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1. 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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2. 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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5. 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

7. 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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13. Barriers, facilitators, and other factors associated with health behaviors in childhood, adolescent, and young adult cancer survivors: A systematic review.

Author

de Beijer, Ismay A. E., Bouwman, Eline, Mulder, Renée L., Steensma, Philippa, Brown, Morven C., Araújo‐Soares, Vera, Balcerek, Magdalena, Bardi, Edit, Falck Winther, Jeanette, Frederiksen, Line Elmerdahl, van Gorp, Marloes, Oberti, Sara, van Kalsbeek, Rebecca J., Kepak, Tomas, Kepakova, Katerina, Gsell, Hannah, Kienesberger, Anita, van Litsenburg, Raphaële, Mader, Luzius, and Michel, Gisela

Subjects
HEALTH behavior, YOUNG adults, CANCER survivors, CANCER patients, AT-risk behavior
Abstract

Background: Healthy behaviors are paramount in preventing long‐term adverse health outcomes in childhood, adolescent, and young adult (CAYA) cancer survivors. We systematically reviewed and synthesized existing literature on barriers, facilitators, and other factors associated with health behaviors in this population. Methods: MEDLINE and PsycInfo were searched for qualitative and quantitative studies including survivors aged 16–50 years at study, a cancer diagnosis ≤25 years and ≥2 years post diagnosis. Health behaviors included physical activity, smoking, diet, alcohol consumption, sun exposure, and a combination of these behaviors (defined as health behaviors in general). Results: Barriers, facilitators, and other factors reported in ≥2 two studies were considered relevant. Out of 4529 studies, 27 were included (n = 31,905 participants). Physical activity was the most frequently examined behavior (n = 12 studies), followed by smoking (n = 7), diet (n = 7), alcohol (n = 4), sun exposure (n = 4), and health behavior in general (n = 4). Relevant barriers to physical activity were fatigue, lack of motivation, time constraints, and current smoking. Relevant facilitators were perceived health benefits and motivation. Influence of the social environment and poor mental health were associated with more smoking, while increased energy was associated with less smoking. No relevant barriers and facilitators were identified for diet, alcohol consumption, and sun exposure. Barriers to healthy behavior in general were unmet information needs and time constraints whereas lifestyle advice, information, and discussions with a healthcare professional facilitated healthy behavior in general. Concerning other factors, women were more likely to be physically inactive, but less likely to drink alcohol and more likely to comply with sun protection recommendations than men. Higher education was associated with more physical activity, and lower education with more smoking. Conclusion: This knowledge can be used as a starting point to develop health behavior interventions, inform lifestyle coaches, and increase awareness among healthcare providers regarding which survivors are most at risk of unhealthy behaviors. [ABSTRACT FROM AUTHOR]

Published
2024
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17. Psychosexual development, sexual functioning and sexual satisfaction in long‐term childhood cancer survivors: DCCSS‐LATER 2 sexuality substudy

Author

Priboi, Cristina, primary, van Gorp, Marloes, additional, Maurice‐Stam, Heleen, additional, Michel, Gisela, additional, Kremer, Leontien C. M., additional, Tissing, Wim J. E., additional, Loonen, Jacqueline J., additional, van der Pal, Helena J. H., additional, de Vries, Andrica C. H., additional, van den Heuvel‐Eibrink, Marry M., additional, Ronckers, Cécile M., additional, Bresters, Dorine, additional, Louwerens, Marloes, additional, Neggers, Sebastian J. C. C. M., additional, van der Heiden‐van der Loo, Margriet, additional, van Dulmen‐den Broeder, Eline, additional, and Grootenhuis, Martha, additional

Published
2023
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18. Psychosexual development, sexual functioning and sexual satisfaction in long‐term childhood cancer survivors: DCCSS‐LATER 2 sexuality substudy

Author

Priboi, Cristina, van Gorp, Marloes, Maurice‐Stam, Heleen, Michel, Gisela, C. M. Kremer, Leontien, 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 M., Bresters, Dorine, Louwerens, Marloes, Neggers, Sebastian J. C. C. M., van der Heiden‐van der Loo, Margriet, van Dulmen‐den Broeder, Eline, Grootenhuis, Martha, Priboi, Cristina, van Gorp, Marloes, Maurice‐Stam, Heleen, Michel, Gisela, C. M. Kremer, Leontien, 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 M., Bresters, Dorine, Louwerens, Marloes, Neggers, Sebastian J. C. C. M., van der Heiden‐van der Loo, Margriet, van Dulmen‐den Broeder, Eline, and Grootenhuis, Martha

Abstract

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.

