The effect of multiple recruitment contacts on response rates and patterns of missing data in a survey of bladder cancer survivors 6 months after cystectomy.

The Bladder Cancer Quality of Life Study collected detailed and sensitive patient-reported outcomes from bladder cancer survivors in the period after bladder removal surgery, when participation in survey research may present a burden. This paper describes the study recruitment methods and examines the response rates and patterns of missing data.

Detailed surveys focusing on quality of life, healthcare decision-making, and healthcare expenses were mailed to patients 5-7 months after cystectomy. We conducted up to 10 follow-up recruitment calls. We analyzed survey completion rates following each contact in relation to demographic and clinical characteristics, and patterns of missing data across survey content areas.

The overall response rate was 71% (n = 269/379). This was consistent across patient clinical characteristics; response rates were significantly higher among patients over age 70 and significantly lower among racial and ethnic minority patients compared to non-Hispanic white patients. Each follow-up contact resulted in marginal survey completion rates of at least 10%. Rates of missing data were low across most content areas, even for potentially sensitive questions. Rates of missing data differed significantly by sex, age, and race/ethnicity.

Despite the effort required to participate in research, this population of cancer survivors showed willingness to share detailed information about quality of life, health care decision-making, and expenses, soon after major cancer surgery. Additional contacts were effective at increasing participation. Response patterns differed by race/ethnicity and other demographic factors. Our data collection methods show that it is feasible to gather detailed patient-reported outcomes during this challenging period.

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 2019 Dec 06 [Epub ahead of print]

Joanna E Bulkley, Maureen O'Keeffe-Rosetti, Christopher S Wendel, James V Davis, Kim N Danforth, Teresa N Harrison, Marilyn L Kwan, Julie Munneke, Neon Brooks, Marcia Grant, Michael C Leo, Matthew Banegas, Sheila Weinmann, Carmit K McMullen

Kaiser Permanente Center for Health Research, 3800 North Interstate Avenue, Portland, OR, 97227-1110, USA. ., Kaiser Permanente Center for Health Research, 3800 North Interstate Avenue, Portland, OR, 97227-1110, USA., University of Arizona School of Medicine, Tucson, AZ, USA., Kaiser Permanente Department of Research and Evaluation, Pasadena, CA, USA., Kaiser Permanente Division of Research, Oakland, CA, USA., City of Hope/Beckman Research Institute, Duarte, CA, USA.