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

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

Research output: Contribution to journalArticle

Abstract

Purpose: 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. Methods: 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. Results: 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. Conclusions: 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.

Original languageEnglish (US)
JournalQuality of Life Research
DOIs
StateAccepted/In press - Jan 1 2019

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Cystectomy
Urinary Bladder Neoplasms
Survivors
Quality of Health Care
Quality of Life
Decision Making
Demography
Research
Neoplasms
Urinary Bladder
Surveys and Questionnaires
Delivery of Health Care
Population
Patient Reported Outcome Measures

Keywords

  • Bladder cancer
  • Cancer survivors
  • Patient-reported outcomes
  • Recruitment
  • Response rates
  • Survey methods

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

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

In: Quality of Life Research, 01.01.2019.

Research output: Contribution to journalArticle

Bulkley, JE, O’Keeffe-Rosetti, M, Wendel, CS, Davis, JV, Danforth, KN, Harrison, TN, Kwan, ML, Munneke, J, Brooks, N, Grant, M, Leo, MC, Banegas, M, Weinmann, S & McMullen, CK 2019, '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', Quality of Life Research. https://doi.org/10.1007/s11136-019-02379-3
Bulkley, Joanna E. ; O’Keeffe-Rosetti, Maureen ; Wendel, Christopher S. ; Davis, James V. ; Danforth, Kim N. ; Harrison, Teresa N. ; Kwan, Marilyn L. ; Munneke, Julie ; Brooks, Neon ; Grant, Marcia ; Leo, Michael C. ; Banegas, Matthew ; Weinmann, Sheila ; McMullen, Carmit K. / 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. In: Quality of Life Research. 2019.
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abstract = "Purpose: 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. Methods: 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. Results: 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. Conclusions: 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.",
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AU - O’Keeffe-Rosetti, Maureen

AU - Wendel, Christopher S.

AU - Davis, James V.

AU - Danforth, Kim N.

AU - Harrison, Teresa N.

AU - Kwan, Marilyn L.

AU - Munneke, Julie

AU - Brooks, Neon

AU - Grant, Marcia

AU - Leo, Michael C.

AU - Banegas, Matthew

AU - Weinmann, Sheila

AU - McMullen, Carmit K.

PY - 2019/1/1

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N2 - Purpose: 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. Methods: 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. Results: 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. Conclusions: 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.

AB - Purpose: 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. Methods: 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. Results: 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. Conclusions: 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.

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KW - Response rates

KW - Survey methods

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