : 251635.pdf (Publisher’s version ) (Open Access) 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 (diagnosed 1963-2001) part 2 completed the Course of Life Questionnaire (CoLQ), assessing the achievement of milestones. Items were grouped into the scales autonomy, psychosexual, and social development. Differences between YACCS and norm group were examined with ANOVA and Cohen's d (CoLQ scales) and with logistic regression analysis and odds ratio (OR) (CoLQ items), for the total group and YACCS of CNS cancer. RESULTS: The total group of YACCS did not report a less favorable psychosocial development than the norm group. YACCS of CNS cancer scored lower than the norm group (p < 0.001) on the scales autonomy (d = - 0.36) and psychosexual (d = - 0.46). Additionally, on half of the items of autonomy (0.25 ≤ OR ≤ 0.34), psychosexual (0.30 ≤ OR ≤ 0.48), and social (0.23 ≤ OR ≤ 0.47) development, YACCS of CNS cancer were less likely (p < 0.01) than the norm group to have achieved the milestones. CONCLUSION: Overall, psychosocial development of YACCS was as favorable as the norm, but YACCS of CNS cancer were at risk of an unfavorable psychosocial development in all domains. Monitoring psychosocial development should be included in the standards of psychosocial care, especially for CNS cancer patients and survivors, to be able to trace delay. Personalized interventions should be offered to improve the psychosocial development in an early stage.

Published
2022

23. Frailty and sarcopenia within the earliest Dutch childhood cancer survivor cohort (n=2,003)

Author

Atteveld, J.E. van, Winter, D.T.C. de, Pluimakers, V.G., Fiocco, M., Nievelstein, R.A.J., Hobbelink, M.G.G., Kremer, L.C.M., Ronckers, C.M., Grootenhuis, M.A., Maurice-Stam, H., Tissing, W.J.E., Vries Andrica, C.H. de, Loonen, J.J., Dulmen-den Broeder, E. van, Pal, H.J. van der, Pluijm, S., Heiden-van der Loo, M. van der, Versluys, B., Louwerens, M., Bresters, D., Santen, H.M. van, Hoefer, I., Berg, S.A.A., van den, Hoeijmakers, J.H.J., Neggers, S.J.C.M.M., and Heuvel-Eibrink, M.M. van den

Subjects
Immunology, Cell Biology, Hematology, Biochemistry
Published
2022
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25. ADVANCING ACADEMIC CAPACITY IN PHYSICAL AND REHABILITATION MEDICINE TO STRENGTHEN REHABILITATION IN HEALTH SYSTEMS WORLDWIDE: A JOINT EFFORT BY THE EUROPEAN ACADEMY OF REHABILITATION MEDICINE, THE ASSOCIATION OF ACADEMIC PHYSIATRISTS, AND THE INTERNATIONAL SOCIETY OF PHYSICAL AND REHABILITATION MEDICINE

Author

Frontera W. R., Stucki G., Engkasan J. P., Francisco G. E., Gutenbrunner C., Hasnan N., Lains J., Yusof Y. M., Negrini S., Omar Z., Battistella L. R., Sowa G., Stam H., Bickenbach J., Deltombe T., Didier J. -P., Malmivaara A., Mc-Namara A., Michail X., Paysant J., Rietman H., Vanderstraeten G., Ward A. B., Celnik P., Cuccurullo S. J., Fredericson M., Kowalske K., Lee M., Morgenroth D., Moroz A., Patel C., Powell D., Raghavan P., Stein A., Visco C., Wilson R., Gimigliano F., Laffont I., Li L., Schiappacasse C., Frontera, W. R., Stucki, G., Engkasan, J. P., Francisco, G. E., Gutenbrunner, C., Hasnan, N., Lains, J., Yusof, Y. M., Negrini, S., Omar, Z., Battistella, L. R., Sowa, G., Stam, H., Bickenbach, J., Deltombe, T., Didier, J. -P., Malmivaara, A., Mc-Namara, A., Michail, X., Paysant, J., Rietman, H., Vanderstraeten, G., Ward, A. B., Celnik, P., Cuccurullo, S. J., Fredericson, M., Kowalske, K., Lee, M., Morgenroth, D., Moroz, A., Patel, C., Powell, D., Raghavan, P., Stein, A., Visco, C., Wilson, R., Gimigliano, F., Laffont, I., Li, L., Schiappacasse, C., and Rehabilitation Medicine