Published
2023

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

Author

Priboi, Cristina, van Gorp, Marloes, Maurice-Stam, Heleen, Michel, Gisela, Kremer, Leontien C.M., 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 M., Bresters, Dorine, Louwerens, Marloes, Neggers, Sebastian J.C.C.M., van der Heiden-van der Loo, Margriet, van Dulmen-den Broeder, Eline, Grootenhuis, Martha, Priboi, Cristina, van Gorp, Marloes, Maurice-Stam, Heleen, Michel, Gisela, Kremer, Leontien C.M., 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 M., Bresters, Dorine, Louwerens, Marloes, Neggers, Sebastian J.C.C.M., van der Heiden-van der Loo, Margriet, van Dulmen-den Broeder, Eline, and Grootenhuis, Martha

Abstract

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

20. 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, Grootenhuis, Martha A., 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.

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 warra

Published
2023

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

Author

Maas, Anne, Maurice-Stam, Heleen, Kremer, Leontien C.M., van der Aa-van Delden, Alied, 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, van der Heiden-van der Loo, Margriet, van Gorp, Marloes, Grootenhuis, Martha, Maas, Anne, Maurice-Stam, Heleen, Kremer, Leontien C.M., van der Aa-van Delden, Alied, 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, van der Heiden-van der Loo, Margriet, van Gorp, Marloes, and Grootenhuis, Martha

Abstract

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

Published
2023

22. Longitudinal development of fatigue after treatment for childhood cancer: a national cohort study

Author

Sociale Pediatrie patientenzorg, Child Health, ZL Kinder Ner en Nec Medisch, Speerpunt, Zorg en O&O, Cancer, Irestorm, Elin, van Gorp, Marloes, Twisk, Jos, Nijhof, Sanne, de Bont, Judith, Grootenhuis, Martha, van Litsenburg, Raphaele, Sociale Pediatrie patientenzorg, Child Health, ZL Kinder Ner en Nec Medisch, Speerpunt, Zorg en O&O, Cancer, Irestorm, Elin, van Gorp, Marloes, Twisk, Jos, Nijhof, Sanne, de Bont, Judith, Grootenhuis, Martha, and van Litsenburg, Raphaele

Published
2023

23. Fatigue mediates the relationship between emotional and cognitive functioning in children post-cancer treatment

Author

Sociale pediatrie onderzoek 1, Sociale Pediatrie patientenzorg, Child Health, Speerpunt, Zorg en O&O, Cancer, Greidanus-Jongejan, Juliette E M, van Gorp, Marloes, van Litsenburg, Raphaele R L, Aarsen, Femke K, van der Vlist, Merel M Nap, Nijhof, Sanne, Grootenhuis, Martha A, Sociale pediatrie onderzoek 1, Sociale Pediatrie patientenzorg, Child Health, Speerpunt, Zorg en O&O, Cancer, Greidanus-Jongejan, Juliette E M, van Gorp, Marloes, van Litsenburg, Raphaele R L, Aarsen, Femke K, van der Vlist, Merel M Nap, Nijhof, Sanne, and Grootenhuis, Martha A

Published
2023

24. 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, Grootenhuis, Martha A., and Pediatrics

Subjects
SDG 3 - Good Health and Well-being
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

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

Author

Maas, Anne, Maurice-Stam, Heleen, Kremer, Leontien C.M., van der Aa-van Delden, Alied, 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, van der Heiden-van der Loo, Margriet, van Gorp, Marloes, Grootenhuis, Martha, and Pediatrics

Subjects
SDG 3 - Good Health and Well-being
Abstract

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

Published
2023

28. Psychosocial functioning of adult siblings of Dutch very long‐term survivors of childhood cancer: DCCSS‐LATER 2 psycho‐oncology study.

Author

Joosten, Mala M. H., van Gorp, Marloes, van Dijk, Jennifer, Kremer, Leontien C. M., 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, Bresters, Dorine, Louwerens, Marloes, Neggers, Sebastian J. C. C. M., van der Heiden‐van der Loo, Margriet, Maurice‐Stam, Heleen, Grootenhuis, Martha A., Versluys, Birgitta, van Leeuwen, Flora, and van der Steeg, Lideke

Subjects
*PSYCHO-oncology, *PSYCHOSOCIAL functioning, *CHILDHOOD cancer, *DUTCH people, *POST-traumatic stress, *CANCER survivors
Abstract

