Validation of the facial dysfunction domain of the Penn Acoustic Neuroma Quality-of-Life (PANQOL) Scale

Abstract

The objective of this study is to evaluate the strength of content validity within the facial dysfunction domain of the Penn Acoustic Neuroma Quality-of-Life (PANQOL) Scale and to compare how it correlates with a facial dysfunction-specific QOL instrument (Facial Clinimetric Evaluation, FaCE). The study design is online questionnaire survey. Members of the British Acoustic Neuroma Association received both PANQOL questionnaires and the FaCE scale. 158 respondents with self-identified facial paralysis or dysfunction had completed PANQOL and FaCE data sets for analysis. The mean composite PANQOL score was 53.5 (range 19.2-93.5), whilst the mean total FaCE score was 50.9 (range 10-95). The total scores of the PANQOL and FaCE correlated moderate (r = 0.48). Strong correlation (r = 0.63) was observed between the PANQOL's facial dysfunction domain and the FaCE total score. Of all the FaCE domains, social function was strongly correlated with the PANQOL facial dysfunction domain (r = 0.66), whilst there was very weak-to-moderate correlation (range 0.01-0.43) to the other FaCE domains. The current study has demonstrated a strong correlation between the facial dysfunction domains of PANQOL with a facial paralysis-specific QOL instrument.

Surgical management for large vestibular schwannomas: a systematic review, meta-analysis, and consensus statement on behalf of the EANS skull base section

“…Evaluation of the quality of life has gained importance in medicine in recent years and has resulted in a definite shift in the focus of physicians, from a clinical and technical standpoint toward a more patient-oriented treatment strategy that focuses on well-being. At present, the Penn Acoustic Neuroma Quality-of-Life (PANQOL) scale [85,101,151] is the only patient-reported QOL instrument validated for VS patients. This 26-item survey assesses patient-perceived QOL in seven domains as follows: hearing, balance, facial dysfunction, anxiety, energy, pain, and general health.…”

“…Nevertheless, the SF-36 is an established, cross-disease QOL tool used for validation of other questionnaires. The Facial Clinimetric Evaluation (FaCE) scale [78] that measures facial impairment and disability specifically evaluates the impact of facial palsy on QOL [38] and correlates significantly with the facial dysfunction domain of the PANQOL [101].…”

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

“…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…”

“…40 Convergent validity has been demonstrated across multiple domains (fatigue, facial paresis, and emotional intelligence). [46][47][48] The PANQoL was recommended to be used only as an exploratory outcome measure because patients with NF2 were excluded during the development of this scale and in all currently published studies. Therefore, it does not address all aspects of NF2-related QoL and does not account for all potential etiologies of NF2-related symptoms (e.g., questions address difficulties in walking due to balance issues but not neuropathies or muscle atrophy).…”