Experiences, expectations, and fears of adolescents with epilepsy or bronchial asthma

Fisch, Susanne Marie; Neininger, Martina Patrizia; Prenzel, Freerk; Bernhard, Matthias K.; Hornemann, Frauke; Merkenschlager, Andreas; Kieß, Wieland; Bertsche, Thilo; Bertsche, Astrid

doi:10.1007/s00431-018-3200-4

Cited by 13 publications

(8 citation statements)

References 26 publications

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“…All efforts should be made to minimize the negative impact of ADEs on the quality of life of pediatric patients. That is all the more important since children with epilepsy already feel impaired by their disease itself [10]. This negative impact on the patients' quality of life was also observed by physiotherapists, occupational therapists, and speech therapists [13].…”

Section: Burden Of Experienced Adesmentioning

confidence: 90%

“…They reported that those ADEs have a substantial negative impact on their children's daily life and development [2]. Although it has been shown that pediatric epilepsy patients are well able to report implications of their epilepsy [22] and many children and adolescents have at least some knowledge on their medication [10,22], it remains unclear if the perception of ADEs of anticonvulsants by the pediatric patients themselves matches the parents' concerns and experiences. Thus, we performed a survey of children and adolescents suffering from epilepsy on their fears and experiences concerning ADEs of their anticonvulsant medication, the burden of experienced ADEs, and measures taken in case of an ADE.…”

Section: Introductionmentioning

confidence: 99%

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How do pediatric patients perceive adverse drug events of anticonvulsant drugs? A survey

et al. 2020

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Anticonvulsant drugs have a high risk of adverse drug events. Little is known about the perception of those events by pediatric patients. We performed a survey in the neuropediatric departments of two university hospitals. Using a questionnaire, we interviewed patients aged 6-18 years with current anticonvulsant treatment regarding (i) their fears about potential adverse drug events, (ii) experienced adverse drug events, and (iii) perceived burden of experienced adverse drug events. One hundred patients took part in the interview. (i) 40 (40%) expressed fears that the medication could harm them. Eighteen of 40 (45%) named fears concerning specific adverse drug events. Of those, 12/18 (67%) feared neurologic or psychiatric symptoms. (ii) 37 (37%) of children described altogether 60 experienced adverse drug events. Of those, 38 (63%) concerned neurologic or psychiatric symptoms. (iii) 32/37 (82%) children who experienced adverse drug events felt bothered by the experienced event. Among others, they described an emotional burden (11/37, 30%), and restrictions in school performance (8/37, 22%) and favorite leisure activities (4/37, 11%). Conclusion: School-aged children are well able to describe adverse drug events of their anticonvulsant medication. Almost two thirds of the described events concern neurologic or psychiatric symptoms that cause an emotional burden and restrictions according to the patients. What is Known: • Anticonvulsants have a high potential of adverse drug events. • In an earlier survey, parents expressed fears of severe adverse drug events such as liver failure, which seldom occur, and reported a high number of neurological and psychological adverse drug events. What is New: • Many children fear that their anticonvulsants could harm them, and they fear and experience neurological and psychological adverse drug events. • According to the children, adverse drug events cause an emotional burden and restrictions in school performance and favorite leisure activities.

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Section: Burden Of Experienced Adesmentioning

confidence: 90%

Section: Introductionmentioning

confidence: 99%

How do pediatric patients perceive adverse drug events of anticonvulsant drugs? A survey

et al. 2020

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“…Our study shows that the contextual factor “knowledge about MFS” was limited in our participants, which could explain the limiting thoughts about their future life with MFS and the difficulties they had in expressing their support needs. A study on children and adolescents with chronic heart disease [5, 17], asthma and epilepsy [10] also showed knowledge gaps. Education about appearance, functioning and disability of MFS might help as a positive coping strategy and stimulate discussions about the adolescent (physical) functioning, which in turn may improve their ability to formulate support needs.…”