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) of the Dutch Childhood Cancer Survivor Study DCCSS‐LATER cohort were invited to complete questionnaires on HRQoL (TNO‐AZL Questionnaire for Adult's HRQoL), anxiety/depression (Hospital Anxiety and Depression Scale), post‐traumatic stress (Self‐Rating Scale for Post‐traumatic Stress Disorder), self‐esteem (Rosenberg Self‐Esteem Scale) and benefit and burden (Benefit and Burden Scale for Children). Outcomes were compared to a reference group if available, using Mann‐Whitney U and chi‐Square tests. Associations of siblings' sociodemographic and CCS' cancer‐related characteristics with the outcomes were assessed with mixed model analysis. Results: Five hundred five siblings (response rate 34%, 64% female, mean age 37.5, mean time since diagnosis 29.5) of 412 CCS participated. Siblings had comparable HRQoL, anxiety and self‐esteem to references with no or small differences (r = 0.08−0.15, p < 0.05) and less depression. Proportions of symptomatic PTSD were very small (0.4%−0.6%). Effect sizes of associations of siblings' sociodemographic and CCS cancer‐related characteristics were mostly small to medium (β = 0.19−0.67, p < 0.05) and no clear trend was found in the studied associated factors for worse outcomes. Conclusions: On the very long‐term, siblings do not have impaired psychosocial functioning compared to references. Cancer‐related factors seem not to impact siblings' psychosocial functioning. Early support and education remain essential to prevent long‐term consequences. [ABSTRACT FROM AUTHOR]

Published
2023
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29. Online cognitive-behavioral group intervention for young adult survivors of childhood cancer: a pilot study.

Author

van Erp, Loes M. E., Maurice-Stam, Heleen, Beek, Laura R., Kremer, Leontien C. M., den Hartogh, Jaap G., van Gorp, Marloes, Huizinga, Gea A., and Grootenhuis, Martha A.

Subjects
CANCER patient psychology, PILOT projects, WELL-being, AFFINITY groups, TEACHING methods, INTERNET, MEDICAL care, COGNITION, PATIENT satisfaction, BEHAVIOR therapy, PSYCHOEDUCATION, SATISFACTION, HEALTH outcome assessment, CHILD behavior, TUMORS in children, TREATMENT effectiveness, PRE-tests & post-tests, T-test (Statistics), SELF-efficacy, ACCEPTANCE & commitment therapy, RESEARCH funding, QUESTIONNAIRES, PSYCHOLOGICAL adaptation, GROUP psychotherapy, PSYCHOLOGICAL distress, ADULTS
Abstract

Young adult childhood cancer survivors (YACCS) are a vulnerable group in need of psychosocial support, but tailored interventions are lacking. 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 providing peer-contact, thereby reducing and preventing psychosocial problems in YACCS. The intervention is based on psycho-education, cognitive behavioral therapy, and aspects of acceptance and commitment therapy. YACCS completed questionnaires pre- and post-intervention. Feasibility was based on attendance, drop-out, and an evaluation questionnaire was administered to assess satisfaction. Preliminary effectiveness was evaluated with the Mastery Scale, Illness Cognition Questionnaire, Distress Thermometer, Impact of Cancer - Childhood Survivors, and Pediatric Quality of Life Inventory. Preliminary effectiveness was investigated by testing differences on the psychosocial outcomes (coping and psychosocial wellbeing) between T0 and T1 within respondents, using paired samples t tests and Cohen's d. 10 YACCS participated in the intervention and completed all questionnaires. There was no drop-out; 90% of participants attended five out of six sessions. Overall, participants were satisfied with the intervention; 7.6 on a 0-10 scale. Distress (Cohen's d=-.6, p=.030) and feelings of helplessness (Cohen's d=-.8, p=.001) reduced from T0 to T1, while self-efficacy (Cohen's d=.8, p=.013,) improved. Other outcomes displayed small effects, but did not change significantly. This first, small pilot study showed short-term decrease in distress and feelings of helplessness and improvement of self-efficacy. Op Koers Online was positively evaluated by YACCS and course leaders, filling a gap in psychosocial services for YACCS. [ABSTRACT FROM AUTHOR]

Published
2023
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30. Interactive Education on Sleep Hygiene with a Social Robot at a Pediatric Oncology Outpatient Clinic: Feasibility, Experiences, and Preliminary Effectiveness

Author

van Bindsbergen, Kelly L. A., primary, van der Hoek, Hinke, additional, van Gorp, Marloes, additional, Ligthart, Mike E. U., additional, Hindriks, Koen V., additional, Neerincx, Mark A., additional, Alderliesten, Tanja, additional, Bosman, Peter A. N., additional, Merks, Johannes H. M., additional, Grootenhuis, Martha A., additional, and van Litsenburg, Raphaële R. L., additional

Published
2022
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31. Interactive Education on Sleep Hygiene with a Social Robot at a Pediatric Oncology Outpatient Clinic: Feasibility, Experiences, and Preliminary Effectiveness

