Dysfunctional coping is related to impaired skin‐related quality of life and psychological distress in patients with neurofibromatosis type 1 with major skin involvement

Bottesi, Gioia; Spoto, Andrea; Trevisson, Eva; Zuccarello, Daniela; Vidotto, Giulio; Cassina, Matteo; Clementi, Maurizio

doi:10.1111/bjd.18363

Cited by 14 publications

(10 citation statements)

References 41 publications

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“…It includes four scales: "interpersonal impairment" (mild social problems due to one's own skin dissatisfaction), "positive feelings and emotions" (positive sensory feelings and emotions in relation to one's own skin), "negative feelings and emotions" (negative affective states due to skin appearance), and "physical distress and impairments" (physical impairments due to a skin disease). The PSRQ scales demonstrated excellent internal consistency, convergent and divergent validity (15,28). In a recent study, the PSRQ "interpersonal impairment," "negative feelings and emotions," and "physical distress and impairments" scales emerged to adequately discriminate patients with Neurofibromatosis Type 1 (NF1) with major skin involvement and patients with NF1 with minor skin involvement (28).…”

Section: Self-report Measuresmentioning

confidence: 99%

“…The PSRQ scales demonstrated excellent internal consistency, convergent and divergent validity (15,28). In a recent study, the PSRQ "interpersonal impairment," "negative feelings and emotions," and "physical distress and impairments" scales emerged to adequately discriminate patients with Neurofibromatosis Type 1 (NF1) with major skin involvement and patients with NF1 with minor skin involvement (28).…”

Section: Self-report Measuresmentioning

confidence: 99%

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The Relevance of Assessing Subjective Experiences of Skin Toxicity During Adjuvant Radiotherapy for Breast Cancer

Bottesi

Stefanelli

Ambroso³

et al. 2021

Front. Oncol.

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PurposeRadiodermatitis is likely to be an inevitable side effect of radiotherapy (RT) but experiencing pain relief during RT might contribute making treatment more acceptable and less impairing. The current study aimed to assess the subjective perceptions and experiences of skin toxicity in a sample of women undergoing adjuvant RT for breast cancer.MethodsEighty patients were randomly assigned to one out of two groups: treatment (i.e., a newly developed topical product) and control (i.e., standard-of-care). Patients underwent adjuvant RT for 3 weeks. Clinical assessment of radiodermatitis and self-reported levels of pain, relief, and perceptions of treatment response were collected at the initiation of RT (T1), during RT (T2 and T3), and 2 weeks after treatment completion (T4). To assess changes in skin-related QoL, a subgroup of patients completed the Padua Skin-Related QoL questionnaire at T0 (before the initiation of RT) and at T4.ResultsA comparable timing of onset and severity of radiodermatitis during treatment was observed in both groups. The treatment group reported lower levels of pain and higher levels of relief compared to the control group when skin toxicity was at its highest levels (T2 and T3). Independent of the group, levels of perceived improvements in clinical status increased over time, whereas skin-related QoL worsened from T0 to T4.ConclusionCurrent findings outline the relevance of integrating clinical evaluations of radiodermatitis with patients’ subjective experiences of skin toxicity in interventional studies. Moreover, they provide preliminary evidence about the soothing effect of a newly developed topical product, thus supporting its usefulness of as a supportive care.

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Section: Self-report Measuresmentioning

confidence: 99%

Section: Self-report Measuresmentioning

confidence: 99%

The Relevance of Assessing Subjective Experiences of Skin Toxicity During Adjuvant Radiotherapy for Breast Cancer

Bottesi

Stefanelli

Ambroso³

et al. 2021

Front. Oncol.

