Digital Patient-Reported Outcome Measures Assessing Health-Related Quality of Life in Skull Base Diseases-Analysis of Feasibility and Pitfalls Two Years after Implementation

Abstract

Health-related quality of life (HRQoL) assessment is becoming increasingly important in neurosurgery following the trend toward patient-centered care, especially in the context of skull base diseases. The current study evaluates the systematic assessment of HRQoL using digital patient-reported outcome measures (PROMs) in a tertiary care center specialized in skull base diseases. The methodology and feasibility to conduct digital PROMs using both generic and disease-specific questionnaires were investigated. Infrastructural and patient-specific factors affecting participation and response rates were analyzed. Since August 2020, 158 digital PROMs were implemented in skull base patients presenting for specialized outpatient consultations. Reduced personnel capacity led to significantly fewer PROMs being conducted during the second versus (vs.) the first year after introduction (mean: 0.77 vs. 2.47 per consultation day, p = 0.0002). The mean age of patients not completing vs. those completing long-term assessments was significantly higher (59.90 vs. 54.11 years, p = 0.0136). Follow-up response rates tended to be increased with recent surgery rather than with the wait-and-scan strategy. Our strategy of conducting digital PROMs appears suitable for assessing HRQoL in skull base diseases. The availability of medical personnel for implementation and supervision was essential. Response rates during follow-up tended to be higher both with younger age and after recent surgery.

Keywords: HRQoL; PROM; digital outcome measures; neurosurgery; patient-centered care; quality of life; skull base.

Figure 1

Availability of PROMs within 2 years after implementation, participation rate, and reasons for non-participation. Numbers in white/gray = number of patients (each left circle) who participated (orange) or did not participate (dark blue), or number of patients subdivided according to reasons for non-participation (each right circle).

Figure 2

Analysis of the conduction of PROMs in relation to the COVID-19 pandemic. no. = number, * = statistically significant difference (p < 0.05), (A,B): Comparison of the mean number (with standard deviation) of (A) consultations per “skull base consultation day” (SBCD) or of (B) completed PROMs per SBCD (in relation to the total of 96 SBCDs), illustrated for the 13 months during COVID-19 waves (“all waves” or subdivided into “second wave” (2nd wave), “third wave” (3rd wave), and “fourth wave” (4th wave)) and the 11 months beyond COVID-19 waves (“no wave”), and illustrated for the “first year” (1st year) and “second year “ (2nd year) after implementation of PROMs.

Figure 3

Evaluation of the response rate to PROMs depending on subgroup and neurosurgical procedure. ALL = total group, AMSB = subgroup “anterior and middle skull base”, CPA = subgroup “cerebellopontine angle”, NVC = subgroup “neurovascular conflict”, no. = number, T1 = initial assessment, T2 = follow-up assessment after 3 months, T3 = follow-up assessment after 12 months, “surgery after T1” = surgical treatment was performed after the initial assessment and before the follow-up assessment after 3 months, “wait-and-scan” = wait-and-scan strategy, “surgery before T1” = surgical treatment had already been performed before the initial assessment. (A): Number of completed assessments T1, T2, and T3 according to the neurosurgical procedure among ALL. (B): Number of completed assessments T1, T2, and T3 according to the neurosurgical procedure among AMSB (B1), CPA (B2), and NVC (B3).

Figure 4

Evaluation of the response rate to PROMs depending on age. (group) ALL = total group, (subgroup) AMSB = subgroup “anterior and middle skull base”, (subgroup) CPA = subgroup “cerebellopontine angle”, (subgroup) NVC = subgroup “neurovascular conflict”, T1 completed/T1 pos = completed initial assessments T1, T2/T3 pos = completed follow-up assessments T2/T3, T2/T3 neg = not-completed follow-up assessments T2/T3, * = statistically significant difference (p < 0.05). (A): Comparison of the mean age of the total group and the subgroups AMSB, CPA, and NVC at initial participation (T1), presented as median values (black horizontal lines) with 25–75% percentiles (colored box) and minimum/maximum (black vertical lines). (B,C): Comparison of the mean age of participants who completed T1 (T1 pos), T2 (T2 pos), and T3 (T3 pos) and those who did not complete T2 (T2 neg) or T3 (T3 neg) (values presented the same as in “(A)”) according to the total group (B) or the subgroups AMSB (C1), CPA (C2), or NVC (C3).

Figure 5

Evaluation of the response rate to PROMs depending on gender. ALL = total group, AMSB = subgroup “anterior and middle skull base”, CPA = subgroup “cerebellopontine angle”, NVC = subgroup “neurovascular conflict”, no. = number, T1 = initial assessment, T2 = follow-up assessment after 3 months, T3 = follow-up assessment after 12 months. (A,B): Number of completed assessments T1, T2, and T3 in relation to gender among ALL (A) and the subgroups AMSB (B1), CPA (B2), or NVC (B3) (the proportion of completed T2/T3 assessments in relation to the corresponding number of T1 assessments, sorted by gender, is presented as a percentage).