Author

van Bindsbergen, Kelly L.A. (author), van der Hoek, Hinke (author), van Gorp, Marloes (author), Ligthart, Mike E.U. (author), Hindriks, K.V. (author), Neerincx, M.A. (author), Alderliesten, T. (author), Bosman, P.A.N. (author), Merks, Johannes H.M. (author), van Bindsbergen, Kelly L.A. (author), van der Hoek, Hinke (author), van Gorp, Marloes (author), Ligthart, Mike E.U. (author), Hindriks, K.V. (author), Neerincx, M.A. (author), Alderliesten, T. (author), Bosman, P.A.N. (author), and Merks, Johannes H.M. (author)

Abstract

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 social robot at a pediatric oncology outpatient clinic regarding the feasibility, experiences, and preliminary effectiveness. Methods: Researchers approached children (8 to 12 years old) who were receiving anticancer treatment and who were visiting the outpatient clinic with their parents during the two-week study period. The researchers completed observation forms regarding feasibility, and parents completed the Children’s Sleep Hygiene Scale before and two weeks after the educational regimen. The experiences of children and parents were evaluated in semi-structured interviews. We analyzed open answers by labeling each answer with a topic reflecting the content and collapsed these topics into categories. We used descriptive statistics to describe the feasibility and experiences, and a dependent-samples t-test to evaluate the preliminary effectiveness. Results: Twenty-eight families participated (58% response rate) and all interactions with the robot were completed. The children and parents reported that they learned something new (75% and 50%, respectively), that they wanted to learn from the robot more often (83% and 75%, respectively), and that they applied the sleeping tips from the robot afterwards at home (54%). Regarding the preliminary effectiveness, children showed a statistically significant improvement in their sleep hygiene (p = 0.047, d = 0.39). Conclusions: Providing an educational regimen on sleep hygiene in a novel, interactive way by using a social robot at the outpatient clinic seemed feasible, and the children and parents mostly exhibited positive reactions. We found preliminary evidence that the sleep h, Interactive Intelligence

Published
2022
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32. Increased health-related quality of life impairments of male and female survivors of childhood cancer: DCCSS LATER 2 psycho-oncology study

Author

van Gorp, Marloes, van Erp, Loes M. E., Maas, Anne, Kremer, Leontien C. M., 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, Cecile M., Bresters, Dorine, Louwerens, Marloes, van der van der Loo, Margriet, Huizinga, Gea A., Maurice-Stam, Heleen, Grootenhuis, Martha A., van Gorp, Marloes, van Erp, Loes M. E., Maas, Anne, Kremer, Leontien C. M., 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, Cecile M., Bresters, Dorine, Louwerens, Marloes, van der van der Loo, Margriet, Huizinga, Gea A., Maurice-Stam, Heleen, and Grootenhuis, Martha A.

Abstract

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 sur

Published
2022

34. Development curves of communication and social interaction in individuals with cerebral palsy

Author

Tan, Siok Swan, van Gorp, Marloes, Voorman, JM, Geytenbeek, JJM, Reinders-Messelink, HA, Ketelaar, M, Dallmeijer, AJ, Roebroeck, Marij, Wely, L, de Groot, V, van Meeteren, Jetty, van der Slot, Wilma, Stam, Henk, Gorter, JW, Verheijden, J, Amsterdam Movement Sciences - Restoration and Development, Rehabilitation medicine, AMS - Rehabilitation & Development, APH - Societal Participation & Health, APH - Health Behaviors & Chronic Diseases, Amsterdam Movement Sciences, Amsterdam Neuroscience - Neuroinfection & -inflammation, Public Health, and Rehabilitation Medicine

Subjects
Gerontology, Adult, Male, Coping (psychology), PRESCHOOL-CHILDREN, Adolescent, Human Development, LANGUAGE, MANUAL ABILITY, Cerebral palsy, 03 medical and health sciences, Interpersonal relationship, Young Adult, 0302 clinical medicine, Developmental Neuroscience, 030225 pediatrics, Intellectual Disability, Intellectual disability, YOUNG-ADULTS, medicine, Humans, Interpersonal Relations, Longitudinal Studies, Young adult, Child, Cerebral Palsy, Communication, GROSS MOTOR FUNCTION, Infant, Gross Motor Function Classification System, Original Articles, medicine.disease, Vineland Adaptive Behavior Scale, Social relation, Child, Preschool, Pediatrics, Perinatology and Child Health, CLASSIFICATION-SYSTEM, Original Article, Female, Neurology (clinical), TRAJECTORIES, Psychology, 030217 neurology & neurosurgery
Abstract

