Health-Related Quality of Life in Patients with Neurofibromatosis Type 1

“…In NF1 patients, disease visibility is associated with psychiatric morbidity [8] and has a negative impact on quality of life [9,10,11]. Research on the consequences of disfiguring disease symptoms shows that the patients concerned have a higher risk of developing low self-esteem, self-rejecting cognitions, problems in interpersonal relationships and a negative body image [12] which results in psychological stress.…”

Section: Introductionmentioning

confidence: 99%

Psychological Burden in Adult Neurofibromatosis Type 1 Patients: Impact of Disease Visibility on Body Image

Granström¹,

Langenbruch²,

Augustin³

et al. 2012

Dermatology

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Aim: To evaluate the impact of disease visibility on psychological stress factors in neurofibromatosis type 1 (NF1) and to explore the body image of NF1 patients. Methods: 228 adult NF1 patients participated in this cross-sectional survey. The questionnaire assessed perceived disease visibility and patients’ body image. Outcome parameters were depression, distress and quality of life. Mediation models were performed to test if body experience mediated the effect of disease visibility on outcome parameters. Results: Adult NF1 patients had a negative body image, expressed by bodily insecurity/uneasiness and fewer feelings of attractiveness and self-confidence. Compared to the body image of patients with other disfiguring diseases, patients with NF1 felt less attractive, displayed less self-confidence (women: p < 0.001; men: p < 0.001) and were more insecure/uneasy and sexually dissatisfied with their bodies (men: p < 0.001; women: p ≤ 0.12, d = 0.28). The found effect of disease visibility on psychological stress was completely mediated by how patients experienced their bodies. Conclusions: Our study shed light on the importance of how NF1 patients experience and appraise their own bodies. We revealed that body image is an important link between disease visibility and psychological well-being. The body image of patients can be improved with psychotherapeutic interventions.

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“…Overall, 87 patients (90%) expressed satisfaction with the procedure. This result highlights the impact of disfigurement in NF1 and its consequences for quality of life [10,12,13]. This satisfaction was not associated with disease phenotype or neurofibroma topography.…”

Section: Discussionmentioning

confidence: 65%

“…These benign tumours begin to appear during puberty [3,4,5,9], and between a few and several hundred lesions may develop, all over the body. Cutaneous neurofibromas result in dysmorphic features and aesthetic prejudice, leading to considerable stigma [10,11,12] and a significant impact on quality of life [13]. The excision of cutaneous neurofibromas, by surgery or with a carbon dioxide (CO 2 ) laser [14,15,16], could improve aesthetic appearance and self-esteem.…”

Section: Introductionmentioning

confidence: 99%

Treatment of Neurofibromas with a Carbon Dioxide Laser: A Retrospective Cross-Sectional Study of 106 Patients

et al. 2015

Self Cite

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Background: Few studies have evaluated the efficacy of carbon dioxide (CO₂) laser ablation for treating neurofibromatosis type 1 (NF1). Objective: To evaluate laser treatment safety and patient satisfaction at the French National Referral Centre for Neurofibromatosis. Methods: Retrospective survey with a specific questionnaire. The principal outcome measures included pain evaluation and assessments of treatment safety. Results: We included 106 patients, 70% of whom had more than 50 neurofibromas. Laser treatment was performed mostly for aesthetic reasons, or due to pain, recurrent local trauma or familial influence, under a local anaesthetic, during outpatient visits. The mean pain score was 4.0 ± 2.7 during the administration of local anaesthesia, 2.4 ± 2.1 during laser treatment and <2 48 h after treatment in 56% of cases. The mean satisfaction score for the treatment was 4.6 ± 3.4 and was not associated with disease phenotype. Conclusions: CO₂ laser treatment for NF could be considered more frequently and might help to decrease the social impact of the disease.

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Health-Related Quality of Life in Patients with Neurofibromatosis Type 1

Cited by 78 publications

References 20 publications

Quality of life among adult patients with neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis: a systematic review of the literature

Quality of life among adult patients with neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis: a systematic review of the literature

Psychological Burden in Adult Neurofibromatosis Type 1 Patients: Impact of Disease Visibility on Body Image

Treatment of Neurofibromas with a Carbon Dioxide Laser: A Retrospective Cross-Sectional Study of 106 Patients

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