Subjects
Science & Technology, Rehabilitation, Physical Therapy, Sports Therapy and Rehabilitation, General Medicine, Physical and Rehabilitation Medicine, Physiatrists, Academic Capacity, Settore MED/34 - Medicina Fisica e Riabilitativa, Medicine, Humans, Life Sciences & Biomedicine, Physical Examination, Sport Sciences
Abstract

ispartof: AMERICAN JOURNAL OF PHYSICAL MEDICINE & REHABILITATION vol:101 issue:9 pages:897-904 ispartof: location:United States status: published

Published
2022

26. Pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy

Author

van Gorp, M., Dallmeijer, Annet J., van Wely, Leontien, de Groot, Vincent, Terwee, Caroline B., Flens, Gerard, Stam, Henk J., van der Slot, W., Roebroeck, Marij E., Tan, S. S., van Meeteren, J., Stam, H., Dallmeijer, A. J., van Wely, L., de Groot, V, Ketelaar, M., Voorman, J. M., Reinders-Messelink, H. A., Gorter, J. W., Verheijden, J., Rehabilitation Medicine, Clinical Child and Family Studies, Pulmonary Medicine, Erasmus School of Economics, Obstetrics & Gynecology, Paediatric Psychosocial Care, APH - Mental Health, CCA - Treatment and quality of life, Amsterdam Reproduction & Development, Amsterdam Movement Sciences - Restoration and Development, Rehabilitation medicine, Amsterdam Reproduction & Development (AR&D), Amsterdam Movement Sciences, Amsterdam Movement Sciences - Rehabilitation & Development, Epidemiology and Data Science, APH - Aging & Later Life, APH - Methodology, APH - Societal Participation & Health, and APH - Health Behaviors & Chronic Diseases

Subjects
030506 rehabilitation, medicine.medical_specialty, medicine.medical_treatment, Population, GROSS, PARTICIPATION, CHILDREN, Cerebral palsy, 03 medical and health sciences, MOTOR FUNCTION, 0302 clinical medicine, depressive symptoms, Quality of life, SDG 3 - Good Health and Well-being, QUALITY-OF-LIFE, medicine, Humans, pain, Young adult, education, MUSCULOSKELETAL PAIN, education.field_of_study, Sleep disorder, Rehabilitation, Depression, business.industry, Gross Motor Function Classification System, medicine.disease, sleep disturbance, Mental health, INDIVIDUALS, Physical therapy, young adult, CLASSIFICATION-SYSTEM, fatigue, Sleep, 0305 other medical science, business, MENTAL-HEALTH, ITEM BANKS, 030217 neurology & neurosurgery
Abstract

Purpose: Investigate pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy compared to references. Materials and methods: Young adults with cerebral palsy (n = 97, aged 21–34 years) and age-matched references from the general population (n = 190) rated pain using a numeric rating scale and fatigue, depressive symptoms, sleep disturbance and global health using Patient-Reported Outcomes Measurement Information System® short forms. Scores were compared between cerebral palsy subgroups and the reference population. Correlation coefficients and linear regression analyses assessed interrelationships of health issues and associations with global health. Results: Individuals with Gross Motor Function Classification System level I had less pain, fatigue and depressive symptoms, while individuals with levels II and III–V had more pain (53% and 56%, p < 0.001) and those with levels III–V more fatigue (39%, p = 0.035) than references (pain: 26%, fatigue: 14%). Pain and fatigue were more interrelated (correlation coefficients: 0.71 vs. 0.41) and stronger associated with global mental health in individuals with cerebral palsy. Conclusions: Young adults with Gross Motor Function Classification System levels II–V report more pain and those with levels III–V report more fatigue than references. Pain and fatigue are highly interrelated and specifically relate to mental health in individuals with cerebral palsy.Implications for rehabilitation Except for those in the highest level of motor function, young adults with cerebral palsy report higher levels of pain and fatigue compared to the general population of the same age. Pain and fatigue are strongly interrelated and associated with mental health in young adults with cerebral palsy. The present study recommends to monitor pain and fatigue in young adults with cerebral palsy with low levels of gross motor function. We advise rehabilitation professionals to consider combined treatment for both pain and fatigue.