Aim To determine development curves of communication and social interaction from childhood into adulthood for individuals with cerebral palsy (CP). Method This Pediatric Rehabilitation Research in the Netherlands (PERRIN)‐DECADE study longitudinally assessed 421 individuals with CP, aged from 1 to 20 years at baseline, after 13 years (n=121 at follow‐up). Communication and social interactions were assessed using the Vineland Adaptive Behavior Scales. We estimated the average maximum performance limit (level) and age at which 90% of the limit was reached (age90) using nonlinear mixed‐effects modeling. Results One‐hundred individuals without intellectual disability were aged 21 to 34 years at follow‐up (39 females, 61 males) (mean age [SD] 28y 5mo [3y 11mo]). Limits of individuals without intellectual disability, regardless of Gross Motor Function Classification System (GMFCS) level, approached the maximum score and were significantly higher than those of individuals with intellectual disability. Ages90 ranged between 3 and 4 years for receptive communication, 6 and 7 years for expressive communication and interrelationships, 12 and 16 years for written communication, 13 and 16 years for play and leisure, and 14 and 16 years for coping. Twenty‐one individuals with intellectual disability were between 21 and 27 years at follow‐up (8 females, 13 males) (mean age [SD] 24y 7mo [1y 8mo]). Individuals with intellectual disability in GMFCS level V showed the least favourable development, but variation between individuals with intellectual disability was large. Interpretation Individuals with CP and without intellectual disability show developmental curves of communication and social interactions similar to typically developing individuals, regardless of their level of motor function. Those with intellectual disability reach lower performance levels and vary largely in individual development. What this paper adds Communication and social interactions in individuals with cerebral palsy without intellectual disability develop similarly to typically developing individuals.Communication and social interactions of individuals with intellectual disability develop less favourably and show large variation., What this paper adds Communication and social interactions in individuals with cerebral palsy without intellectual disability develop similarly to typically developing individuals.Communication and social interactions of individuals with intellectual disability develop less favourably and show large variation. This article's abstract has been translated into Spanish and Portuguese. Follow the links from the http://onlinelibrary.wiley.com/doi/10.1111/dmcn.14351/abstract to view the translations.

Published
2020
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36. Social Robots Survey

Author

van Bindsbergen, Kelly L. A., primary, van Gorp, Marloes, additional, Thomassen, Brigitte W., additional, Merks, Johannes H. M., additional, and Grootenhuis, Martha A., additional

Published
2022
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37. Psychosocial functioning of parents of Dutch long‐term survivors of childhood cancer.

Author

van Gorp, Marloes, Joosten, Mala M. H., Maas, Anne, Drenth, Babet L., van der Aa–van Delden, Alied, Kremer, Leontien C. M., 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, Bresters, Dorine, Louwerens, Marloes, Neggers, Sebastian J. C. C. M., van der Heiden‐van der Loo, Margriet, Maurice‐Stam, Heleen, and Grootenhuis, Martha A.

Subjects
*PSYCHOSOCIAL functioning, *CHILDHOOD cancer, *QUALITY of life, *POST-traumatic stress, *POST-traumatic stress disorder
Abstract

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 < 0.05 was considered statistically significant. Results: Parents (n = 661 of n = 448 survivors, 56% female, mean time since child's diagnosis: 21.3 [SD: 3.3] years) reported better HRQoL in social functioning and aggressive emotions than references (r =.08–0.17). Mothers additionally reported better HRQoL in pain, daily activities, sexuality, vitality, positive and depressive emotions (r =.07–0.14). Post‐traumatic stress was symptomatic in 3%, and associated with worse HRQoL (r = −0.27–0.48). Post‐traumatic growth was positively associated to post‐traumatic stress and better HRQoL (r = 0.09–0.12). Cancer recurrence was associated to better HRQoL (β = 0.37–0.46). Acceptance illness cognitions were associated to better (β = 0.12–0.25), and helplessness to worse outcomes (β = 0.14–0.38). Conclusions: HRQoL of parents of young adult survivors of CCS is comparable to references or slightly better. Only a small proportion reports symptomatic post‐traumatic stress. Improving acceptance and reducing feelings of helplessness may provide treatment targets for parents with psychosocial problems. [ABSTRACT FROM AUTHOR]

Published
2023
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38. Autonomy in participation in cerebral palsy from childhood to adulthood

