PMID- 30870367
OWN - NLM
STAT- MEDLINE
DCOM- 20200430
LR  - 20200511
IS  - 1537-4505 (Electronic)
IS  - 1531-7129 (Linking)
VI  - 40
IP  - 4
DP  - 2019 Apr
TI  - 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.
PG  - 504-510
LID - 10.1097/MAO.0000000000002151 [doi]
AB  - BACKGROUND: The Acoustic Neuroma Association (ANA) is a national, nonprofit 
      organization, focused on the education and support of patients with vestibular 
      schwannoma (VS). The aim of the present study is to characterize the profile of 
      ANA survey respondents and compare them with non-ANA patients evaluated at a 
      single tertiary academic referral center to investigate the potential influence 
      of selection bias. METHODS: A prospectively maintained VS quality-of-life (QOL) 
      database, comprised of patients evaluated at the authors' center and members of 
      the ANA, was queried. Demographic variables, patient-reported symptoms and tumor 
      characteristics, as well as patient-reported outcome scores were captured. 
      Health-related QOL was evaluated using the disease-specific Penn Acoustic Neuroma 
      QOL (PANQOL) questionnaire. Multivariable regression models were fitted for 
      PANQOL domain and total scores as well as satisfaction with treatment adjusting 
      for baseline demographics, symptoms, and PANQOL scores. RESULTS: A total of 1,060 
      patients (802 [76%] ANA respondents) were analyzed. Overall, ANA patients were 
      slightly younger (mean age: 59 vs 60 yr, p = 0.145), more likely to be women (72 
      vs 55%, p < 0.001), and had a larger tumor size (overall p < 0.001). Furthermore, 
      a significantly higher proportion of ANA patients were more likely to undergo 
      microsurgery (57 vs 21%) or radiation (21 vs 8%) and less likely to be managed 
      with observation (16 vs 65%, overall p < 0.001). A significantly higher 
      proportion of ANA patients reported hearing loss (95 vs 88%, p < 0.001), tinnitus 
      (80 vs 73%, p = 0.034), dizziness (78 vs 64%, p < 0.001), headache (56 vs 45% 
      p = 0.003), and facial paralysis (37 vs 12%, p < 0.001). On multivariable 
      analysis, ANA respondents exhibited significantly lower PANQOL scores for hearing 
      (OR: 0.47, 95% CI: 0.35-0.64, p < 0.001), balance (OR: 0.51, 95% CI: 0.38-0.70, 
      p < 0.001), pain (OR: 0.63, 95% CI: 0.46-0.86, p = 0.004), facial function (OR: 
      0.58, 95% CI: 0.42-0.80, p = 0.001), energy (OR: 0.44, 95% CI: 0.32-0.59, 
      p < 0.001), anxiety (OR: 0.54, 95% CI: 0.40-0.74, p < 0.001), general (OR: 0.72, 
      95% CI: 0.53-0.98, p = 0.03), and total QOL (OR: 0.40, 95% CI: 0.30-0.55, 
      p < 0.001). No statistically significant difference was seen with regard to 
      treatment satisfaction.To determine the true clinical relevance of these 
      differences, the two groups were compared using the minimal clinically important 
      difference (MCID) for each domain. MCID is defined as the smallest difference in 
      score in the domain of interest that patients perceive as important, either 
      beneficial or harmful. The domains for hearing, balance, energy, anxiety, and 
      total QOL reached their respective MCID thresholds, indicating that the ANA 
      cohort has QOL scores that are clinically, perceptually worse for these domains 
      compared to the non-ANA group. CONCLUSION: These data help delineate some of the 
      inherent limitations and biases associated with survey studies incorporating data 
      from national patient support organizations. The population profile of ANA survey 
      respondents likely differs significantly from the greater population of patients 
      with VS that may be encountered at a tertiary referral center.
FAU - Prummer, Christoph M
AU  - Prummer CM
AD  - Department of Otolaryngology - Head and Neck Surgery.
FAU - Kerezoudis, Panagiotis
AU  - Kerezoudis P
AD  - Department of Neurologic Surgery, Mayo Clinic School of Medicine, Rochester, 
      Minnesota.
FAU - Tombers, Nicole M
AU  - Tombers NM
AD  - Department of Otolaryngology - Head and Neck Surgery.
FAU - Peris-Celda, Maria
AU  - Peris-Celda M
AD  - Department of Neurologic Surgery, Mayo Clinic School of Medicine, Rochester, 
      Minnesota.
FAU - Link, Michael J
AU  - Link MJ
AD  - Department of Otolaryngology - Head and Neck Surgery.
AD  - Department of Neurologic Surgery, Mayo Clinic School of Medicine, Rochester, 
      Minnesota.
FAU - Carlson, Matthew L
AU  - Carlson ML
AD  - Department of Otolaryngology - Head and Neck Surgery.
AD  - Department of Neurologic Surgery, Mayo Clinic School of Medicine, Rochester, 
      Minnesota.
LA  - eng
PT  - Journal Article
PT  - Research Support, Non-U.S. Gov't
PL  - United States
TA  - Otol Neurotol
JT  - Otology & neurotology : official publication of the American Otological Society, 
      American Neurotology Society [and] European Academy of Otology and Neurotology
JID - 100961504
SB  - IM
CIN - Otol Neurotol. 2019 Aug;40(7):979-980. PMID: 31295209
CIN - Otol Neurotol. 2019 Aug;40(7):980-982. PMID: 31295210
MH  - Adult
MH  - Aged
MH  - Cohort Studies
MH  - Female
MH  - Hearing Loss/surgery
MH  - Humans
MH  - Male
MH  - Microsurgery
MH  - Middle Aged
MH  - Multivariate Analysis
MH  - Neuroma, Acoustic/*surgery
MH  - Patient Reported Outcome Measures
MH  - *Patient Selection
MH  - Patient-Centered Care/*statistics & numerical data
MH  - Quality of Life
MH  - *Selection Bias
MH  - Surveys and Questionnaires
MH  - Tertiary Care Centers/statistics & numerical data
EDAT- 2019/03/15 06:00
MHDA- 2020/05/01 06:00
CRDT- 2019/03/15 06:00
PHST- 2019/03/15 06:00 [entrez]
PHST- 2019/03/15 06:00 [pubmed]
PHST- 2020/05/01 06:00 [medline]
AID - 00129492-201904000-00021 [pii]
AID - 10.1097/MAO.0000000000002151 [doi]
PST - ppublish
SO  - Otol Neurotol. 2019 Apr;40(4):504-510. doi: 10.1097/MAO.0000000000002151.