Skip to main content
Fachgebiete
Automobil + Motoren Bauwesen + Immobilien Business IT + Informatik Elektrotechnik + Elektronik Energie + Nachhaltigkeit Finance + Banking Management + Führung Marketing + Vertrieb Maschinenbau + Werkstoffe Versicherung + Risiko
DE
EN
Bücher
Zeitschriften
Themenseiten
Organisationspsychologie Projektmanagement Marketing Smart Manufacturing
Weitere Formate
Podcasts Webinare Technik Webinare Wirtschaft Kongresse Veranstaltungskalender Awards
Jetzt Einzelzugang starten
Zugang für Unternehmen
Referenzkunden
SLX-Digitalkonferenz: Zukunftswerkstatt 2024

Mehr Umsatz mit Top-Kontakten

Am 7. Mai erfahren Sie, wie Vertriebsteams Leadgenerierung, Leadnurturing und Leadstrategien effizient steuern können.
Erweiterte Suche
Anmelden
nach oben
Quality of Life Research
Erschienen in: Quality of Life Research 4/2020

06.12.2019

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

verfasst von: 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

Erschienen in: Quality of Life Research | Ausgabe 4/2020

Einloggen

Aktivieren Sie unsere intelligente Suche, um passende Fachinhalte oder Patente zu finden.

search-config
loading …

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.
Vorheriger Artikel Time to deterioration in cancer randomized clinical trials for patient-reported outcomes data: a systematic review
Nächster Artikel Expressive writing intervention for posttraumatic stress disorder among Chinese American breast cancer survivors: the moderating role of social constraints

Sie haben noch keine Lizenz? Dann Informieren Sie sich jetzt über unsere Produkte:

Springer Professional "Wirtschaft+Technik"

Online-Abonnement

Mit Springer Professional "Wirtschaft+Technik" erhalten Sie Zugriff auf:

  • über 102.000 Bücher
  • über 537 Zeitschriften

aus folgenden Fachgebieten:

  • Automobil + Motoren
  • Bauwesen + Immobilien
  • Business IT + Informatik
  • Elektrotechnik + Elektronik
  • Energie + Nachhaltigkeit
  • Finance + Banking
  • Management + Führung
  • Marketing + Vertrieb
  • Maschinenbau + Werkstoffe
  • Versicherung + Risiko

Jetzt Wissensvorsprung sichern!

Jetzt informieren

Springer Professional "Wirtschaft"

Online-Abonnement

Mit Springer Professional "Wirtschaft" erhalten Sie Zugriff auf:

  • über 67.000 Bücher
  • über 340 Zeitschriften

aus folgenden Fachgebieten:

  • Bauwesen + Immobilien
  • Business IT + Informatik
  • Finance + Banking
  • Management + Führung
  • Marketing + Vertrieb
  • Versicherung + Risiko




Jetzt Wissensvorsprung sichern!