Author

Schmidt, Anna, van Gorp, Marloes, Wely, L, Ketelaar, M, Hilberink, Sander, Roebroeck, Marij, Tan, Siok Swan, van Meeteren, Jetty, van der Slot, Wilma, Stam, Henk, Dallmeijer, AJ, de Groot, V, Voorman, JM, Smits, DW, Wintels, SC, Reinders-Messelink, HA, Gorter, JW, Verheijden, J, Rehabilitation Medicine, Academic Medical Center, APH - Personalized Medicine, APH - Quality of Care, ARD - Amsterdam Reproduction and Development, APH - Mental Health, Amsterdam Movement Sciences - Restoration and Development, APH - Societal Participation & Health, APH - Health Behaviors & Chronic Diseases, Rehabilitation medicine, Amsterdam Reproduction & Development (AR&D), Amsterdam Movement Sciences, Amsterdam Neuroscience - Brain Imaging, Amsterdam Movement Sciences - Rehabilitation & Development, APH - Methodology, and AMS - Rehabilitation & Development

Subjects
Adult, Male, Gerontology, Adolescent, medicine.medical_treatment, media_common.quotation_subject, GROSS, CHILDREN, artikel tijdschrift, Severity of Illness Index, Cerebral palsy, Disability Evaluation, Young Adult, 03 medical and health sciences, Interpersonal relationship, 0302 clinical medicine, Developmental Neuroscience, 030225 pediatrics, Intellectual disability, YOUNG-ADULTS, ADOLESCENTS, medicine, Humans, Interpersonal Relations, Young adult, autonomy, Child, Generalized estimating equation, media_common, cerebral palsy, Rehabilitation, Gross Motor Function Classification System, Social Participation, medicine.disease, MOTOR CAPACITY, MOBILITY, Personal Autonomy, Pediatrics, Perinatology and Child Health, Female, Neurology (clinical), Psychology, INTERVENTION, 030217 neurology & neurosurgery, Autonomy
Abstract

To determine the long-term development of autonomy in participation of individuals with cerebral palsy (CP) without intellectual disability.Individuals with CP (n=189, 117 males, 72 females; mean age [SD] 21y 11mo [4y 11mo], range 12-34y); were assessed cross-sectionally (46%) or up to four times (54%), between the ages of 12 and 34 years. Autonomy in participation was classified using phase 3 of the Rotterdam Transition Profile. A logistic generalized estimating equation regression model was used to analyse autonomy in six domains (independent variables: age, Gross Motor Function Classification System [GMFCS] level, and interaction between age and GMFCS level). Proportions of autonomy were compared to references using binomial tests (p0.05).In most domains, over 90% of participants (n=189, 400 observations, 80% in GMFCS levels I and II) reached autonomy in participation in their late twenties, except for intimate/sexual relationships. Those in GMFCS levels III to V compared to those in GMFCS levels I and II had less favourable development of autonomy in the transportation, intimate relationships, employment, and housing domains, and more favourable development in the finances domain. Compared to references, fewer individuals with CP were autonomous in participation.This knowledge of autonomy may guide the expectations of young people with CP and their caregivers. Furthermore, rehabilitation professionals should address autonomy development in intimate relationships, employment, and housing, especially in individuals with lower gross motor function.Individuals with cerebral palsy without intellectual disability achieved autonomy in most participation domains. Regarding intimate relationships, they continued to have less experience compared to age-matched references. Development of autonomy was less favourable for individuals in Gross Motor Function Classification System levels III to V.AUTONOMÍA EN LA PARTICIPACIÓN EN LA PARÁLISIS CEREBRAL DESDE LA INFANCIA A LA EDAD ADULTA: OBJETIVO: Determinar el desarrollo a largo plazo de la autonomía en la participación de individuos con parálisis cerebral (PC) sin discapacidad intelectual. MÉTODO: Individuos con PC (n=189, 117 varones, 72 mujeres; edad media [DE] 21 años y 11 meses [4 años y 11meses], rango 12-34 años); fueron evaluados de forma transversal (46%) o hasta cuatro veces (54%), entre las edades comprendidas entre los 12 y los 34 años. La autonomía en la participación fue clasificada usando la fase 3 del perfil de transición de Rotterdam (Rotterdam Transition Profile). Se utilizó un modelo de regresión logístico generalizado estimando la ecuación para analizar la autonomía en 6 dominios (variables independientes: edad, nivel del Sistema de Clasificación de la Función Motora Gruesa, [GMFCS], y la interacción entre la edad y el nivel GMFCS). Las proporciones de la autonomía se compararon con las referencias mediante pruebas binomiales (p0,05). RESULTADOS: En la mayoría de los dominios, más del 90% de los participantes (n=189.400 observaciones, 80% en los niveles I y II de la GMFCS) alcanzaron la autonomía en la participación bien entrados los 20 años, excepto para las relaciones íntimas/sexuales. Aquellos en los niveles III y V de la GMFCS en comparación con los niveles I y II de la GMFCS tuvieron un desarrollo de la autonomía menos favorable en el transporte, relaciones íntimas, empleo y en el dominio de la vivienda, y un desarrollo más favorable en el dominio de las finanzas. En comparación con las referencias, menos individuos con PC fueron autónomos en la participación. INTERPRETACIÓN: Este conocimiento de la autonomía puede guiar las expectativas de los jóvenes con PC y de sus cuidadores. Además, los profesionales de la rehabilitación deberían abordar el desarrollo de la autonomía en las relaciones íntimas, el empleo y la vivienda, especialmente en aquellos individuos con una función motora gruesa más baja.AUTONOMIA NA PARTICIPAÇÃO EM PARALISIA CEREBRAL DA INFÂNCIA À VIDA ADULTA: OBJETIVO: Determinar o desenvolvimento em longo prazo da autonomia na participação de indivíduos com paralisia cerebral (PC) sem deficiência intelectual. MÉTODO: Indivíduos com PC (n=189, 117 do sexo masculino, 72 do sexo feminino; média de idade [DP] 21a 11m [4a 11m], variação 12-34a); foram avaliados transversalmente (46%) ou até quatro vezes (54%), entre as idades de 12 e 34 anos. A autonomia na participação foi classificada usando a fase 3 do Perfil de Transição de Rotterdam. Um modelo de regressão logística com generalizada com equações estimadas foi usado para analisar a autonomia em seis domínios (variáveis independentes: idade, Nível segundo o Sistema de Classificação da Função Motora Grossa [GMFCS], e interação entre idade e nível GMFCS). As proporções de autonomia foram comparadas com as referências usando testes binomiais (p0,05). RESULTADOS: Na maior parte dos domínios, cerca de 90% dos participantes (n=189.400 observações, 80% nos níveis GMFCS I e II) atingiram autonomia na participação no final da terceira década de vida, exceto para relações íntimas/sexuais. Aqueles nos níveis GMFCS III a V comparados com os níveis I e II tiveram desenvolvimento menos favorável nos domínios da autonomia no transporte, relações íntimas, emprego, e domicílio, e mais desenvolvimento mais favorável no domínio das finanças. Em comparação com as referências, menos indivíduos com PC foram autônomos na participação. INTERPRETAÇÃO: Este conhecimento sobre a autonomia pode guiar as expectativas de jovens com PC e seus cuidadores. Além disso, profissionais da reabilitação devem abordar o desenvolvimento da autonomia nas relações íntimas, emprego e domicílio, especialmente nos indivíduos com menor função motora grossa.

