Influence of Selection Bias in Survey Studies Derived from a Patient-Focused Organization: A Comparison of Response Data from a Single Tertiary Care Center and the Acoustic Neuroma Association

Prummer, Christoph M.; Kerezoudis, Panagiotis; Peris-Celda, María; Tombers, Nicole M.; Link, Michael; Carlson, Matthew J.

doi:10.1055/s-0039-1679631

Cited by 4 publications

(8 citation statements)

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“…Limitations associated with ANA PANQOL data sets have been previously characterized by Prummer and colleagues. 18 Primarily, ANA cohorts demonstrate a skew toward significantly lower scores across all subdomains compared to institutional cohorts. Furthermore, all data, including treatment modality and tumor size, were self-reported.…”

Section: Discussionmentioning

confidence: 97%

Disease‐Specific Quality of Life in Vestibular Schwannoma: A National Cross‐sectional Study Comparing Microsurgery, Radiosurgery, and Observation

Chweya

Tombers

Lohse

et al. 2020

Otolaryngol.--head neck surg.

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Objective To examine the impact of treatment on disease-specific health-related quality of life (HRQOL) among patients with sporadic vestibular schwannoma (VS). Study Design National cross-sectional study. Setting Tertiary referral center and the Acoustic Neuroma Association. Subjects and Methods Adult patients with VS who completed the Penn Acoustic Neuroma Quality of Life (PANQOL) survey. Patients were classified by treatment at the most recent survey as microsurgery, radiosurgery, observation, or recently diagnosed (RD). PANQOL scores were compared among VS treatment groups and with nontumor controls using analysis of covariance. Results A total of 1362 respondents with VS were analyzed. Total PANQOL scores differed significantly by treatment ( P = .024) with adjusted means of 60, 63, 65, and 62 for the microsurgery, radiosurgery, observation, and RD groups, respectively. Subdomain scores for facial function, balance, hearing loss, and pain differed significantly ( P < .05) by treatment. Comparisons that surpassed thresholds for clinical significance included microsurgery compared to radiosurgery and observation for facial function, microsurgery compared to observation and RD for hearing loss, and microsurgery compared to radiosurgery and observation for pain. Subdomain scores for anxiety, facial function, balance, hearing loss, energy, and pain and total PANQOL scores for nontumor controls were significantly higher (ie, more favorable) compared to the VS groups ( P < .05). General health scores did not differ significantly between the nontumor controls and the VS groups ( P = .19). Conclusion Differences in HRQOL among treatment modalities are small and variably exceed the minimal clinically important difference. The impact of a VS diagnosis on HRQOL supersedes that of the treatment type.

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Section: Discussionmentioning

confidence: 97%

Disease‐Specific Quality of Life in Vestibular Schwannoma: A National Cross‐sectional Study Comparing Microsurgery, Radiosurgery, and Observation

Chweya

Tombers

Lohse

et al. 2020

Otolaryngol.--head neck surg.

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“…It is plausible to consider that patients with either poor or excellent outcomes may be more inclined to participate in these types of nonprofit organization. In other words, one could conceive that an organization focused on patient advocacy and support might disproportionately attract patients with outcomes or treatment courses that deviate from the average VS patient experience …”

Section: Discussionmentioning

confidence: 99%

“…Despite the promising results achieved in this study, the proposed ANN model should be tested on a general VS population rather than a survey‐based ANA respondent population. It has been shown that inherent limitations and biases (ie, participation bias) are associated with survey studies from national patient support organizations such as ANA . Prummer et al showed that the population profile of ANA survey respondents likely differs significantly from the greater population of VS patients that may be encountered at a tertiary referral center .…”

Section: Discussionmentioning

confidence: 99%

“…It has been shown that inherent limitations and biases (ie, participation bias) are associated with survey studies from national patient support organizations such as ANA . Prummer et al showed that the population profile of ANA survey respondents likely differs significantly from the greater population of VS patients that may be encountered at a tertiary referral center . Meanwhile, some of the participants completed the survey long time after their initial diagnosis and treatment, which can lead to recall bias.…”

Section: Discussionmentioning

confidence: 99%

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Prediction of vestibular schwannoma recurrence using artificial neural network