Jetzt informieren
Literatur
1.
Howie, L., Hirsch, B., Locklear, T., & Abernethy, A. P. (2014). Assessing the value of patient-generated data to comparative effectiveness research. Health Affairs (Project HOPE),33(7), 1220–1228.
2.
Basch, E., Abernethy, A. P., Mullins, C. D., Reeve, B. B., Smith, M. L., Coons, S. J., et al. (2012). Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology. Journal of Clinical Oncology,30(34), 4249–4255.PubMed
3.
Basch, E., Jia, X., Heller, G., Barz, A., Sit, L., Fruscione, M., et al. (2009). Adverse symptom event reporting by patients vs clinicians: Relationships with clinical outcomes. Journal of the National Cancer Institute,101(23), 1624–1632.PubMedPubMedCentral
4.
Liu, J. B., Berian, J. R., & Temple, L. K. (2018). The value of patient-reported outcomes in colon and rectal surgery. Seminars in Colon and Rectal Surgery,29(2), 72–78.
5.
6.
7.
Pessin, H., Galietta, M., Nelson, C. J., Brescia, R., Rosenfeld, B., & Breitbart, W. (2008). Burden and benefit of psychosocial research at the end of life. J Palliat Med.,11(4), 627–632.PubMedPubMedCentral
8.
Helsten, D. L., Ben Abdallah, A., Avidan, M. S., Wildes, T. S., Winter, A., McKinnon, S., et al. (2016). Methodologic considerations for collecting patient-reported outcomes from unselected surgical patients. Anesthesiology,125(3), 495–504.PubMed
9.
White, C., & Hardy, J. (2010). What do palliative care patients and their relatives think about research in palliative care?-a systematic review. Supportive Care in Cancer,18(8), 905–911.PubMed
10.
Krouse, R. S., Easson, A. M., & Angelos, P. (2003). Ethical considerations and barriers to research in surgical palliative care. American College of Surgeons.,196(3), 469–474.
11.
Addington-Hall, J. (2002). Research sensitivities to palliative care patients. European Journal of Cancer Care (England),11(3), 220–224.
12.
Horevoorts, N. J., Vissers, P. A., Mols, F., Thong, M. S., & van de Poll-Franse, L. V. (2015). Response rates for patient-reported outcomes using web-based versus paper questionnaires: Comparison of two invitational methods in older colorectal cancer patients. Journal of Medical Internet Research,17(5), e111.PubMedPubMedCentral
13.
14.
Ford, D. V., Jones, K. H., Middleton, R. M., Lockhart-Jones, H., Maramba, I. D., Noble, G. J., et al. (2012). The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: Characterising a cohort of people with MS. BMC Medical Informatics and Decision Making,12, 73.PubMedPubMedCentral
15.
Dillman, D. A., Smyth, J. D., & Christian, L. M. (2014). Internet, phone, mail, and mixed-mode surveys: The tailored design method (4th ed.). Hoboken, NJ: Wiley.
16.
Fowler, F. J. (2015). Survey research methods (5th ed.). London: SAGE.
17.
Groves, R. M., Cialdini, R. B., & Couper, M. P. (1992). Understanding the decision to participate in a survey. Public Opinion Quarterly,56(4), 475–495.
18.
Groves, R. M. (2006). Nonresponse rates and nonresponse bias in household surveys. Public Opinion Quarterly,70(5), 646–675.
19.
Lavrakas, P. J. (2008). Encyclopedia of survey research methods. Thousand Oaks, CA: SAGE.
20.
Rinne, S. T., Wong, E. S., Lemon, J. M., Perkins, M., Bryson, C. L., & Liu, C. F. (2015). Survey nonresponders incurred higher medical utilization and lower medication adherence. The American Journal of Managed Care,21(1), e1–e8.PubMed
21.
Gadkari, A. S., Pedan, A., Gowda, N., & McHorney, C. A. (2011). Survey nonresponders to a medication-beliefs survey have worse adherence and persistence to chronic medications compared with survey responders. Medical Care,49(10), 956–961.PubMed
22.
Paganini-Hill, A., Hsu, G., Chao, A., & Ross, R. K. (1993). Comparison of early and late respondents to a postal health survey questionnaire. Epidemiology,4(4), 375–379.PubMed
23.
Wendel, C. S., Grant, M., Herrinton, L., Temple, L. K., Hornbrook, M. C., McMullen, C. K., et al. (2014). Reliability and validity of a survey to measure bowel function and quality of life in long-term rectal cancer survivors. Quality of Life Research,23(10), 2831–2840.PubMedPubMedCentral
24.
Berlin, N. L., Hamill, J. B., Qi, J., Kim, H. M., Pusic, A. L., & Wilkins, E. G. (2018). Nonresponse bias in survey research: Lessons from a prospective study of breast reconstruction. The Journal of Surgical Research,224, 112–120.PubMed