Published
2020
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41. Health-Related Fitness, Motor Coordination, and Physical and Sedentary Activities of Urban and Rural Children in Suriname.

Author

Walhain, Fenna, van Gorp, Marloes, Lamur, Kenneth S., Veeger, Dirkjan H. E. J., and Ledebt, Annick

Subjects
PHYSICAL fitness for children, PHYSICAL activity, MOTOR ability, RURAL children, CITY children, HEALTH
Abstract

Background: Health-related fitness (HRF) and motor coordination (MC) can be influenced by children's environment and lifestyle behavior. This study evaluates the association between living environment and HRF, MC, and physical and sedentary activities of children in Suriname. Methods: Tests were performed for HRF (morphological, muscular, and cardiorespiratory component), gross MC (Körperkoordinations Test für Kinder), fine MC (Movement Assessment Battery for Children), and self-reported activities in 79 urban and 77 rural 7-year-old Maroon children. Urban-rural differences were calculated by an independent sample t test (Mann-Whitney U test if not normally distributed) and χ2 test. Results: No difference was found in body mass index, muscle strength, and the overall score of gross and fine MC. However, urban children scored lower in HRF on the cardiorespiratory component (P ≤ .001), in gross MC on walking backward (P = .014), and jumping sideways (P = 0.011). They scored higher in the gross MC component moving sideways (P ≤ .001) and lower in fine MC on the trail test (P = .036) and reported significantly more sedentary and fewer physical activities than rural children. Conclusions: Living environment was associated with certain components of HRF, MC, and physical and sedentary activities of 7-year-old children in Suriname. Further research is needed to evaluate the development of urban children to provide information for possible intervention and prevention strategies. [ABSTRACT FROM AUTHOR]

Published
2016
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43. Long-term course of difficulty in participation of individuals with cerebral palsy aged 16 to 34 years: a prospective cohort study

Author

Brain, Child Health, RF&S Team 1 Medisch, van Gorp, Marloes, Van Wely, Leontien, Dallmeijer, Annet J, de Groot, Vincent, Ketelaar, Marjolijn, Roebroeck, Marij E, Perrin-Decade study group, Brain, Child Health, RF&S Team 1 Medisch, van Gorp, Marloes, Van Wely, Leontien, Dallmeijer, Annet J, de Groot, Vincent, Ketelaar, Marjolijn, Roebroeck, Marij E, and Perrin-Decade study group

Published
2019

44. Long-term course of difficulty in participation of individuals with cerebral palsy aged 16 to 34 years:a prospective cohort study

Author

van Gorp, Marloes, Van Wely, Leontien, Dallmeijer, Annet J., de Groot, Vincent, Roebroeck, Marij E., van Gorp, Marloes, Van Wely, Leontien, Dallmeijer, Annet J., de Groot, Vincent, and Roebroeck, Marij E.