Published
2021
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28. The role of appraisal and coping style in relation with societal participation in fatigued patients with multiple sclerosis: a cross-sectional multiple mediator analysis

Author

van den Akker, Lizanne Eva, Beckerman, Heleen, Collette, Emma Hubertine, Bleijenberg, Gijs, Dekker, Joost, Knoop, Hans, de Groot, Vincent, de Groot, V., Beckerman, H., Malekzadeh, A., van den Akker, L. E., Looijmans, M., Sanches, S. A., Dekker, J., Collette, E. H., van Oosten, B. W., Teunissen, C. E., Blankenstein, M. A., Eijssen, I. C. J. M., Rietberg, M., Heine, M., Verschuren, O., Kwakkel, G., Visser-Meily, J. M. A., van de Port, I. G. L., Lindeman, E., Blikman, L. J. M., van Meeteren, J., Bussmann, J. B. J., Stam, H. J., Hintzen, R. Q., Hacking, H. G. A., Hoogervorst, E. L., Frequin, S. T. F. M., Knoop, H., de Jong, B. A., de Laat, F. A. J., Verhulsdonck, M. C., van Munster, E. T. H., Oosterwijk, C. J., Aarts, G. J., and TREFAMS-ACE study group

Published
2016
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31. Support needs of Dutch young adult childhood cancer survivors

Author

Erp, L., Maurice-Stam, H., Kremer, L., Tissing, W., Pal, H., Beek, L., Vries, A., Den Heuvel-Eibrink, M., Versluys, B., Heiden-Van Loo, M., Marloes van Gorp, Huizinga, G., Grootenhuis, M., Paediatric Oncology, CCA - Cancer Treatment and Quality of Life, ARD - Amsterdam Reproduction and Development, Child and Adolescent Psychiatry & Psychosocial Care, Pediatrics, and Guided Treatment in Optimal Selected Cancer Patients (GUTS)

Subjects
Adult, Health Services Needs and Demand, Adolescent, Psychosocial support, Survivorship care, Social Support, Survivorship, Young Adult, Cancer Survivors, Oncology, SDG 3 - Good Health and Well-being, Neoplasms, Surveys and Questionnaires, Quality of Life, Humans, Original Article, Child, Childhood cancer, Needs, Young adults
Abstract

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) cross-sectionally filled out a questionnaire regarding their need for various types of support (concrete information, personal counseling, and peer contact) in eight domains (physical consequences of childhood cancer, social-emotional consequences, relationships and sexuality, fertility, lifestyle, school and work, future perspective, insurance and mortgage), and questionnaires assessing health-related quality of life (PedsQL-YA), anxiety and depression (HADS), and fatigue (CIS-20R). Descriptive statistics were used to describe support needs. Linear regression was used to identify characteristics associated with support needs. Results One hundred fifty-one YACCS participated (response = 40%). Most YACCS reported a need for support in one or more domains (88.0%, N = 133). More than half of the participants reported a need for concrete information in the domains lifestyle, fertility, and physical consequences of childhood cancer and 25–50% in the domains insurance and mortgages, future perspective, and social-emotional consequences of childhood cancer. In the domains lifestyle and physical as well as emotional consequences of childhood cancer, 25–50% reported a need for counseling. Overall need for support was positively associated with middle (β = 0.26, p = 0.024) and high (β = 0.35, p = 0.014) compared to low educational attainment and (sub)clinical anxiety (β = 0.22, p = 0.017), and negatively associated with social functioning (β = − 0.37, p = 0.002) in multivariate analyses. Conclusion YACCS report the strongest need for support, for concrete information, in the domains lifestyle, fertility, and physical consequences of childhood cancer. Associated factors were mostly socioeconomic and psychosocial in nature. Psychosocial care should be an integral part of survivorship care for YACCS, with screening for psychosocial problems, information provision including associated emotional consequences and support if necessary (psycho-education) and tailored interventions, and adequate referrals to more specialized care if necessary.