25.
Ahlmark, N., Algren, M. H., Holmberg, T., Norredam, M. L., Nielsen, S. S., Blom, A. B., et al. (2015). Survey nonresponse among ethnic minorities in a national health survey–a mixed-method study of participation, barriers, and potentials. Ethnicity & Health,20(6), 611–632.
26.
27.
Larroque, B., Kaminski, M., Bouvier-Colle, M. H., & Hollebecque, V. (1999). Participation in a mail survey: Role of repeated mailings and characteristics of nonrespondents among recent mothers. Paediatric and Perinatal Epidemiology,13(2), 218–233.PubMed
28.
Larson, N., Neumark-Sztainer, D., Harwood, E. M., Eisenberg, M. E., Wall, M. M., & Hannan, P. J. (2011). Do young adults participate in surveys that ‘go green’? Response rates to a web and mailed survey of weight-related health behaviors. International Journal of Child Health and Human Development: IJCHD,4(2), 225–231.PubMed
29.
Feigelson, H. S., McMullen, C. K., Madrid, S., Sterrett, A. T., Powers, J. D., Blum-Barnett, E., et al. (2017). Optimizing patient-reported outcome and risk factor reporting from cancer survivors: A randomized trial of four different survey methods among colorectal cancer survivors. Journal of Cancer Survivorship,11(3), 393–400.PubMedPubMedCentral
30.
Willis, G. B., Smith, T., & Lee, H. J. (2013). Do additional recontacts to increase response rate improve physician survey data quality? Medical Care,51(10), 945–948.PubMedPubMedCentral
31.
Kwan, M., Leo, M., Danforth, K., Weinmann, S., Lee, V., Munneke, J., et al. (2018). Factors that Influence Selection of Urinary Diversion among Bladder Cancer Patients in Three Community-Based Integrated Health Care Systems. Urology.,125, 222–229.PubMedPubMedCentral
32.
McMullen, C. K., Kwan, M. L., Colwell, J. C., Munneke, J. R., Davis, J. V., Firemark, A., et al. (2019). Recovering from cystectomy: Patient perspectives. Bladder Cancer,5(1), 51–61.PubMedPubMedCentral
33.
34.
Leo, M. C., Gilbert, S. M., Wendel, C. S., Krouse, R. S., Grant, M., Danforth, K. N., et al. (2019). Development of a goal elicitation measure to support bladder cancer patient choice about urinary diversion. Journal of Urology,202(1), 83–89.PubMed
35.
Herdman, M., Gudex, C., Lloyd, A., Janssen, M., Kind, P., Parkin, D., et al. (2011). Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Quality of Life Research,20(10), 1727–1736.PubMedPubMedCentral
36.
Hopwood, P., Fletcher, I., Lee, A., & Al, Ghazal S. (2001). A body image scale for use with cancer patients. European Journal of Cancer,37(2), 189–197.PubMed
37.
Gilbert, S. M., Wood, D. P., Dunn, R. L., Weizer, A. Z., Lee, C. T., Montie, J. E., et al. (2007). Measuring health-related quality of life outcomes in bladder cancer patients using the Bladder Cancer Index (BCI). Cancer,109(9), 1756–1762.PubMed
38.
Gilbert, S. M., Dunn, R. L., Hollenbeck, B. K., Montie, J. E., Lee, C. T., Wood, D. P., et al. (2010). Development and validation of the Bladder Cancer Index: A comprehensive, disease specific measure of health related quality of life in patients with localized bladder cancer. Journal of Urology,183(5), 1764–1769.PubMed
39.
Grant, M., Ferrell, B., Dean, G., Uman, G., Chu, D., & Krouse, R. (2004). Revision and psychometric testing of the City of Hope Quality of Life-Ostomy Questionnaire. Quality of Life Research,13(8), 1445–1457.PubMed
40.
Fowler, F. J., Jr., Gerstein, B. S., & Barry, M. J. (2013). How patient centered are medical decisions?: Results of a national survey. JAMA Internal Medicine,173(13), 1215–1221.PubMed
41.
Fowler, F. J., Jr., Gallagher, P. M., Drake, K. M., & Sepucha, K. R. (2013). Decision dissonance: Evaluating an approach to measuring the quality of surgical decision making. The Joint Commission Journal on Quality and Patient Safety,39(3), 136–144.PubMed
42.
Brehaut, J. C., O’Connor, A. M., Wood, T. J., Hack, T. F., Siminoff, L., Gordon, E., et al. (2003). Validation of a decision regret scale. Medical Decision Making,23(4), 281–292.PubMed
43.
Hickman, R. L., Jr., Pinto, M. D., Lee, E., & Daly, B. J. (2012). Exploratory and confirmatory factor analysis of the decision regret scale in recipients of internal cardioverter defibrillators. Journal of Nursing Measurement,20(1), 21–34.PubMedPubMedCentral