Abstract

Aim To determine the long-term course of difficulty in participation of individuals with cerebral palsy (CP) without intellectual disability between 16 years and 34 years of age. Method One hundred and fifty-one individuals with CP aged 16 to 20 years were included (63% male, 37% female; Gross Motor Function Classification System [GMFCS] levels I-IV; without intellectual disability). The Assessment of Life Habits questionnaire 3.0 general short form was used up to three times biennially and at 13-year follow-up (13-year follow-up: n=98). Scores (range 0-10) reflect difficulty and assistance in participation in housing, education and employment, interpersonal relationships, recreation, community life, and responsibilities. Multilevel models were used to determine the course of difficulty in participation by GMFCS level. Results Despite high average participation levels, 41% to 95% of adolescents and young adults with CP experienced difficulty. Difficulty in participation in housing and interpersonal relationships increased from age 16 years onwards and in most other life areas in the mid- and late 20s. In adolescents in GMFCS levels III and IV, participation in recreation and community life improved up to age 23 years. Interpretation Individuals with CP experience increasing difficulties in participation in their mid- and late 20s. Clinicians should systematically check for participation difficulties in young adults with CP and offer timely personalized treatment. What this paper addsMany individuals with cerebral palsy (CP) aged 16 to 34 years experience difficulty in participation. Difficulty in participation increases in the mid- and late 20s for individuals with CP. Participation in recreation/community life improves before age 23 years for those in Gross Motor Function Classification System levels III and IV.

Published
2019

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

Author

van Gorp, Marloes, Dallmeijer, Annet J., van Wely, Leontien, de Groot, Vincent, Terwee, Caroline B., Flens, Gerard, Stam, Henk J., van der Slot, Wilma, and Roebroeck, Marij E.

Subjects
*STATISTICAL significance, *STATISTICS, *PAIN, *CONFIDENCE intervals, *CROSS-sectional method, *HEALTH outcome assessment, *MENTAL health, *REGRESSION analysis, *SLEEP disorders, *PSYCHOMETRICS, *MENTAL depression, *SCALE analysis (Psychology), *DESCRIPTIVE statistics, *RESEARCH funding, *CEREBRAL palsy, *FATIGUE (Physiology), *DATA analysis software, *LOGISTIC regression analysis, *DATA analysis, *STATISTICAL correlation, *ODDS ratio, *LONGITUDINAL method
Abstract

Investigate pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy compared to references. 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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

Published
2021
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47. Participation in Social Roles of Adolescents With Cerebral Palsy: Exploring Accomplishment and Satisfaction

Author

Smits, Dirk-Wouter, primary, van Gorp, Marloes, additional, van Wely, Leontien, additional, Verheijden, Johannes, additional, Voorman, Jeanine, additional, Wintels, Sophie, additional, van der Cruijsen, Joyce, additional, Ketelaar, Marjolijn, additional, Ketelaar, M., additional, Smits, D.W., additional, Voorman, J.M., additional, Dallmeijer, A.J., additional, Roebroeck, M.E., additional, Reinders-Messelink, H.A., additional, Gorter, J.W., additional, and Verheijden, J., additional

Published
2019
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50. Long-term course of difficulty in participation of individuals with cerebral palsy aged 16 to 34 years: a prospective cohort study.

Author

Gorp, Marloes, Van Wely, Leontien, Dallmeijer, Annet J, Groot, Vincent, Ketelaar, Marjolijn, Roebroeck, Marij E, van Gorp, Marloes, de Groot, Vincent, and Perrin-Decade study group

Subjects
PEOPLE with cerebral palsy, INTELLECTUAL disabilities, EMPLOYMENT, DISEASES in young adults, INTERPERSONAL relations, AGE distribution, CEREBRAL palsy, COMPARATIVE studies, FUNCTIONAL assessment, LEARNING, LONGITUDINAL method, RESEARCH methodology, MEDICAL cooperation, RESEARCH, RESEARCH funding, SOCIAL skills, ACTIVITIES of daily living, EVALUATION research, DISEASE complications, PSYCHOLOGY
Abstract

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Published
2019
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