Published
2022

32. Increased health-related quality of life impairments of male and female survivors of childhood cancer: DCCSS LATER 2 psycho-oncology study

Author

Gorp, M. van, Erp, L.M.E. van, Maas, A, Kremer, L.C., Dulmen-den Broeder, E. van, Tissing, W.J., Loonen, J.J., Pal, H.J. van der, Vries, A.C.M. de, Heuvel-Eibrink, M.M. van den, Ronckers, C.M., Bresters, D., Louwerens, M., Heiden-van der Loo, M., Huizinga, G.A., Maurice-Stam, H., Grootenhuis, M.A., Gorp, M. van, Erp, L.M.E. van, Maas, A, Kremer, L.C., Dulmen-den Broeder, E. van, Tissing, W.J., Loonen, J.J., Pal, H.J. van der, Vries, A.C.M. de, Heuvel-Eibrink, M.M. van den, Ronckers, C.M., Bresters, D., Louwerens, M., Heiden-van der Loo, M., Huizinga, G.A., Maurice-Stam, H., and Grootenhuis, M.A.

Abstract

Item does not contain fulltext, 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 older (time since diagnosis ≥ 5 years), were invited to complete the TNO-AZL Questionnaire for Adult Health-Related Quality of Life. Domain scores and proportions of CCSs with impaired HRQOL (score < 25th percentile of the reference scores) were compared with references via Mann-Whitney U tests and logistic regression analyses corrected for age and sex (P < .004). Interactions of group with sex were included if they were significant (P < .05). Moreover, medical determinants were analyzed with multivariable logistic regression analyses. RESULTS: HRQOL scores for 1766 CCSs (mean age, 35.9 years [standard deviation, 9.4 years]; male, 51%; response rate, 71%) differed from references on most domains with small effect sizes. Both male and female CCSs were more often impaired in gross and fine motor functioning, cognitive functioning, sleep, and vitality with odds ratios (ORs) > 1.4. In addition, female CCSs were more often impaired in daily activities, pain, and sexuality (ORs, 1.4-1.9) and were less often aggressive (OR, 0.6). CCCs of central nervous system (CNS) tumors, bone tumors, and retinoblastoma and those with cranial, abdominopelvic, or lower extremity radiotherapy were at increased risk of impairment in 1 or more domains. CONCLUSIONS: Dutch adult CCSs, especially females, have impaired HRQOL in several domains; this is most pronounced in cognitive functioning. The vulnerabilities of subgroups at risk, such as CCSs of CNS tumors, were confirmed. Surveillance of HRQOL and multidisciplinary survivor care are recommended. LAY SUMMARY: The health-related quality of life in a Dutch nationwide cohort of 1766 survivors of chi

Published
2022

34. The Impact of Cancer-Related Fatigue on HRQOL in Survivors of Childhood Cancer: A DCCSS LATER Study

Author

Penson, A., Walraven, I., Bronkhorst, E.M., Maurice-Stam, H., Grootenhuis, M.A., Heiden-van der Loo, M., Tissing, W.J.E., Pal, H.J. van der, Vries, A.C.M. de, Bresters, D., Ronckers, C., Heuvel, Marry M., Neggers, S., Versluys, B.A., Louwerens, M., Pluijm, S.M.F., Kremer, L.C., Blijlevens, N.M., Dulmen-den Broeder, E. van, Knoop, H., Loonen, J.J., Penson, A., Walraven, I., Bronkhorst, E.M., Maurice-Stam, H., Grootenhuis, M.A., Heiden-van der Loo, M., Tissing, W.J.E., Pal, H.J. van der, Vries, A.C.M. de, Bresters, D., Ronckers, C., Heuvel, Marry M., Neggers, S., Versluys, B.A., Louwerens, M., Pluijm, S.M.F., Kremer, L.C., Blijlevens, N.M., Dulmen-den Broeder, E. van, Knoop, H., and Loonen, J.J.