44.
Deyo, R. A., Cherkin, D. C., & Ciol, M. A. (1992). Adapting a clinical comorbidity index for use with ICD-9-CM administrative databases. Journal of Clinical Epidemiology,45(6), 613–619.PubMed
45.
Pieper, D., Kotte, N., & Ober, P. (2018). The effect of a voucher incentive on a survey response rate in the clinical setting: A quasi-randomized controlled trial. BMC Medical Research Methodology,18, 86.PubMedPubMedCentral
46.
McMullen, C., Bulkley, J., Corley, D. A., Madrid, S., Davis, A. Q., Hesselbrock, R., et al. (2019). Health care improvement and survivorship priorities of colorectal cancer survivors: Findings from the PORTAL colorectal cancer cohort survey. Supportive Care in Cancer,27(1), 147–156.PubMed
47.
Corbie-Smith, G., Miller, W. C., & Ransohoff, D. F. (2004). Interpretations of ‘appropriate’ minority inclusion in clinical research. The American Journal of Medicine,116(4), 249–252.PubMed
48.
Walter, J. K., Burke, J. F., & Davis, M. M. (2013). Research participation by low-income and racial/ethnic minority groups: How payment may change the balance. Clinical and Translational Science,6(5), 363–371.PubMedPubMedCentral
49.
50.
El-Khorazaty, M. N., Johnson, A. A., Kiely, M., El-Mohandes, A. A., Subramanian, S., Laryea, H. A., et al. (2007). Recruitment and retention of low-income minority women in a behavioral intervention to reduce smoking, depression, and intimate partner violence during pregnancy. BMC Public Health,7, 233.PubMedPubMedCentral
51.
Webb, D. A., Coyne, J. C., Goldenberg, R. L., Hogan, V. K., Elo, I. T., Bloch, J. R., et al. (2010). Recruitment and retention of women in a large randomized control trial to reduce repeat preterm births: The Philadelphia Collaborative Preterm Prevention Project. BMC Medical Research Methodology,10, 88.PubMedPubMedCentral
52.
Rooney, L. K., Bhopal, R., Halani, L., Levy, M. L., Partridge, M. R., Netuveli, G., et al. (2011). Promoting recruitment of minority ethnic groups into research: Qualitative study exploring the views of South Asian people with asthma. Journal of Public Health (Oxford, England),33(4), 604–615.
53.
Cortes, D. E., Drainoni, M. L., Henault, L. E., & Paasche-Orlow, M. K. (2010). How to achieve informed consent for research from Spanish-speaking individuals with low literacy: A qualitative report. Journal of Health Communication,15(Suppl 2), 172–182.PubMed
54.
Sudore, R. L., Landefeld, C. S., Williams, B. A., Barnes, D. E., Lindquist, K., & Schillinger, D. (2006). Use of a modified informed consent process among vulnerable patients: A descriptive study. Journal of General Internal Medicine,21(8), 867–873.PubMedPubMedCentral
55.
Loftin, W. A., Barnett, S. K., Bunn, P. S., & Sullivan, P. (2005). Recruitment and retention of rural African Americans in diabetes research: Lessons learned. The Diabetes Educator,31(2), 251–259.PubMed
Metadaten
Titel
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
verfasst von
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
Publikationsdatum
06.12.2019
Verlag
Springer International Publishing
Erschienen in
Quality of Life Research / Ausgabe 4/2020
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-019-02379-3

Weitere Artikel der Ausgabe 4/2020

Quality of Life Research 4/2020 Zur Ausgabe

OriginalPaper

EQ-5D in coronary patients: what are they suffering from? Results from the ESC EORP European Survey of Cardiovascular Disease Prevention and Diabetes (EUROASPIRE IV) Registry

OriginalPaper

Partial or total knee replacement? Identifying patients’ information needs on knee replacement surgery: a qualitative study to inform a decision aid

OriginalPaper

Sleep quality of Shanghai residents: population-based cross-sectional study

Brief Communication

SF-36 predicts 13-year CHD incidence in a middle-aged Swedish general population

OriginalPaper

Association between polypharmacy and health-related quality of life among US adults with cardiometabolic risk factors

OriginalPaper

Assessing child quality of life impairments following pediatric burn injuries: Rasch analysis of the children’s dermatology life quality index

Premium Partner

    Bildnachweise