Section: Discussionmentioning

confidence: 99%

Marfan syndrome in adolescence: adolescents’ perspectives on (physical) functioning, disability, contextual factors and support needs

et al. 2019

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Although essential for providing optimal adolescent patient support, knowledge of the impact of Marfan syndrome in adolescence is limited. To explore adolescents’ perceived impact of Marfan syndrome on (physical) functioning (activities, participation), disability (limitations, restrictions), contextual factors and support needs, we interviewed 19 adolescents with Marfan syndrome. Audio-recordings were transcribed, coded and analysed using thematic analysis. Identified themes were “difficulties in keeping up with peers” and “being and feeling different from peers”. Furthermore, an adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and its contextual factors. Adolescents perceived problems in keeping up with peers in school, sports, leisure and friendships/relationships, and they could not meet work requirements. Moreover, participants perceived to differ from peers due to their appearance and disability. Contextual factors: coping with Marfan syndrome, self-esteem/image, knowledge about Marfan syndrome, support from family/friends/teachers, ability to express needs and peer-group acceptation acted individually as barrier or facilitator for identified themes.Conclusion: Adolescents with Marfan syndrome perceived limitations and restrictions in (physical) functioning. They perceived problems in keeping up with peers and perceived to differ from peers due to their appearance and disability. This warrants awareness and tailored physical, psychosocial, educational and environmental support programmes to improve (physical) functioning and empowerment of adolescents with Marfan syndrome.What is known:• Marfan syndrome is a hereditary connective tissue disorder.• Marfan syndrome affects multiple systems.What is new:• Adolescents with Marfan syndrome perceive (1) problems in keeping up with peers in school, sports, leisure, friendships/relationships and work (2) to differ from peers due to their appearance and disability.• An adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and contextual factors.Electronic supplementary materialThe online version of this article (10.1007/s00431-019-03469-7) contains supplementary material, which is available to authorized users.

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“…Childhood asthma is a chronic disease which is known to affect the patient's life [12] and this study evaluated how characteristics of a child's asthma impacts on QoL of the child's family members using the PedsQLFIM. The overall PedsQLFIM score of parents of children with asthma was lower in our population compared to other studies of children with no illness [10], and the score was higher compared to children with other complex chronic health conditions [6], oncology [13], and chronic gastrointestinal disorders [10].…”

Section: Discussionmentioning

confidence: 99%

Quality of life of the family of children with asthma is not related to asthma severity

et al. 2019

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The quality of life for the family is an important outcome of childhood asthma. The aim of the study was to describe the quality of life in Eastern European families who have a child with asthma. The Pediatric Quality of Life Inventory Family Impact Module was completed by the parents of 527 children with asthma. The median overall score was 75.0 (Interquartile range 63.9; 87.5). The following factors were independently associated with lower quality of life: waking with asthma symptoms ≥one night a week (odds ratio 7 2.53 [1.34; 4.75]), regular use of symptoms reliever medication (2.47 [1.57; 3.87]), female gender (1.97 [1.27; 3.05]), additional difficulties such as anxiety and financial 9 hardship (3.81 [2.45; 5.93]). Lower socioeconomic status of the family and exposure to 10 moulds at home also doubled the odds for lower quality of life. Asthma severity and 11 control were associated with quality of life in univariate, but not multivariate analysis. Conclusion: Multiple factors, several of which are not related to asthma, contribute to the family burden of having a child with asthma. Clinicians should be mindful of the impact of asthma on the child and the family, and consider exploring factors not directly related to childhood asthma.

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Experiences, expectations, and fears of adolescents with epilepsy or bronchial asthma

Cited by 13 publications

References 26 publications

How do pediatric patients perceive adverse drug events of anticonvulsant drugs? A survey

How do pediatric patients perceive adverse drug events of anticonvulsant drugs? A survey

Marfan syndrome in adolescence: adolescents’ perspectives on (physical) functioning, disability, contextual factors and support needs

Quality of life of the family of children with asthma is not related to asthma severity

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