Abstract

Contains fulltext : 251637.pdf (Publisher’s version ) (Open Access), 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 cohort of CCS. METHODS: Participants were included from the Dutch Childhood Cancer Survivor Study (DCCSS) LATER cohort, a nationwide cohort of CCS. Participants completed the Checklist Individual Strength (CIS) to indicate CF (CIS fatigue severity subscale ≥ 35 and duration of symptoms ≥6 months) and the Short Form-36 (SF-36) and TNO (Netherlands Organization for Applied Scientific Research) and AZL (Leiden University Medical Centre) Adult's Health-Related Quality of Life questionnaire (TAAQOL) as measures for HRQOL. Differences in mean HRQOL domain scores between CF and non-CF participants were investigated using independent samples t-tests and ANCOVA to adjust for age and sex. The association between CF and impaired HRQOL (scoring ≥ 2 SD below the population norm) was investigated using logistic regression analyses, adjusting for confounders. RESULTS: A total of 1695 participants were included in the study. Mean HRQOL domain scores were significantly lower in participants with CF. In addition, CF was associated with impaired HRQOL on all of the domains (except physical functioning) with adjusted odds ratios ranging from 2.1 (95% CI 1.3-3.4; sexuality domain) to 30.4 (95% CI 16.4-56.2; vitality domain). CONCLUSIONS: CF is associated with impaired HRQOL, urging for the screening and regular monitoring of fatigue, and developing possible preventative programs and interventions.

Published
2022

35. Pros and Cons of Randomized Controlled Trials and Benchmarking Controlled Trials in Rehabilitation:An Academic Debate within the European Academy of Rehabilitation Medicine

Author

Malmivaara, A., Zampolini, M., Stam, H., Gutenbrunner, C., Malmivaara, A., Zampolini, M., Stam, H., and Gutenbrunner, C.

Abstract

The European Academy of Rehabilitation Medicine (EARM) held a debate in Hannover, Germany, on 1st of September 2016 on the pros and cons of randomized controlled trials (RCTs) and observational effectiveness studies (benchmarking controlled trials; BCTs). The debate involved a chairperson, a person presenting the substance of the debate, an opponent, and a rapporteur. The academicians participated in the discussion. Eight propositions and proposed statements formed the substance of the debate. There was agreement that a study question should be the starting point of an effectiveness study, and not the study method, i.e. RCT or BCT. The term "benchmarking" was questioned: does it mean market-oriented medicine? It was clarified that benchmarking refers to the methodological features of this study design: there must always be a comparison between peers. It was agreed that BCTs might be better than RCTs for use in rehabilitation studies, in which one often needs multi-centred studies, such as in the assessment of the effectiveness of pathways when there is complexity of processes, health systems, organizational issues, structures and facilities; or where interactions between therapists, doctors and patients differ between centres; and when assessing the implementation of rehabilitation. In addition, BCTs may deal with ethical issues, e.g. the acceptability of interventions, more easily than RCTs. Recommendations regarding the different approaches (RCTs or BCTs) should be provided by the scientific rehabilitation societies. Concern over the validity of BCTs was considered justified, as the validity criteria of BCTs cover all those related to RCTs and include the risk of selection bias between treatment arms. Appropriate description of the essentials of the study object, including adequate description of how the interventions were actualized in comparison to the study plan, are essential features for a valid and generalizable study for both RCTs and BCTs. BCTs are ne

