The Impact of Neurofibromatosis Type 1 on the Health and Wellbeing of Australian Adults

Crawford, Hilda; Barton, Belinda; Wilson, Meredith; Berman, Yemima; McKelvey‐Martin, Valerie J.; Morrison, Patrick J.; North, Klaus

doi:10.1007/s10897-015-9829-5

Cited by 37 publications

(66 citation statements)

References 53 publications

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“…Therefore, perhaps the visible/cosmetic effects of NF1 are not the sole cause of lower self-esteem in this population, but cognitive effects may also play a major role. This finding is in agreement with previous studies reporting that learning and/or attention problems lead to adverse school experiences, resulting in lower self-esteem and damaged self-image in individuals with NF1 (Ablon 2012;Crawford et al 2015). It is important for parents of children with NF1 to know about the high chance for learning problems so that they can seek intervention at an early age.…”

Section: Factors Influencing Self-esteemsupporting

confidence: 92%

“…^Wang et al (2012) also found that individuals with neurofibromatosis (including NF1, NF2, and schwannomatosis) were more likely to experience depression and anxiety because of their diagnosis. Learning deficits in adults with NF1 have been shown to cause feelings of low self-esteem (Crawford et al 2015). Additionally, social self-consciousness in women with NF1 has been associated with lower self-esteem (Smith et al 2013).…”

Section: Introductionmentioning

confidence: 99%

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Knowledge and Self‐Esteem of Individuals with Neurofibromatosis Type 1 (NF1)

Rosnau

Hashmi

Slopis

et al. 2016

Journal of Genetic Counseling

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Neurofibromatosis Type 1 (NF1) is a progressive genetic disorder characterized by physical findings such as café-au-lait macules, Lisch nodules, and neurofibromas in addition to other medical complications. Learning and social problems are more prevalent among individuals affected with NF1. It has been reported that people with NF1 have lower self-esteem (SE) when compared to the general population. Additionally, a study published over 20 years ago found that overall knowledge of NF1 was lacking in individuals affected with the condition. The goals of our study were to evaluate NF1 knowledge in adolescents and adults with the condition, as well as to determine if there is a link between patient knowledge and SE. Furthermore, we explored the impact of other factors, such as attendance at a NF1 support group and having a family history of NF1, on knowledge and SE. A survey comprised of knowledge-based questions and the Rosenberg Self-Esteem Scale was distributed to individuals with NF1 through the Texas NF Foundation. Overall, the 49 respondents (13 to 73 years of age) had a mean knowledge score of 77.9 % correct answers. Consistent with previous studies, the SE of our study population was lower when compared to general population norms. Although no correlation between knowledge and SE was observed, SE scores were on average higher if a person reported the following: having friends with NF1 (p = 0.009); attending a NF1 support group (p = 0.006); receiving care at a NF clinic (p = 0.049); or having received genetic counseling (p = 0.008). Further research is needed to better understand the relationship between these factors and SE in the NF1 population.

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Section: Factors Influencing Self-esteemsupporting

confidence: 92%

Section: Introductionmentioning

confidence: 99%

Knowledge and Self‐Esteem of Individuals with Neurofibromatosis Type 1 (NF1)

Rosnau

Hashmi

Slopis

et al. 2016

Journal of Genetic Counseling

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“…Family planning was an important theme, especially for young adults, which is in line with previous research (Crawford et al, 2015). Patients stated that they would want to have children without NF1 and that additional and timely education about genetics and reproduction was needed, although patients could not agree on the age at which this information should be given.…”

Section: Discussionsupporting

confidence: 88%

“…Family planning was an important theme, especially for young adults, which is in line with previous research (Crawford et al, 2015).…”

Section: Activities and Participationsupporting

confidence: 87%

“…Previous qualitative studies have focused on the impact of NF1 in adulthood, for instance, addressing the effects of plexiform neurofibromas (Lai et al, 2017), health and well-being, quality of life, and transition to adult care (Barke et al, 2014;Crawford et al, 2015;Draucker et al, 2017;Van Lierde et al, 2013). The aim of the current study was to provide more information on the full spectrum of worries and care needs in medical, psychological, social, and economic domains of adults with NF1 and parents of patients with NF1.…”