Abouzari

Goshtasbi

Sarna

et al. 2020

Laryngoscope Investig Oto

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Objectives: To compare two statistical models, namely logistic regression and artificial neural network (ANN), in prediction of vestibular schwannoma (VS) recurrence.Methods: Seven hundred eighty-nine patients with VS diagnosis completed an online survey. Potential predictors for recurrence were derived from univariate analysis by reaching the cut off P value of .05. Those nine potential predictors were years since treatment, surgeon's specialty, resection amount, and having incomplete eye closure, dry eye, double vision, facial pain, seizure, and voice/swallowing problem as a complication following treatment. Multivariate binary logistic regression model was compared with a four-layer 9-5-10-1 feedforward backpropagation ANN for prediction of recurrence.Results: The overall recurrence rate was 14.5%. Significant predictors of recurrence in the regression model were years since treatment and resection amount (both P < .001). The regression model did not show an acceptable performance (area under the curve [AUC] = 0.64; P = .27). The regression model's sensitivity and specificity were 44% and 69%, respectively and correctly classified 56% of cases. The ANN showed a superior performance compared to the regression model (AUC = 0.79; P = .001) with higher sensitivity (61%) and specificity (81%), and correctly classified 70% of cases.Conclusion: The constructed ANN model was superior to logistic regression in predicting patient-answered VS recurrence in an anonymous survey with higher sensitivity and specificity. Since artificial intelligence tools such as neural networks can have higher predictive abilities compared to logistic regression models, continuous investigation into their utility as complementary clinical tools in predicting certain surgical outcomes is warranted.Mehdi Abouzari and Khodayar Goshtasbi contributed equally to this manuscript.

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“…In the two studies reporting on QOL in members of local AN associations, Prummer et al [24] report that members were younger, had larger tumours, included more women, were more likely to have had surgery or radiation, and to report symptoms (hearing loss, tinnitus, dizziness, headache, facial paralysis) than non-members. As would then be expected, members had significantly lower scores on the PANQOL.…”

Section: Links To Patient Characteristicsmentioning

confidence: 99%

Quality of life outcomes in acoustic neuroma: systematic review (2000–2021)

Barker‐Collo

Miles

Garrett

2022

Egypt J Otolaryngol

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Background The majority of acoustic neuroma (AN) outcome studies examine medical outcomes. An alternative is to examine how AN, its treatment, and complications impact patients’ quality of life (QOL). A systematic review for AN was conducted using MEDLINE, PUBMED, and EMBASE. Manuscripts were limited to human participants, written in English, and published from 2000 to 2021. Of 426 unique citations, only 48 examined QOL outcomes. Risk of bias was assessed using Downs and Black’s Quality Assessment Index. Results Sixteen studies (33.3%) compared AN patients to normative/control data, 15 (31.25%) compared QOL outcomes between treatment groups, 8 (16.7%) examined changes in QOL over time within a treatment modality, 7 (14.6%) examined QOL in relation to a specific sample characteristic, and 2 (4.2%) used non-standard methods to describe patients experiences. QOL was worse post-surgery and/or radiotherapy compared with healthy controls and active surveillance and tied to symptoms experienced. Study quality was reasonable despite expectable limitations due to the nature of the population. Conclusions AN treatments, particularly surgical, may result in pain and nerve damage. Whilst not common, these can significantly impact QOL domains, including social and emotional wellbeing and social participation. Surgical teams should prepare patients for this possibility and ensure adequate community follow-up with specialist physical therapies, audiology, ophthalmology, and psychology to mitigate these effects should they occur.

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Influence of Selection Bias in Survey Studies Derived from a Patient-Focused Organization: A Comparison of Response Data from a Single Tertiary Care Center and the Acoustic Neuroma Association

Cited by 4 publications

References 0 publications

Disease‐Specific Quality of Life in Vestibular Schwannoma: A National Cross‐sectional Study Comparing Microsurgery, Radiosurgery, and Observation

Disease‐Specific Quality of Life in Vestibular Schwannoma: A National Cross‐sectional Study Comparing Microsurgery, Radiosurgery, and Observation

Prediction of vestibular schwannoma recurrence using artificial neural network

Quality of life outcomes in acoustic neuroma: systematic review (2000–2021)

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