Published
2022

36. Support needs of Dutch young adult childhood cancer survivors

Author

PMC Medisch specialisten, Speerpunt, Zorg en O&O, Child Health, SCT patientenzorg, van Erp, L M E, Maurice-Stam, H, Kremer, L C M, Tissing, W J E, van der Pal, H J H, Beek, L, de Vries, A C H, van den Heuvel-Eibrink, M M, Versluys, B A B, van der Heiden-van der Loo, M, van Gorp, M, Huizinga, G A, Grootenhuis, M A, PMC Medisch specialisten, Speerpunt, Zorg en O&O, Child Health, SCT patientenzorg, van Erp, L M E, Maurice-Stam, H, Kremer, L C M, Tissing, W J E, van der Pal, H J H, Beek, L, de Vries, A C H, van den Heuvel-Eibrink, M M, Versluys, B A B, van der Heiden-van der Loo, M, van Gorp, M, Huizinga, G A, and Grootenhuis, M A

Published
2022

40. Anxiety and depression in mothers and fathers of a chronically ill child

Author

van Oers, H.A., Haverman, L., Limperg, P.F., van Dijk-Lokkart, E.M., Maurice-Stam, H., and Grootenhuis, M.A.

Subjects
Depression, Mental -- Care and treatment, Chronically ill children -- Care and treatment, Anxiety -- Diagnosis -- Care and treatment, Quality of life -- Analysis, Health care industry
Abstract

We aimed to determine the levels of anxiety and depression in mothers and fathers of a chronically ill child (0-18 years) and to study which parental and child variables are associated with anxiety and depression. In a cross-sectional design, anxiety and depression were assessed with the Hospital Anxiety and Depression Scale. Scores were compared to a Dutch reference group by analysis of variance and logistic regression analysis. Linear regression analyses were performed to examine which variables were associated with anxiety and depression. Mothers of a chronically ill child (n = 566) scored significantly higher than the reference group (p < .001) on anxiety (Mean 5.9 vs 4.8) and depression (Mean 4.5 vs 3.1). Fathers (n = 123) had higher depression scores (Mean 4.5 vs 3.6; p < .05), but fathers' anxiety scores were comparable to the reference group. The percentages of mothers in the clinical range of anxiety (31.8 vs 20.7 %, OR 2.03, 95 % CI 1.46-2.83) and depression (23.0 vs 12.0 %, OR 2.76, 95 % CI 1.84-4.13) were higher (p < .001) than in the reference group. No differences were found for fathers in the clinical range for anxiety and depression. Practical problems in daily life (a: [beta] = .33, d: [beta] = .25) and parenting stress (a: [beta] = .30, d: [beta] = .32) showed the strongest association with anxiety and depression for parents as a group. Illness-related characteristics of the child were not related. Parents of a chronically ill child, especially mothers, reported high levels of anxiety and depression. Awareness about parental anxiety and depression in pediatrics is important as well as targeted interventions. Keywords Anxiety * Chronically ill children * Depression * Parents * Pediatrics, Introduction The number of parents caring for a chronically ill child is increasing [1]. This increase is achieved by the improvements in medical care, which have led to higher survival [...]

Published
2014
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45. Duizeligheid

Author

Maarsingh, OR, Stam, H., van Vugt, V. A., de Jongh, T.O.H., de Vries, H., Knottnerus, B.J., Keurlings, P.A.J., Damen, J., Reinders, M.E., General practice, APH - Aging & Later Life, APH - Mental Health, APH - Digital Health, APH - Quality of Care, and APH - Global Health

Published
2021

46. Health-related quality of life in Dutch adult survivors of childhood cancer: A nation-wide cohort study

Author

Erp, L. van, Maurice-Stam, H., Kremer, Leontine C. M., Tissing, W.J., Pal, Helena J.H. van der, Vries, A.C. de, Loonen, J.J., Dulmen-den Broeder, E. van, Grootenhuis, M.A., Erp, L. van, Maurice-Stam, H., Kremer, Leontine C. M., Tissing, W.J., Pal, Helena J.H. van der, Vries, A.C. de, Loonen, J.J., Dulmen-den Broeder, E. van, and Grootenhuis, M.A.

Abstract

Contains fulltext : 236840.pdf (Publisher’s version ) (Open Access)

Published
2021

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