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confidence: 99%

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Worries and needs of adults and parents of adults with neurofibromatosis type 1

Rietman

Helden²,

Both³

et al. 2018

American J of Med Genetics Pt A

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Neurofibromatosis type 1 (NF1) is a neurocutaneous disorder associated with lifelong tumor growth propensity and neurocognitive impairments. Although follow‐up of adults with NF1 often focuses on tumor growth, follow‐up of cognitive or social problems and other NF1‐related comorbidity is often not a part of standardized care. In order to provide optimal care services for these patients, we explored the care needs of adults with NF1. A qualitative study was performed using semi‐structured group interviews, exploring worries and care needs in medical, psychological, and socioeconomic domains, also focusing on the transition from pediatric to adult care. Four focus groups were conducted, including young adult patients, patients over age 30, and parents of young adult patients. In total, 30 patients and 12 parents participated. Data were transcribed verbatim and analyzed by computerized thematic analysis. Themes were organized using the World Health Organization International classification of functioning, disability, and health (ICF). Results indicated many and diverse worries and care needs both during the transitional period and in adulthood in medical, mental health, and socioeconomic domains. Worries could be categorized into 13 themes. Parents reported high stress levels and difficulties with their parental role. Participants expressed the need for more information, access to NF1 experts, daily living support, care for mental health and socioeconomic participation, and closer communication between health‐care providers. In conclusion, worries and needs of patients and parents underline the importance of multidisciplinary follow‐up and continuity of care during and after the transitional period. Additionally, parental stress requires more attention from care providers.

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Factors associated with pediatric genetic counselors' practices related to bullying screening

Ginter

Lepard‐Tassin

Selig

et al. 2022

Journal of Genetic Counseling

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Bullying is reported in around 20% of children according to the US Department of Education and has been reported in the histories of individuals with genetic disorders.To our knowledge, there has never been a study surveying whether genetic counselors screen their pediatric patients for bullying. This is despite guidelines that pediatric healthcare providers should screen for bullying. The purpose of this study was to assess North American genetic counselors who see pediatric patients and enquire about their practices, attitudes, self-confidence, knowledge, and potential training needs in relation to bullying screening. In an anonymous online survey, 139 genetic counselors from the United States and Canada completed a modified version of the previously validated Healthcare Providers Practices, Attitudes, Self-Confidence, and Knowledge (HCP-PACK) instrument. Among our participant population, 85% reported they did not screen for bullying. This is despite no statistically significant difference in the amount of reported time spent on either initial or follow-up appointments between those who did or did not screen. Those who screened for bullying among their pediatric patients were more likely to view bullying as a healthcare problem (as measured on the attitude subscale) (t[135] = −2.07, p = 0.04) and had greater confidence in their ability to know how to assess for bullying (as measured on the self-confidence subscale) (t[135] = −2.90, p = 0.004) compared with participants who did not screen for bullying. Responses from genetic counselors who screened their patients for bullying demonstrated how screening for bullying can be aligned with the American Board of Genetic Counseling practice-based competencies. Even though the majority of participants did not view screening for bullying as a genetic counselor's role, 82.5% agreed that bullying was a healthcare problem and 63.6% thought genetic counselors should have additional educational opportunities to learn about bullying. Evidence-based guidance is needed to help genetic counselors interested in including screening for bullying in their practice.

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The Impact of Neurofibromatosis Type 1 on the Health and Wellbeing of Australian Adults

Cited by 37 publications

References 53 publications

Knowledge and Self‐Esteem of Individuals with Neurofibromatosis Type 1 (NF1)

Knowledge and Self‐Esteem of Individuals with Neurofibromatosis Type 1 (NF1)

Worries and needs of adults and parents of adults with neurofibromatosis type 1

Factors associated with pediatric genetic counselors' practices related to bullying screening

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