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“…Furthermore, NF1 individuals demonstrate a decreased quality of life compared to healthy controls ( Kodra et al, 2009 ; Vranceanu et al, 2013 ). Current findings suggest experimentally, the higher the use of dysfunctional coping, the more quality of life, psychological stress and self- esteem are affected ( Bottesi et al, 2020 ).…”

Section: Introductionmentioning

confidence: 99%

Sexual Self-Esteem and Psychological Burden of Adults With Neurofibromatosis Type 1

et al. 2022

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Neurofibromatosis type 1 (NF1) is one of the most common tumor predisposition syndromes which primarily affects the skin. NF1 is characterized by various degrees of skin tumors and pigmentation abnormalities such as café-au-lait macules. Other skin diseases, such as psoriasis or neurodermatitis, have a negative influence on sexuality and quality of life and represent a psychological burden for those affected. The present study investigated the extent to which skin tumors (disfigurement) are related to sexuality and psychosocial factors in NF1 individuals. An anonymous online survey was carried out on Facebook and the webpage of the German Neurofibromatosis Association and a total of 166 persons participated. Of these participants, 92 were affected by NF1.74 healthy persons took part in the survey as a comparative group. Results show a significant relation between sexuality, body image, quality of life and the presence of depressive symptoms of the NF1 affected persons. Individuals with NF1 show a more negative sexual self-esteem. These concerns should be taken into account in NF1- related health care approaches.

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“…The presence of psychiatric comorbidities in patients with NF1 is likely due in part to the high burden of disease [24], particularly related to skin lesions [25], but may also have a neurobiological basis that is not currently understood [26]. For example, learning deficits in patients with NF1 appear to arise from a different mechanism than ADHD in patients without NF1 [27,28].…”

Section: Introductionmentioning

confidence: 99%

Assessing Psychiatric Comorbidity and Pharmacologic Treatment Patterns Among Patients With Neurofibromatosis Type 1

Houpt¹,

Schwartz²,

Coover³

2021

Cureus

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Background and objectiveNeurofibromatosis 1 (NF1) is a genetic disorder that is accompanied by psychiatric comorbidities such as depression, anxiety, and attention-deficit hyperactivity disorder (ADHD) in more than half of the patients. However, there are limited data describing optimal treatment strategies for these conditions. This study aimed to address that gap in understanding and explore the neurobiological basis of psychiatric comorbidities in NF1. Materials and methodsA retrospective cohort study was conducted among NF1 patients with a comorbid diagnosis of depression, anxiety, and/or ADHD. These disease states were chosen based on their relatively high reported prevalence in NF1 and shared pathophysiological mechanisms via monoaminergic dysfunction. Information regarding demographics, psychotherapeutic medication use, and clinical outcomes was gathered from electronic medical records. Relationships between patient-and medication-related factors and outcome measures were assessed using statistical analysis. ResultsThe study population (n = 82) consisted of NF1 patients with a comorbid diagnosis of depression (76.8%), anxiety (53.7%), and/or ADHD (23.2%). The use of second-generation antipsychotic agent augmentation therapy or hydroxyzine monotherapy was associated with significantly more behavioral health (BH)-related emergency department (ED) visits, admissions, and inpatient days in the study population. Conversely, the use of bupropion augmentation therapy, buspirone augmentation therapy, and stimulants was associated with improved clinical outcomes, though these results were not statistically significant. ConclusionsBased on our findings in this real-world study setting, patients with NF1 and psychiatric comorbidities appear to experience significant benefits from medications that enhance dopaminergic neurotransmission (e.g., bupropion, stimulants) when compared to drugs that oppose it (e.g., secondgeneration antipsychotics).

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Dysfunctional coping is related to impaired skin‐related quality of life and psychological distress in patients with neurofibromatosis type 1 with major skin involvement

Cited by 14 publications

References 41 publications

The Relevance of Assessing Subjective Experiences of Skin Toxicity During Adjuvant Radiotherapy for Breast Cancer

The Relevance of Assessing Subjective Experiences of Skin Toxicity During Adjuvant Radiotherapy for Breast Cancer

Sexual Self-Esteem and Psychological Burden of Adults With Neurofibromatosis Type 1

Assessing Psychiatric Comorbidity and Pharmacologic Treatment Patterns Among Patients With Neurofibromatosis Type 1

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