Prostate cancer
Information needs of early-stage prostate cancer patients: A comparison of nine countries

https://doi.org/10.1016/j.radonc.2009.12.038Get rights and content

Abstract

Background and purpose

Providing information to patients can improve their medical and psychological outcomes. We sought to identify core information needs common to most early-stage prostate cancer patients in participating countries.

Material and methods

Convenience samples of patients treated 3–24 months earlier were surveyed in Canada, England, Italy, Germany, Poland, Portugal, Netherlands, Spain, and Turkey. Each participant rated the importance of addressing each of 92 questions in the diagnosis-to-treatment decision interval (essential/desired/no opinion/avoid). Multivariate modelling determined the extent of variance accounted by covariates, and produced an unbiased prediction of the proportion of essential responses for each question.

Results

Six hundred and fifty-nine patients responded (response rates 45–77%). On average, 35–53 questions were essential within each country; similar questions were essential to most patients in most countries. Beyond cross-country similarities, each country showed wide variability in the number and which questions were essential. Multivariate modelling showed an adjusted R-squared with predictors country, age, education, and treatment group of only 6% of the variance. A core of 20 questions were predicted to be essential to >2/3 of patients.

Conclusions

Core information can be identified across countries. However, providing the core should only be a first step; each country should then provide information tailored to the needs of the individual patient.

Section snippets

Participants

Participants were men diagnosed with early-stage prostate cancer within the previous 3–24 months; the study was conducted in 2005–6. Additional eligibility criteria were: could read the survey in the language provided, and no cognitive or emotional problem, as judged by their physician.

Recruitment

Participants were recruited using one of two methods: (1) eligible patients identified from a database of positive prostate biopsies were mailed questionnaires with return-postage paid (Canada and England) or (2)

Participants

The number of participants in each country were: Canada – 130 (73% response rate), England – 113 (52%), Italy – 44 (72%), Germany – 58 (77%), Poland – 53 (76%), Portugal – 34 (45%), the Netherlands – 112 (48%), Spain – 49 (67%), and Turkey – 66 (75%).

Table 1 shows five patient characteristics of each country; the countries are organized according to the mean number of questions rated essential (described in detail in Country Comparisons below). There are some differences in the ages, education,

Discussion

This study was designed to identify the information needs of patients in participating countries using a single methodology so that the patients’ needs could be compared. In spite of differences among medical systems, cultures and languages, several observations are similar across the countries. First, on average, patients in each country identified between one-third and one-half of the questions as essential to be addressed. Second, the most frequent reason for the questions being essential

Acknowledgements

We would like to thank Weidong Kong for his time, effort and expertise in the General Linear Mixed Modelling. We would also like to thank all patients who took the time to participate in the survey. Finally, funding for the study was provided by the Kingston General Hospital Foundation, which supported data entry for the whole project, and by the Prostate Cancer Charity UK which supported patient recruitment in London, UK.

References (29)

  • E.C. Devine et al.

    A meta-analytic analysis of effects of psychoeducational interventions on length of postsurgical hospital stay

    Nurs Res

    (1983)
  • S. Greenfield et al.

    Expanding patient involvement in care

    Ann Intern Med

    (1985)
  • C. Jacobs et al.

    Behavior of cancer patients: a randomized study of the effects of education and peer support groups

    Am J Clin Oncol (CCT)

    (1983)
  • B.E. Meyerowitz et al.

    Psychosocial implications of adjuvant chemotherapy

    Cancer

    (1983)
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