Screening and intervening: Psychological distress in neurofibromatosis type 2 (NF2)

Quarmby, Louise May; Dalton, Louise; Woolrich, Rachel A.; Clarke, Rachel; Emmanouil, Beatrice; Patel, Sonia; Rands, Gabriella; Parry, Allyson; Halliday, Dorothy

doi:10.1002/pon.5099

Cited by 2 publications

(3 citation statements)

References 7 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…[41][42][43][44] However, some studies have demonstrated limited construct validity for psychological functioning and emotional well-being. 44,45 Our group noted some limitations of this measure. The wording of response options and recall periods are not consistent across all items.…”

Section: 58mentioning

confidence: 99%

“…Prior systematic reviews have documented a relative paucity of published studies assessing QoL in patients with schwannomatosis, highlighting the need for additional investigation in this area. 3,49 Good internal consistency (Cronbach α = 0.85) and test-retest reliability (r = 0.84) 41 Moderate to good internal consistency (Cronbach α = 0.71-0.88) and test-retest reliability (r = 0.80 for total score, r = 0.63-0.76 for domain scores) 40 Demonstrated construct validity with generic QoL measures (r = −0.81 with sum of SF-36 scales; r = −0.61 to −0.70 for physical health scales; r = 0.71 with EuroQoL), 39,44 but weak correlations of relevant items to patient-reported psychological health/emotional well-being and objective hearing measures [43][44][45] Demonstrated construct validity to established generic QoL measures (e.g., SF-36) and domain-specific QoL scales such as emotional intelligence 47 and facial dysfunction 46 Discriminative validity by disease type (unilateral VS vs NF2) and NF2 severity 42,44 Known group validity between patients and controls 40 Sensitive to changes with bevacizumab 43 Limited data on sensitivity to change in clinical trials Validated in English, Spanish, French, German, Dutch, and Japanese (article lists all translations/references) 60…”

Section: 58mentioning

confidence: 99%

See 1 more Smart Citation

Current Recommendations for Patient-Reported Outcome Measures Assessing Domains of Quality of Life in Neurofibromatosis Clinical Trials

et al. 2021

View full text Add to dashboard Cite

Objective:To review and recommend patient-reported outcome (PRO) measures assessing multidimensional domains of quality of life (QOL) to use as clinical endpoints in medical and psychosocial trials for children and adults with neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and schwannomatosis.Methods:The PRO working group of the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration used systematic methods to review, rate, and recommend existing self-report and parent-report PRO measures of generic and disease-specific QOL for neurofibromatosis (NF) clinical trials. Recommendations were based on four main criteria: patient characteristics, item content, psychometric properties, and feasibility.Results:The highest rated generic measures were 1) the Pediatric Quality of Life Inventory (PedsQL™) Generic Core Scales for NF clinical trials for children or for children through adults, 2) the Functional Assessment of Cancer Therapy-General (FACT-G) for adult medical trials, and 3) the World Health Organization Quality of Life-BREF (WHOQOL-BREF) for adult psychosocial trials. The highest rated disease-specific measures were 1) the PedsQL NF1 Module for NF1 trials, 2) the NF2 Impact on Quality of Life (NFTI-QOL) Scale for NF2 trials, and 3) the Penn Acoustic Neuroma Quality of Life (PANQOL) Scale for NF2 trials targeting vestibular schwannomas. To date, there are no disease-specific tools assessing multidimensional domains of QOL for schwannomatosis.Conclusions:The REiNS Collaboration currently recommends these generic and disease-specific PRO measures to assess multidimensional domains of QOL for NF clinical trials. Additional research is needed to further evaluate the use of these measures in both medical and psychosocial trials.

show abstract

Section: 58mentioning

confidence: 99%

Section: 58mentioning

confidence: 99%

Current Recommendations for Patient-Reported Outcome Measures Assessing Domains of Quality of Life in Neurofibromatosis Clinical Trials

et al. 2021

View full text Add to dashboard Cite

show abstract

“…To date, few studies have shown elevated psychological distress and its negative impact on social relationships in patients with NF2 -SWN 5 , 10 , 11 . Hamoy-Jimenez et al (2020) showed a relationship between the QoL (SF-36) and pain, anxiety, and depression symptoms.…”

Section: Introductionmentioning

confidence: 99%

The impact of mental health on health-related quality of life in patients with NF2-related Schwannomatosis

Freier,

Lawson McLean,

Loeschner

et al. 2024

Sci Rep

View full text Add to dashboard Cite

NF2-related schwannomatosis (NF2-SWN) is a rare genetic disorder and is associated with progressive morbidities. This study aimed to investigate the relationship between NF2-SWN disease severity, health-related Quality of Life (QoL), and mental health aspects of patients. Standardised questionnaires assessing mental health problems (symptoms of depression, anxiety, and somatic burden), psychological factors (resilience, loneliness, and personality functioning), and health-related QoL were administered to 97 patients with NF2-SWN. The results of these questionnaires were compared with physician-rated disease severity. Questionnaires were completed by 77 patients. Physician-rated disease severity scores were available for 55 patients. NF2-SWN patients showed a high prevalence of clinically relevant symptoms of depression (30%), anxiety (16%), and somatic burden (32%). Almost all variables showed moderate to high correlations with NF2-SWN-related QoL. NF2-SWN-related QoL was associated with physician-reported disease severity (r = 0.614). In the stepwise hierarchical linear regression analysis, a significant model with four predictors (disease severity type, depression symptoms, personality functioning, and gender) explained 64% of the variance in NF2-SWN-related QoL. Our results showed a strong association between NF2-SWN-related QoL and depression symptoms. Moreover, personality functioning is an important influencing factor, representing a modifiable construct that can be targeted by prevention programs or psychotherapy.

show abstract

Screening and intervening: Psychological distress in neurofibromatosis type 2 (NF2)

Cited by 2 publications

References 7 publications

Current Recommendations for Patient-Reported Outcome Measures Assessing Domains of Quality of Life in Neurofibromatosis Clinical Trials

Current Recommendations for Patient-Reported Outcome Measures Assessing Domains of Quality of Life in Neurofibromatosis Clinical Trials

The impact of mental health on health-related quality of life in patients with NF2-related Schwannomatosis

Contact Info

Product

Resources

About